Monkey Bear and Buddy

food wars

2012-02-01T18:48:00.000-05:00

My buddy is slowly making me insane. I mean that in the best possible way. Most of the day is filled with hugs and laughter, but each mealtime is filled with drama and stress.

A typical meal lately goes something like this: I put food on the table. My buddy throws himself down in a full blown temper tantrum. Monkey bear and I roll our eyes and eat our meal while he rolls around on the ground.

Since my buddy is in school now I just can't bring myself to send him in with an empty belly. So now come the theatrics... from me. I can remember when monkey bear was about 9 months old and I had to sing Old MacDonald every time I wanted to feed her or she refused to open her mouth.

So the food is on the table. It is food that my buddy approves of yet he is complaining full force. If you just plop him at the table in this state, the food is guaranteed to fly across the room. So Mommy heads over to iTunes to put on the one song that will stop the crying: Three Little Birds by Bob Marley. (Or Bobby Marley if your name is monkey bear) If it is a mild meltdown, then the song alone may be good enough. If we are in major meltdown mode you must pick up the flailing 35 pound preschooler and dance about the room first.

The smile he gives is almost worth the strain on my back and pregnant belly. The next move is either straight to his chair. Or on those really bad days, he sits on my lap. Never put the food within reach until you have completely assessed the mood. One must slyly nudge the milk close and if that goes well then introduce the food.

The thing that gets me is when my buddy finally starts to eat, he is happy and will eat the whole thing. I am embarrassed that I fall for it every time. But I hate the cracker diet in front of the TV and that seems to be the alternative. I've tried feeding him nothing and then sometime later give him the same food. It's never gone well.

I would pay countless dollars for some magic chair that he loved and sat in happily while munching on his healthy food. A girl can dream...

play

2012-01-18T15:04:00.000-05:00

When we were having our second child, there was a nagging fear that we wouldn't love them as much or the older child wouldn't want them in the family. Then that second child is born with an extra chromosome and the fears are multiplied. I am very happy to report that all our fears were unjustified.

It really helps that my buddy is just so darn loveable. He hugs with all his heart and is genuinely happy to see you walking his way. It also helps that monkey bear is an extraordinary girl. She has compassion and kindness oozing from every pore.

Lately they have become pros at playing together and it just warms my heart. One favorite game is 'baby'. My buddy will lay on monkey bear's lap like he is the baby. Monkey bear will rock him back and forth while singing a lullaby. My buddy will do a fake snore. Then it's feeding time followed with a vigorous pat on the back. My buddy's real good with a loud fake burp.

Another favorite game is hide-and-seek. My buddy will go to the front door, cover his face and count (a series of grunts). He is so good at finding monkey bear and they are both so excited. When it's my buddy's turn to hide, you better find him fast because he doesn't stay hidden for long.

I think the one that makes me laugh the most is what we call 'chase the vacuum'. When I vacuum, I will chase them as I clean pretending that I am about to suck them up. My buddy one day decided to chase us around with their play vacuum. Everyone ends up in hysterics.

Seeing my two favorite people enjoying each others company so much makes me one happy Mama.

Mrs. Nice Pants

2011-12-27T18:28:00.000-05:00

No more Mrs. Nice Pants. My buddy's teachers are about to see the Mama and Papa Bear come out of hibernation. I've been concerned about the amount of speech therapy my buddy was receiving at school. We recently had an informal meeting with his teacher and speech therapist about it and the response we got was - we're still getting to know him.

My mom is in town and she also happens to be a retired Special Education Teacher. We talked about what my buddy was receiving - she couldn't believe how little speech therapy he was getting. I also showed her the IEP (which they never reviewed with me, just stuck into my buddy's backpack one day) and apparently a lot of the goals are poor.

The most frustrating thing as a parent is I don't speak special ed. I am more than willing to fight for what he needs, but I need a professional to help me figure out what he needs. Silly me thought his teacher and team of specialists would be there for me and want to do everything they can to help my buddy succeed.

The good news is my mom still has many friends in the education field and we will have no problem finding an advocate to help us. She will know the proper words to use and what is reasonable to ask for... and fight for if it comes to that.

I really wanted to have a positive experience our first year in school with no battles. I assumed the school would offer everything they could giving my buddy the opportunity he needs to grow and learn. The rose colored glasses are off.

assessment

2011-12-12T15:43:00.000-05:00

My buddy had his first parent teacher conference last week. I have gotten very used to having my buddy assessed by Birth to 3. I never expect him to perform above age range and I am thrilled when he does something on a typical timeline. Birth to 3 concentrated on areas he needed help with in a more clinical way.

I'm not sure if my buddy's preschool teacher is more lenient or she is looking at him in a very different light. There are 30 different Performance Standards in which he has been observed and assessed on. Only 3 of those he performed at a less than 3 year old range. Of course those all dealt with communication. Over half he was rated at a 3 year old level and three areas he performs at a 4 year old level.

Of course my favorite is 'Shows empathy and caring for others.' He has been known to approach crying children and give them a gentle rub on the back - even if he is the reason they are crying.

I don't want to underestimate my buddy and I think he is doing great at school, but the more I think about his progress report, the more I wonder about it. At first I was over the moon. Finally a report that shows how amazing he is.

I don't know a lot about typical behavior of a 3 year old, but I'd be willing to bet most can 'use words to express emotions or feelings' and 'sustains attention to task' and 'uses writing to convey meaning' at a higher level than my buddy. Yet he was assessed at a 3 year old level in all these areas.

I know in the big picture none of these things matter. My buddy will make it through school fine - doing better in some areas than other areas. As long as he continues to show empathy and caring for others, I'm fine with whatever assessments come our way.

doctors

2011-11-10T11:04:00.001-05:00

My buddy, aside from the extra chromosome, is a healthy little boy. Yet that extra chromosome demands so many different doctors appointments. As a newborn we saw a heart doctor for an echo-cardiogram and a pulminologist to try and figure out why he couldn't kick the oxygen. We were so relieved that my buddy didn't need open heart surgery or a feeding tube or any other surgery for that matter.

He has had about 9 complete blood counts done. Imagine holding down a screaming child with super chubby arms surrounded by at least 3 nurses attempting to find a vein. The easiest one was done when he was born. They took him down to the nursery and when I headed down there to see how he was doing, I almost lost my cool on some nurse. My buddy was lying under the french fry warmer with one of those blue surgical sheets over his stomach with the opening over his belly button. He was lying with both arms and legs out not moving at all. Turns out he liked the heat and fell fast asleep. They opened his belly button and got the blood they needed and closed it up like new.

We've seen an eye doctor 3 times, had 8 hearing tests all followed by appointments with the ENT. My buddy saw a chiropractor for a while to help with misalignment that was causing excessive spit up. All this is on top of the usual pediatrician appointments. For a while there it felt like we were always at some doctor or another. My buddy does tend to get sick often and he usually doesn't kick it until it turns into something major and he hits the antibiotics.

I am heading to the CT Down Syndrome Congress annual convention in a few days. I will learn about even more tests and procedures that are now being recommended. We have been very fortunate that my buddy has no major eating issues or health concerns. I want my buddy to be as healthy as he can be. But some times I just want to whine a big, "I don't wanna," when I think about adding another test to the list.

school

2011-10-18T10:57:00.001-04:00

My buddy is officially a preschooler. He loves school and is excited in the morning to go. I have to physically restrain him just to give a quick kiss before he runs into the building. He could care less that Mommy is leaving. I was emotionally fine on the first day. I knew he wouldn't cry and he would have fun. It's right up his alley - a room of fun toys and friends to share them with.

As the days go by - Ok so it's only been 3 days but that's not the point - I'm having a harder and harder time with it. All the parents get a sheet home that says what the story was, what songs they sang, what activities they did and what snack was. But that is all I know. My buddy can't tell me anything about what he did. I have no idea if he tried the snack, ate any of it, drank anything. Did he sit for circle time? Has he been listening? Do the other kids play with him? Is he trying to communicate with anyone or is he quiet?

I don't know if I'm being Overprotective Mom by wanting to know all of this. I know it's only 2.5 hours and I don't expect the teacher to give me a blow by blow but I get very little information.

I also didn't expect so much of preschool to be above my buddy. I know that sounds crazy. He has Down syndrome and will never be on target with his peers. I also know that when he is little is the closest he will ever be to being on target - the gap will only widen as he gets older.

When I think about the class having a discussion of their neighborhood I can't help thinking about the obvious - my buddy can't talk so he can't really be a part of the discussion. But on top of that, I don't think he even knows what a neighborhood is. They drew pictures of their favorite toy. Aside from the fact that there is no picture drawing for my buddy, I don't think he could answer (even using signs) if asked what his favorite toy is. They have to bring in something from home to share with the class. Sure I can stick a toy in his backpack, but how is he going to share it with the other kids? Other than naming it (with signs) and possibly saying the color, (with signs) that's about all he has.

I need to just let it go. My buddy loves school and that should be enough for me.

end of an era

2011-10-13T18:36:00.000-04:00

Birth to 3 has been coming to my house since my buddy was 4 weeks old. There have been small changes and additions to our team but for the most part they've supported, educated, and worked my buddy to the bone for the past 3 years. When he hears that knock, his face lights up and he goes running to the door.

Monkey bear has been known to play speech therapy or physical therapy - games that I'm sure aren't in every house! She studied the therapists and helped with encouraging words then puts her babies through the trenches.

There have been times when I didn't want someone coming over twice a week every week and felt like my child wasn't my own. It's tough having the 'homework' and list of exercises I should be doing with my buddy. I always dreaded the report of, "he hasn't done anything new." But I know with all my heart that he would never be doing all the things he is able to do without their guidance and knowledge.

Our Birth to 3 team came the other day for a goodbye party. Since it was a party, monkey bear insisted I bake a cake. They brought balloons and presents - even one for monkey bear for being such a good helper. They all ate cake even though it was 9:30am. There were hugs all around. My buddy made two rounds with the hugs and gave out some kisses as well. It was bittersweet.

Disney

2011-10-03T14:05:00.000-04:00

We survived and maybe even flourished on our Disney vacation. Both the kids were amazing. I had some doubts and reservations before leaving. I just can't believe how good they did.

A friend lent us a portable DVD player which saved the airplane flight. A few episodes of Dora and Signing Time and my buddy (who was strapped into his car seat to prevent escape) was entertained and quiet. Monkey bear was so excited to be on an airplane - and eating Jelly Bellies. And what child doesn't love a bus ride? Disney had its share of buses for us to ride.

Our hotel was beautiful and Nana and Grampa were there to help. My buddy loved the free reign of running through the bedrooms, kitchen, and living room. He quickly discovered that he could climb into the jacuzzi tub and turn the water on all by himself. I quickly discovered the door handles were just tricky enough that he couldn't open them himself.

Disney is so good about guests with special needs. We got a pass that allowed us to skip almost all the lines. We never waited more than maybe 10 minutes for anything. Which is a good thing because at about 8 minutes my buddy has had enough. At about 9 minutes my arms are about to fall off holding him and the sweat from his little furnace body in the hot FL weather is about too much to bear. Good thing there were 4 adults.

Monkey bear was overwhelmed when we first stepped into the Magic Kingdom. She refused to smile, talk, or get out of the stroller. We went on Small World and she lifted her head in interest. We went on Peter Pan and she said, "Can we ride that again?" And we did. Monkey bear loved all the rides and loved hugging each character she met. At first she wasn't sure. She kept asking me, "Are they real?" "Of course they are."

When my buddy first spied Mickey Mouse (after we skipped the gigantic line) he went running right into his arms with the biggest smile on his face. His favorite ride was the carousel. I truly love everything Disney, but this carousel is awful. It is slow and only spins around 3 times. But if we walked by it, my buddy would sign 'horse' and point and throw a fit if we didn't ride.

It was really hot and the kids would melt around 2pm each day. My buddy woke from his stroller nap drenched in sweat. But a short stroll from our room was a pool with a playground next to it. We stayed up late one night for the light parade. Monkey bear was in love. She sat on my shoulders and clapped, pointed, and waved.

The only bad thing is we are in the post vacation slump. Monkey bear wants to know why we have to live in CT and why we don't live in Disney World. My buddy will randomly throw himself on the ground in protest. I imagine he is thinking, "hey where's all the entertainment?"

frustration

2011-09-13T13:17:00.000-04:00

We had a few sweet weeks where my buddy was communicating well, eating at the big table, happy and (almost) behaving. He was also sleeping through the night. Ahhhhh... it was so nice. Needless to say, we aren't there anymore.

My buddy has reached max-frustration level. I really don't know what to do for him. There are several things that can set him off like when the music in the car isn't what he wants. If we are out for a walk and monkey bear gets too far ahead of him. When he wants to watch TV and it's turned off. And, of course, anytime I say, "no".

His reaction these days is to throw himself on the ground while complaining. My buddy will also bang his head on the ground or hit himself in the head. And there is no shortage of throwing and screaming. He doesn't want to hear anything you have to say and the only thing I can do is just hug him. I understand that this is typical behavior in younger kids but it just more painful to watch your almost 3 year old acting this way.

Some days he really tries to tell me things, but even with the signs he can be hard to understand. My buddy says only the ending sound to words. So horse and shoes sounds the same. As does bike, walk, and truck. Those times when he tries to tell me something new and I actually get it, we are both so proud.

The latest manifestation is his refusal to eat anything that isn't a cracker. I make my buddy a meal - one that he typically loves and would eat every last bite of - he will nibble a little then spit it out and throw it across the room. Then he says, "eat" and does his little, "hmmmmmm" like he is thinking of what he wants to eat. The only time he does eat is when I get him a snack and he sits down on the ground in front of the TV. (I know ... mother-of-the-year award here I come.)

It's been about a week with no fruit, no protein, little veges, and lots of milk and crackers. I can't even get my buddy to eat a vitamin. I've hear so many moms say, "Jimmy won't graduate High School doing (insert undesired behavior here)." Meaning, don't sweat it because it will pass just like everything eventually does. But I can picture my buddy being 18 and sitting in front of the TV eating crackers.

Do I take the pressure off and just let him eat only crackers hoping he'll change his mind and join us for a meal? Do I get super strict and only offer him food if he is sitting at the table? Does his high chair pulled up to the table not really work for him? Maybe there is nothing different I can do.

open house

2011-09-02T18:11:00.001-04:00

This afternoon was the open house at my buddy's soon-to-be preschool. It was an informal 30 minute meet the teacher/other kids/fill out paperwork kind of a thing. As we entered the classroom, most parents were sitting down in pint sized chairs filling out all necessary papers so their kids can start school in 4 days. Let's just say I was not one of those parents casually checking boxes while my child played nicely or sat next to me and colored. You could find me with the red folder tucked under my arm stopping my buddy from running out the door, playing in the toilet, dumping all containers, etc. At least they don't need my information for a few more weeks.

I was slightly relaxed and optimistic about my buddy starting preschool in October... until today. I felt like I was in a movie where the heroine is trapped and looks in every direction seeing more and more danger with no escape.

There was a nice selection of items that my buddy can use against himself - scissors, sharpened pencils, play coins just the right size to choke on. Pan to the bathroom with a door that doesn't close all the way. Imagine my buddy with his hands in the toilet with no lid. Oh, and while your imagination is working, feel free to add his body covered in the markers that are accessible.

My buddy will have a field day with the teacher's desk, the computer and books with paper pages. I can't even think about the poor kid who gets one of those ginormous wooden blocks smashed into his head. After a while I had to stop looking. I started the mantra: he's not the first kid with Down syndrome to go to preschool. They must know what they are doing.

I'll do my best to warn them at our PPT next month. Just look out for the innocent 3 year old who happens to be next to my buddy when the urge to throw is too big to ignore. Never take your eyes off my buddy and just assume 80% of his behavior will be inappropriate.

big sister

2011-08-24T20:19:00.001-04:00

Monkey bear has just realized that she is the big sister. She's only 2 years and 10 months behind on that one. I guess when your little brother enters your life when you are 15 months old you can hardly equate your still-baby-self to a big sister. I think all this time monkey bear has thought of them as equals.

It all started a month ago when she was able to help my buddy climb onto a bed that was up high. It was the first time she had ever lifted him. Monkey bear now tells me to be quiet so she can be the big sister and teach him. When we are out for walks and my buddy sees a bike and says, "aaaack," monkey bears says, "b it starts with b ... can you say bbbbike?"

Monkey bear can also be seen carrying my buddy down the hallway. This is really amusing. Monkey bear is maybe 5 inches taller and weighs 37lbs to his 35lbs. She gets her arms around him from behind and leans back. I'm amazed that she can make it down the hallway with him in her arms. But she does... and he loves it.

The funny part is that she's been the most amazing big sister all along. She spent hours lying next to him for tummy time, did countless funny faces to get him to stay sitting, and tirelessly walked up and down the hallway holding his hands teaching him to walk. I think that more than makes up for the fact that she never picked him up as a baby or carried him around.

the leash

2011-08-20T19:38:00.000-04:00

My buddy has a leash. OK so it's this super cute backpack that has a tether attached to it, but to me it's the same. I never in my life, even after having kids, thought I'd be a mom who had to put their kid on a leash. I mean, who has a kid who can't walk next to them in a public place? Me.

I bought it mostly for when we go to Disney next month. I imagine I won't feel foolish using it there. And if I do, I can make my parents 'walk' my buddy while I stroll behind pretending I don't know them.

My buddy hasn't quite gotten the hang of it yet. At times he does really well- I remind him that he needs to walk next to Mommy and it's not as bad. Then there are those times where it's like walking a 36 pound puppy who suddenly sees a squirrel. I fear the plastic hook won't hold. Oh and I do apologize to those individuals we clotheslined.

Unfortunately my choices are limited. I can keep him strapped into his stroller when we are, say at at the mall on a busy weekend day. My buddy will get no exercise and learn no skills on how to manage oneself in a crowd. Or I can 'walk' him trying to teach him to stay next to the stroller and not sign "go" and then run.

In the past, you could find me abandoning the stroller and chasing my buddy while calling to monkey bear to make sure she was safe. She does enjoy the chase and is usually right there with me. I figure that scenario (which happened every time I let my buddy loose) is just about as embarrassing as putting my buddy on a leash.

less trouble

2011-08-18T14:26:00.002-04:00

Out of nowhere my buddy has become less trouble. I suppose a more accurate description would be that his trouble has matured. But more on that later. First let's enjoy the good parts:

My buddy kept his shoes and socks on for the 5 minute ride to the grocery store. First time ever!

He is able to walk through the parking lot holding my hand without throwing himself down on the ground in protest of holding my hand and walking the direction I want him to.

My buddy came up to me and said, "aack" without signing anything. Meaning - I'm hungry, can I please have a snack. He actually knew his needs and communicated them to me using only words.

When I say "wait" in the store (on those rare occasions when he is allowed out of the cart) he actually pauses for a second or two before taking off.

So, my buddy has really matured and seems to understand so much more. He gets in the car on a summer afternoon and signs "hot". This may not mean much to you, but to me he is initiating conversation and giving me a little peek of what is going on in that busy mind of his.

Of course, there is another level of trouble waiting at every turn. My buddy now needs to have every toy that monkey bear is playing with. He grabs onto it with all his might - and that is a lot of might - and throws himself backwards until he is laying down using his whole body to pull. That boy has a good grasp of leverage and physics. My buddy has also taken to chasing monkey bear around the house trying to throw things at her head.

My buddy continues to be our greatest source of entertainment and laughs. Just the other day monkey bear said, "I never want my buddy to grow up because he is just so silly when he is 2."

mothering

2011-08-01T20:13:00.000-04:00

I was talking to my husband the other night and we got chatting about the past. I was saying how I never knew what I wanted to "be" when I grew up... and I still don't. I went through countless majors in college only to graduate with a degree I knew I would never use just to have a degree. Even my childhood scrap book is filled with ambitions like "I want to be a gymnastics person who gets first place sometimes." Oh yeah, I dreamed big.

Then my husband had one of those rare moments of insight. "You're supposed to be a Mom," he said.

Ohhhh. That's why this time in my life feels so right. I can guarantee that monkey bear will grow out of the mothering need long before my buddy does. I'd by lying if I said that I wasn't a little excited about having my buddy hanging out with me for many years. I've been searching for a great reason never to have to find a job ever again.

I will try my best to raise him to be as independent as he can. The truth of that is living in the guest house out back may be it for him. (Not that we have a guest house, mind you) I really am OK with that - assuming he is OK with it as well.

I love being mom. I will mother them as long as they will let me.

guilt

2011-07-11T14:41:00.001-04:00

Things I currently feel guilty about (in no particular order):

* My buddy has never helped me cook... he's not even allowed in the kitchen.

* Monkey bear can only do art projects when my buddy is asleep.

* My buddy is constantly being strapped into something. I have a 7 minute window of patience chasing him around a store.

* Monkey bear has to leave whenever my buddy (or I) have reached our limit even if she isn't ready to go.

* My buddy has never painted or used markers and rarely is allowed to color with crayons.

* Monkey bear always has to wear her shoes even though my buddy's shoes have a permanent spot in the diaper bag.

* My buddy will try and "tell" me something and I have no idea what he is trying to say.

transition

2011-06-21T14:15:00.000-04:00

Today was the transition meeting for my buddy to enter preschool. Our Birth to Three team was there to inform my buddy's teacher, program coordinator, occupational and speech therapist from the preschool where he stands in his development. The preschool will use that information to set up an individual plan for him. They asked some questions and answered the few questions we had.

In the beginning of October, we will go back for the PPT where his plan will be outlined. Then my buddy will spend some time in the classroom with one of his Birth to Three providers while I hang in the hallway. After some observation, his plan will be finalized and my buddy will be preschool bound mid-October.

It seems like so much for one 3 year old boy. I am grateful that he will have so many opportunities. I think about not so long ago when he would have been denied an education and more often than not, sent to an institution with no hope for his future. I really hope that I never have to battle the school system like so many others have. Perhaps it's naive of me, but I believe that most Special Ed teachers are there for the right reasons and do have my buddy's best interests at heart. (Maybe having my Mom be a Special Ed teacher led me to that conclusion.)

Of course, I still have my concerns. My buddy's safety being at the top of the list. When we visited the classroom, they had the doors wide open. There are so many bins to dump and things to throw and smaller toys than what I usually let him near. I wonder if he will be able to communicate with his teacher (who only knows a small handful of sign language) and if he will not care or if it will lead to more frustration.

For now it all seems like a lot to grasp. I think I need to start making a list of questions to bring with me in October. For some reason, I have this mental image of my buddy at school - he separates from me with no problem, is playing and having fun, and then all of a sudden... he wonders where Mama is and doesn't know what is going on or when I will be back and no one can understand him. Who will hug and kiss him when he falls down? The hardest part of parenting is letting go.

different

2011-06-13T14:57:00.000-04:00

I am always amazed how 2 children who grow up in the same house can be so different. Here are just a few examples:

Monkey bear can talk nonstop, yet she won't even say "Hi" to her friends. My buddy has few words, yet he's the first to greet a stranger with an "Aaahhh" and a pat on the knee.

My buddy loves all things salty and monkey bear is a sweet loving girl. She favors fruit and he loves his veggies.

Monkey bear slept through the night at 12 weeks and hasn't stopped since. My buddy still wakes up more nights than he sleeps through.

My buddy can be covered head to toe in all sorts of dirt, grime, and food without noticing anything. If monkey bear gets so much as a drip of ice cream in her dress, she must change instantly.

When we are out and about, Monkey bear sticks to my buddy for the emotional safety while he is busy running off on his own not caring if anyone is close by.

Monkey bear will push a baby in a swing for 15 minutes and love every minute. My buddy loves a baby for about 27 seconds then hits him on the head.

My buddy wakes up with a smile and is off and running instantly. Monkey bear wakes up grumpy and is "too tired to walk down the stairs."

The list goes on and on. I wonder if there was another sibling if they would fall somewhere in the middle or if they'd find their own different. I love watching their personalities emerge and trying to guess what they will be like as teenagers and adults.

monkey toes

2011-05-27T13:14:00.000-04:00

My buddy has this huge space between his big toe and all the rest. It's one of those random physical traits of Down syndrome. My buddy knows how to use his toes. He uses that space as leverage and turns the big toe into an opposable thumb. One of his favorite thing to do is to grab your fingers as you read him a book with that big toe.

My buddy uses his toes for stirring up a little extra trouble. He can cling onto drawer pulls - climbing up dressers in a flash. He can get a grip on the baby gate - luckily not climbing over quite yet. You should see the toys he can manipulate with those toes.

I guess that's why my buddy hates shoes and socks so much. It's hard to use primitive tools and swing from the vines when your monkey toes are covered up.

I've been thinking lately about what joy my buddy brings to me and how much he has changed me. I know I tend to complain a lot about the trouble he gets into and he does exhaust me on a daily basis, but he is so much more than that. Monkey bear made me a Mommy and I will be eternally grateful for that. My buddy made me a better person.

I have only stuck my (non-opposable) big toe into the lake of Down syndrome but already it has enriched me. If I can reach one soon-to-be Mommy who gets the prenatal diagnosis and doesn't want anything to do with that kind of a baby... I would tell her that it is more good than bad. By a long shot. When my buddy was born, a woman with a daughter with Ds told me that she celebrates and gets so excited when she hears that someone just had a child with Ds. I, of course, thought she was a little wacko. But now I see what she means.

My buddy has brightened my world. I can't wait to see all that he has to give me.

delays

2011-05-16T14:19:00.000-04:00

I've been thinking lately about my buddy being delayed. Most of the time I think about all he's accomplished and don't stress too much... except for when he flings his food in my face or hits a baby. I know that he's not typical and worry about his lack of words but I try and take it in stride not focusing on the hard parts.

Something got me thinking about being delayed and what that really means. My buddy's physical ability is so close to being on target, he understands so much and even though he can't talk he is amazing with sign language, and he has come so far. I think where the delays are really becoming obvious is in his behavior and level of maturity.

I can't stop myself from seeing how most 2 1/2 year olds act and doing that comparison dance. My buddy can't stop himself from dumping... well... everything. Plates of food, bins of toys, containers of blocks, a carefully built building. He will pull the pacifier out of the mouth of every baby we encounter. He climbs, wedges himself into small spots, and generally endangers his well being on a daily basis. My buddy refuses to walk next to me and hold my hand. I find myself carrying him or strapping him into a stroller all the time. When my buddy decides to run off he will not stop unless you physically stop him.

It becomes this crazy mix of abilities. My buddy can move like a 2 year old but with the impulse control of a 15 month old. He has this wicked sense of humor yet he still bites. He can put several signs together to have his needs met and at the same time has no clue that punching someone in the face hurts them.

Sometimes I worry that I am super overprotective and that I hover over him too much. I don't want my buddy to hurt others or himself and I know that he will if left to his own devices. I hate that I have to follow him all around and can't just let him play on his own. I dream about being one of those mom's at the playgroup or park that gets to sit and watch the kids play while chatting with the adults.

One good thing about delays is he still has a sweet baby way about him. My buddy loves snuggling in the rocking chair with me. Nothing can calm him down better than Mommy's arms. I plan on holding him in that rocking chair for as long as I can.

cave man

2011-05-02T16:51:00.000-04:00

My buddy has many qualities that closely mirror our relatives of the stone age. There is a lot of grunting and chest beating. His diapers have been known to smell like a woolly mammoth. Of course, he refuses to wear shoes. Although, perhaps if I strapped animal pelts to his feet he might keep them on.

My buddy can take down prey - the ever illusive sistersaurus - with a mighty hair pull followed by clubbing with a blunt object. Yes, he is a troglodyte in many ways.

His largest neanderthal similarity is in his table manners. I have begun to lose count as to the number of plates of food I have cleaned off the floor. I've tried every gizmo out there and none of them work for my buddy. When he decides he is done or perhaps he just wants the milk he flung to the floor earlier, there is no winning. I figure I have a few options.

I could go on like I am now but so far that's not working all that great for me. I can eat my dinner cold after he eats and totally focus my energy on him making it a learning process and testing my patience at the same time. I can just throw a few pieces on his tray and say to-the-heck with plates and forks and spoons... eat with your hands and be merry. I could convince my mom to move in next door and come over for every meal and she can do the hard work while I eat in peace and quiet. Oooooh... that one sounds good.

I suppose I can just accept that I am raising a cave man and the future Queen and start naming the ants.

the other milestones

2011-04-27T10:14:00.000-04:00

There are many milestones that parents look forward to and anticipate. Then there are those other milestones. Monkey bear has reached the talking back, name calling, sassy phase.

I am very careful with the words I use around my kids. I don't have a potty mouth in general and after being a nanny for 9 years, I learned how to avoid "bad" words. Unfortunately, monkey bear has influences in her life other than me. (imagine that!) I have very high expectations of her and her behavior but I'm beginning to wonder how long I can keep her from calling people names.

I'm also wondering how long I can keep my sanity with the negative behavior. I don't want to punish her all day long, but I will not accept being spoken to that way or having her hurt my buddy. Oh, the teenage years are going to be rough!

preschool

2011-04-21T20:17:00.000-04:00

So I've been concerned about my buddy going to preschool for a while. OK... more like obsessed. I think I started about 6 months ago. He still has 6 months to go before he starts school. I wasn't sure if I really wanted him to go at all. I know he is growing and maturing, but to me, he's still a baby. I feel like I have no choice for his preschool. For monkey bear we visited lots of schools, chose the one we liked and decided what time of day she would go and how many days a week.

Last week we went to an open house at my buddy's preschool. It is housed in an elementary school that was beautiful and clean. The woman who runs the program already had my buddy's paperwork and knew about him. The classes are small with lots of typical peers and the teachers know sign language. I felt relieved and for the first time, actually excited about this next step.

I think the hardest part will be sending him 5 days a week. Monkey bear will only be going 3 days a week and she's a year older. At the same time, it will be so nice not to be his therapist anymore. The pressure of Birth to 3 with four therapists all expecting me to work with him on a daily basis is a lot.

Next year will bring a lot of changes. There will be the hustle of getting two kids to two different schools and somehow getting everyone lunch and naps. And there will be me... letting go... just a little.

sorry

2011-04-05T18:14:00.000-04:00

Dear Little Boy at the Library:

I am so sorry you were there when my buddy and I came to the library today. You were so kind, coming right up to my buddy saying, "Hi" and introducing yourself. You even invited my buddy to play at the train table with you. My buddy, of course, ignored you and headed to the horses. When you tried to play with him, he pushed the barn away from you.

After a short while, you did get a nice greeting from my buddy - the face push and growl. It was done with a smile, so you took it in stride. You were so excited when my buddy came over to the train table to join you. Unfortunately, that excitement didn't last long as my buddy tried to swipe the one train you were playing with. Oh, and the look on your face when he threw that train... let's just be glad he didn't hit you with it.

I'm sure you were relieved when we left after a short while. I truly am sorry that my buddy got one last push in as I was trying to collect our things. I hope you can forgive us and we can meet again under better circumstances.

With Deepest Regret,
That Mom

words

2011-03-29T15:58:00.000-04:00

Most days I just enjoy my children and don't focus too much on what my buddy can't do. But lately I can't stop thinking how I wish he could talk. Sure he's got a couple of words but they aren't all that useful. I worry that he will go years before really talking.

Do I need to do more at home with him? Do I need to increase his speech therapy? Do I need to find a new therapist? Is there anything that I can do? What if there was some other approach I don't know about that could get amazing results?

I know nothing about teaching someone to talk. Monkey bear talked early and often, although she refused to talk in front of anyone other than me. My buddy has exceeded my expectations with his walking, climbing and running. I remember many months just trying to get him to sit up on his own.

We are going to start a picture system with him that will hopefully reduce some of his frustration... but probably not mine. I want to know what is going on in his head. He is so funny and does the oddest things. Monkey bear always asks, "Why does he do that?" My buddy is the only one that can answer that and he isn't talking.

milestones

2011-03-10T19:10:00.000-05:00

I love it when little milestones are met without even trying. When my buddy was a baby, we spent so much time doing exercises and pushing him constantly. I noticed every little thing he did. I suppose there is so much less going on with a baby than a toddler so it's easy to miss them now. I've also lowered my standards for myself and spend a lot more time playing and goofing off.

Here's a list of mini-milestones my buddy's met recently:

* No longer going through 6 bibs a day - down to about 2
* I can take my hand off his plate for 30 seconds without him dumping it instantly
* Will listen to "No" if you are standing right next to him - don't have to physically remove him
* He can walk up the stairs by himself just holding onto the railing
* Once in a while he'll hold my hand when we are out and actually walk the way I want him to
* He looks up in the tub so the water doesn't pour down his face
* No more open mouth, full tongue kisses

And the best one of them all...

* He signs "love you" and blows kisses every naptime and bedtime

friendly

2011-03-01T18:36:00.000-05:00

My buddy is the friendliest little guy around. Almost to a fault. He is never more happy than when surrounded by a gaggle of kids. My buddy, if he had his way, would touch each kid on the head, face, or belly while dolling out hugs to any takers. Of course he would alternate a gentle touch with a love pat. And by love pat, I mean a smack to the face or a push hard enough to knock someone down.

I love my buddy's love for others and really don't want to change that about him. I love that he is forgiving and holds no grudges. But he can't walk around slugging other kids and knocking them down. If you prompt my buddy to be "nice" or "gentle" he will listen... at least until the urge to hit is too strong. I don't think he does it to hurt. My buddy is genuinely surprised when a baby cries after meeting his left hook.

I'm not sure how to approach this behavior. Part of me just wants to let his teachers deal with it when he goes to preschool, but I'm pretty sure that isn't the right answer. I don't want to adopt a "keep your hands to yourself" rule. I think at the age of 2 he should be able to touch his friends. I guess I will just have to keep repeating my mantra of "be nice - no hitting" and hope that at some point it sinks in. I do know that there are far worse things than an overly friendly little boy.

random thoughts

2011-02-24T13:33:00.000-05:00

While I am too sleep deprived to do any deep thinking or put together long ideas, I do have a few questions and thoughts that have gone unanswered. My first being - who would have thought that almost 4 years into motherhood and I am still so tired. Why is it that I cannot get more than 2 consecutive nights of sleep? I have had this eye twitch for about 3 weeks now and I am going to have to take drastic measures soon.

What did my husband do to this keyboard in law school that makes it so you have to pound on the 'k' key?

Why do they poop as soon as you put a fresh diaper on?

How can I dream of being away from my kids and having a minute to myself and when I finally get away for a minute, I don't know what to do with myself? Didn't I used to have a life and spend all sorts of time alone?

Is it really possible when my buddy goes to preschool in the fall that he won't jump from table tops, dump every container he can get his hands on, and eat random things? Is school really my buddy-proof?

How come Daddy can't straighten the covers and wake up with monkey bear in the morning? Why does she demand only me?

What is it about escaping that is so intriguing to my buddy? Isn't the room full of toys and kids enough for him?

How can my buddy claw your eyeball out when he has only a tiny sliver of white on his fingernails?

Will the I-look-4-months-pregnant belly flab ever go away or will I always have to tuck it into my pants? Is there really any way to lose weight without being hungry? Why oh why did I waste my teenage years hating my cellulite-free body? I should have been walking around in a bikini showing that thang off.

What will life be like when both kids are in school? How will I define myself when Mommy is no longer the center of their life?

freedom

2011-02-16T20:54:00.000-05:00

There is the taste of freedom in my mouth. It's dawned upon me lately that I no longer have a baby hanging off various body parts, spitting up on any clean shirt I put on and making hours disappear with every diaper change and feeding. I can leave the kids with Daddy without worry or hesitation. I am stumbling out of the haze and into the light.

I may be drunk with the freedom. I've found myself curling my hair, applying nail polish and reading novel after novel. I suddenly have free time. Muffins have been baked and Hallmark TV movies have been watched.

My buddy is still a handful - don't get me wrong. But I can sit him down with a cup of milk and a bowl of crackers and he can feed himself while I enjoy a cup of tea. I napped on the couch while monkey bear decorated Valentine's. Next thing you know I'll spend all day eating Bonbons.

Having two miscarriages was devastating, but maybe this is how my life and my family were meant to be.

dance

2011-02-02T16:31:00.000-05:00

My buddy loves to dance. He has different dances he does to different songs. One personal favorite is the Diaper Dance (performed to Baby Signing Time). There is an abundance of butt in and out and all around. Monkey bear is into music from an old kids show - Hi 5. They have a song called 'Robot #1'. I do a mean robot dance (this is funny enough on its own considering I cut my head open on the chair rail picking food up off the ground just today). My buddy has his own version of the robot. Hysterical!

Monkey bear's dancing usually involves lots of spinning around and sticking her leg out. It's the same no matter what song is on. And it's never in time to the music. I think my dreams of living the life of a professional dancer through her is out.

One of my favorite qualities of my buddy is you can see every thought and feeling all over his face. He is truly present in every moment. Something I think most of us could use a little more of. When my buddy hears a song that is in need of some tail shaking, he drops the toy he's playing with and dances with wild abandon. The pure joy on his face is infectious.

playdate

2011-01-31T13:31:00.001-05:00

My buddy does not play well with others. Monkey bear had a preschool friend over for the first time today. Her friend has a little baby brother. He is now traumatized by my buddy. Not two minutes after he was out of the carseat, my buddy shouted in his face and bashed him in the chest. Immediate baby screams. His mom couldn't believe baby's reaction - he has two older sisters who are loud and in his face all the time. I told her all babies react the same to my buddy.

My buddy continued on to hit monkey bear's friend in the head, throw any toy he could get his hands on at the baby, as well as growl in the baby's face several more times. In between this wonderful display, he threw himself down screaming because the wrong music was playing and again because I wouldn't put on a TV show for him.

I spent the whole time being a referee and trying my best to get him to stop the shouting. It wasn't really the first impression I wanted to give this mom. In his defense, last night was not a good night sleep and he may (or may not) be coming down with something.

My buddy is becoming increasingly frustrated these days. He demands that the world goes his way - or watch out. He understands so much more than he can communicate. As his frustration rises, so does mine. I"m sure the lack of sleep (for both of us) doesn't help. I'm hoping we can help him with some other forms of communication so he can express himself better.

thankful

2011-01-24T14:55:00.000-05:00

I really am grateful for this life I am allowed to live. I tend to complain a bit, but when it comes right down to it I have never been happier in my life.

We are so lucky to have two beautiful, healthy children. My buddy could have had so many health complications but (knock on wood) we've avoided the major ones so far. It can be easy to focus on what he cannot do, but the things he can do are amazing.

I am fortunate that I get to stay at home with my kids. I can choose if it will be a muffin making house cleaning kind of a day or one where no toys get picked up and lots of books are read. I try my best to save money where I can and keep my eyes open for little ways to make money. I haven't come across any good making money options. The last one I googled - becoming a surrogate - had a big payout, but just a small disclaimer I couldn't get past: "willing to undergo abortion at the request of the parents if the pregnancy involves genetic complications."

I think this would have offended me even before I gave birth to a "genetic complication". I'm trying in little ways to get the word out that Down syndrome isn't a thing to be feared. Maybe some day I'll do more but for now the kids need me.

So for today, I'm just living life and focusing on the joy my two kids bring me. They have changed me more than I ever thought they could.

fashion

2011-01-19T15:04:00.000-05:00

Monkey bear is into fashion. I'm not sure where she gets it, but I do know it's not from me. My clothes scream, "please don't notice me." Any attempts I made at putting together an outfit in my youth consisted of copying someone else's look.

Monkey bear gets out of bed and heads straight for the dresser in the morning.. It's never just a shirt and pants. There are many layers to each look - pants, long sleeved shirt, dress, extra skirt, and just the right socks. Usually about the time I am in the shower the outfit is deemed, "not quite right" and she is allowed to change.

Then there is story time in bed at night. You can't just tell a story. Each character has to have a specific outfit - description provided by monkey bear. There are many dresses and fancy shoes that sparkle and don't forget the hat.

When we are at Target we spend some time strolling down the toy isle. Never once has monkey bear asked for a toy. Then we hit the clothing racks and she wants "just one new shirt ... please." When the bag of hand-me-downs comes from her cousin you would think it was Christmas morning.

It's amazing how girly one can become with no real role model. I'm afraid to see what the teenage years will bring.

typical

2011-01-10T20:13:00.000-05:00

When your child does not have special needs, the term that floats around is typical. I have a hard time thinking of us as not typical. Today, for example, was just a typical day in the life of a stay at home mom:

Everyone was dressed, fed, teeth brushed and decked out in winter wear ready for a much needed trip to the grocery store. I strapped my buddy in and went to turn the car on ... it wouldn't start. After a quick call to my car guy (aka. Grampa) we headed inside to call roadside assistance.

Once the car was working it was lunch and naptime. I spent naptime on computer duty. See my buddy likes to throw things at the computer when he isn't able to climb up onto the desk to pound on it with his fists. So the desktop bid its final goodbye. Luckily we have the laptop from law school. Unfortunately, it's up to me to transfer data - the most important being iTunes.

There are nights my buddy won't eat anything unless distracted by his favorite tunes. There went my alone time with monkey bear... straight to the computer.

Soon enough it was time for the grocery store. I started the car before I put anyone's coat on and we were on our way. While walking through the parking lot, monkey bear fell and scraped her knee. Inside the grocery store, I strapped my buddy into the cart and examined the knee. We were in need of a bandaid. Monkey bear rode in the cart and we headed straight for the first aid. Once a Kailan bandaid was applied, I thought we were in the clear... oh so wrong. Monkey bear declared she could not walk.

The only carriage known to man that my buddy cannot wiggle his way out of is the front of a grocery cart. The strap is high enough when added to the restricted mobility of the leg holes. So in order for monkey bear and her hurt knee to sit, I had to push them in one cart while dragging another cart behind me for the groceries. Have I mentioned it was a BIG shopping trip?

Halfway through the store after her mood had been brightened with ham and cheese and the promise of whatever kind of ice cream she wanted, monkey bear decided she could walk after all. I did the ol' carriage switcharoo and we cruised through the rest of the store with a much lightened load.

Once home, I unloaded the groceries while my buddy put a hat on the cat. That's when I noticed the poop smell wasn't coming from the litter box, but from the furry bottom of our furry friend. Once that mess was cleaned, the TV went on so Mommy could make dinner. My buddy has just discovered the TV. He is in love with 'Baby Signing Time' and requests it with fevered grunts and many signs. Fear ye who puts on a different show.

Home-made pizza. Sounds like a nice easy dinner. One pizza with butternut squash sauce, pepperoni and olives, another with half broccoli and a hint of cheese and half pepperoni and lots of cheese. Oh and a whole separate meal for monkey bear who only eats pizza the following day cold. Then there was the poopey diaper in the middle of all that along with every toy known to man spread out on the living room floor.

All I've got to say is thank goodness I'm a stickler for bedtime and they are out by 7:30pm because I don't think I'd make it much longer.

I guess my point is that while my buddy makes life a little harder, it really isn't so different from anyone else.

progress

2011-01-04T19:37:00.000-05:00

I had a check-up at the doctor's today - on a side note: What doctor's office does not carry People magazine? Don't these people know that I rarely get away from the kids and that 10 minute wait is some precious me-time in which increasing my celebrity knowledge is crucial?

Anyway, I get sent across the street to the hospital to have some bloodwork done. This is the same hospital where my buddy was born and spent 2 long weeks there while I traveled back and forth trying desperately to care for both my babes. My usual response upon walking into the lobby is sobbing. All the emotions of that crazy time come flooding back and I have a hard time controlling myself.

Today, I made progress. I was preparing myself for the emotional attack while walking up the sidewalk. Wouldn't you know, I walked in, paused for a moment, and felt nothing. It was just a hospital lobby. There was no grief attached to it. No remorse or could-have-beens.

I have always loved my buddy with every fiber of my being, but today I realized that I accept him. I have come to terms with the words that used to haunt me: Down syndrome. It is no longer a scary place where people wear mismatched sweat outfits and get stared at everywhere they go. It is a place where I am proud and where my buddy is the mayor and all who see him love him.

personality

2010-12-23T18:17:00.000-05:00

I am raising two very different children. Other than a deep love for each other, I don't think they have anything in common.

Monkey bear had her preschool family celebration the other day. The kids filed in and stood with their toes on a line and sang a song... at least that was the intention.

Monkey bear froze as soon as she walked into the room and had to be led to the line by a teacher. She did manage to do the hand signs but that was it. There was a lot of nose/eye/mouth rubbing and when the hand wasn't enough, she proceeded to lift her dress and wipe her face with that. Monkey bear did warn me ahead of time that she wasn't going to sing anything.

Meanwhile, my buddy walked from person to person like the mayor of Munchkinville. He smiled and waved at anyone who would look at him. My buddy loves the attention - looking each person in the eye then smiling that award winning smile. Of course, he took a break now and then to try and run out the door or lick the floor - it is hard to resist licking a shiny surface.

One of the most fun parts of parenthood is finding out who your children will turn out to be.

blindsided

2010-12-17T21:11:00.000-05:00

We were sitting down to a relaxing meal when I was blindsided. By relaxing meal, I mean that my buddy had completely covered the hand I use to hold his plate in food and had moved on to stuffing peas down his shirt. Then out of nowhere, monkey bear says, "Will my buddy be a Daddy when he grows up?"

After I swallowed the lump in my throat the conversation continued:

"No, he won't be a Daddy"
"What will he be?"
"Just a grown up."
"Why won't he be a Daddy?"
"Because he has Down syndrome he can't have kids."
"Oh, so he'll be a Buddy Walk guy."
"Uh sure. And he will be an uncle to your kids."
"Can I call him Uncle Phil?"
"You could, but his name isn't Phil."

It's funny how things you don't think of often come up in the most unexpected ways. I hate having to say it out loud and put it so plain to monkey bear, but I don't want to lie to her. I wouldn't want her blindsided by the truth some day.

the r-word

2010-12-12T10:58:00.000-05:00

After you are part of the Down syndrome community for a certain amount of time, you learn how everyone feels about the r-word. You also come to realize how different it feels to hear the word after Ds is a part of your life. You are also, inevitably, faced with how you will react when you hear someone use the r-word. The other day I failed miserably.

I was in the grocery store with monkey bear and my buddy. My buddy had spent the entire time throwing any item he could get his hands on out of the cart. I alternated between picking food up off the ground and holding his arms still while he screamed at me. We had finally made it to the check-out line.

I was unloading groceries with my back to my buddy. He was in arms reach of the 5 foot tall Andy's candies cardboard display. My buddy took the whole display down scattering boxes of Andy's candies every which way. I was at the end of my rope.

The teenage cashier was ringing our food up when her friend came over and was making silly noises. The cashier, under her breath, laughs and says, "You are so retarded." I stood there paralyzed and had a very long discussion with myself in my head.

For those of you who don't know me personally, I will tell you that speaking my mind is not something I do easily. I often find myself saying something in my head over and over and never being able to get it out.

So there I was considering just what I would say to her, wondering if she knew what Down syndrome was, feeling my face flush just thinking of the confrontation. Before I knew it, the moment had passed and I said nothing. I wonder if the situation were to happen again tomorrow if I would react any differently.

rewards

2010-11-29T15:10:00.000-05:00

You know it's time to get away when your 3 year old doesn't know what a 'babysitter' is. So off I go to an adult matinee for a break from the kids and some girl time with my BFF. (And, no, monkey bear still doesn't know what a babysitter is because she was home with Daddy.)

Sitting behind us were two women. Once the previews began, one of them started making comments way too loud. After a few minutes it became clear that she has some sort of intellectual disability and was there with her mom. As the movie begins - that would be the R movie with a lot of adult content - I get more and more uncomfortable hearing the questions from the daughter. You can tell the mom had no idea what the movie was about and is trying to figure out what to do. At one point the daughter said, "I'm 20 years old, I am old enough to see this."

After about 10 minutes the mom talks the daughter into leaving. It's funny how you go somewhere to "get away" and there is always something to bring you back home again. Lately, I feel like I've been only getting reminders of the negative side of Down syndrome. Stories about behavioral issues in school, kids wandering off, and reminders that even as a 20 year old adult, there are still concerns.

Today that changed. I got a call from my cousin who has a friend that just had a baby with Down syndrome. Her friend is deep in the grief stage. I can remember how that feels. But I am also privileged with loving a two year old with Down syndrome. The fear and grief is gone. It's replaced with a love that is beyond what words can describe. As cliche as it sounds, there really is something magical in my buddy that wouldn't be there without that extra chromosome.

I am thankful that Down syndrome has touched my life. I will never be the same and anyone who is open to love my buddy will be changed by him. Monkey bear will be a better person. The rewards greatly outweigh the cost.

fear

2010-11-14T20:29:00.000-05:00

Monkey bear has never been a particularly outgoing child. As an infant, she would cry if a stranger got to close to her. She refused to talk in front of anyone else but us for a good 10 months. As soon as the video camera comes out, she clams right up. When we walk through the mall and are accosted by the baby talent scouts, I just laugh picturing her standing silently in front of the camera refusing to perform.

But lately, true fear has been rearing its ugly head. Monkey bear is mostly scared of dogs and the dark. Today a new fear showed up and surprised me. We were sauntering through the mall just the two of us. Monkey bear earned enough stickers on her chart for going to bed without crying and we were out to get her a special something. She decided she really wanted tights and a fancy dress (not my child).

There we were, tights purchased and searching for a dress to match (not an easy goal because the tights are covered with rainbow colored hearts and peace signs). While admiring the huge Christmas tree and excited for a ride down the escalator - a treat without my buddy and the stroller around - we round the corner and spy Santa Clause.

As we descend, monkey bear becomes more and more frightened. She has a death grip on my hand and is beginning to climb up my legs. Once we are out of sight of Santa, monkey bear says she just wants to go home. I convince her to at least buy a dress first. She does not want to go and play, she does not want to come back to the mall until Santa is no longer there.

Who is afraid of being in the same mall as Santa?????

We LOVE the mall and use it as a free form of entertainment. Where do these fears come from? I try so hard to be understanding and empathetic.... tell myself if it was a tarantula sitting in that fuzzy green and red chair, I might not want to go to the mall either. But there is a part of me that just wants to tell her to buck up and be brave. I suppose we are in for some Santa desensitization.

baby steps

2010-11-10T09:04:00.000-05:00

After more than a year and countless dollars spent on sippy cups that didn't fit the bill, we have found a cup my buddy can use. So the cup was designed for babies 6 months old. At least he's not walking around with a bottle sticking out of his mouth. The cup also has spouts designed for babies 9 months old. Baby steps. Here we come!!

I did learn something about my buddy and how he drinks. He still swallows with his tongue out - much like an infant who is latched or drinking out of a bottle. I tried to drink with my tongue out ... it's not all that easy. So I can empathize with how difficult it will be for him to learn.

I was reminiscing the other night about when my buddy was little. I would try so hard to get him to laugh. I'd pull out all the stops and he would stare at me like I was insane. Now he thinks everything is so funny. It's such an amazing stage. I make a face, add a noise, and he is hysterical. His whole face lights up without and trace of self consciousness.

My buddy has also brought it upon himself to be the ambassador of happiness. Wherever we are, he catches the attention of any adult he can, says "Iiiiiiiiiii", and waves with a huge smile on his face. No one can resist. There is not a single person we have encountered that doesn't smile back and give a hearty, "Hi!" usually followed up with a, "He is so cute!".

Why yes he is.

decisions

2010-11-06T11:47:00.000-04:00

I have never been very good at making a decision. Especially those that will effect others. I am relieved that monkey bear chooses her own clothes - even if she makes quite a fashion statement. I even let her dress my buddy just so there is one less decision to be made. Children come with countless daily choices. What should I feed them, do they need a coat, should we skip nap today, are they getting sick... the list goes on and on.

When faced with a major life choice, I am stuck with fear of choosing wrong. Which is funny because I think that most choices can work out in the end. It just takes you down a different path, not necessarily a bad path. I fear disappointing others and forcing the ones I love to join me along that path even though they might have chosen to go a different way.

I am still gathering information in hopes that the light will suddenly appear and trying my hardest to listen to that voice inside of me.

limits

2010-10-28T19:50:00.000-04:00

There was a documentary on HBO called "Monica and David". Monica and David are two individuals with Down syndrome who fall in love and get married. I was expecting a really inspirational 70 minutes. The reality, for me, was quite different.

I loved that they found each other and their love was so pure. That part was really touching. But the reality of these two 30 somethings is not the reality I envision for my buddy. They live with her parents. Neither have a job. They cannot cook for themselves. They had trouble just stuffing envelopes.

I'm sure 30 something years ago there was not the support and knowledge that we have now. I know that the Birth to 3 system has done wonders in giving my buddy a jump start. I am also aware that there will be a limit to what he can accomplish.

I joke about wanting him to live with me forever and cruise around in the VW Cabrio I will have someday with the top down. But it's a joke. I never thought that he might really have to live with me forever.

There is one scene "Monica and David" that depressed me the most. They live in Florida in a beautiful apartment that has an ocean view. They could go down to the lobby and walk a block or two and sit on the beach. David talks about how he just wants to sit down there and watch the ocean. Monica tells him that they aren't allowed to.

I don't want my buddy to spend every day yearning for something out of his reach. I hope I am able to find that fine line of knowing his true limitations but not holding him back from his true potential.

worse

2010-10-25T12:17:00.000-04:00

When my buddy was born, I thought the worst words I would hear were, "We think your son had Down syndrome." Boy was I wrong. The day came when we were to be discharged. My buddy was taken into the Special Needs Nursery because his color was off and his temp was low. Here I was ready to bring my baby home and there he was with tubes up his nose and monitors connected to all parts of him.

I had to bring home an empty car seat and a hospital issued breast pump. I was so torn. Monkey bear was only 15 months old and needed me at home yet my newborn was still in the hospital. I spent the next two weeks pumping every 3 hours, caring for monkey bear and, with the help of my mom, traveling back and forth to the hospital.

All I had to do was step into the lobby and the tears would start. I carted my little cooler of breast milk with me and snuggled him as much as possible with all those monitors and wires coming out every direction. The only thing he required was the tiniest bit of oxygen. Every time they would try to turn it down, my heart would soar as his numbers stayed up. Then the crash as his numbers would slowly creep down and the oxygen was turned on again.

They finally decided there was nothing more they could do for him and had him transferred to CCMC. I watched them load my buddy into the incubator and onto an ambulance. The good news about being at CCMC was he finally had his echocardiogram and we knew for sure that his heart was healthy. The air is also magical there because after one day, his oxygen was off and he was ready to come home.

Halloween was the day we brought him home and my heart finally began to heal. I will never forget how wonderful it was to have both my kids in my arms at the same time.

gratitude

2010-10-18T13:31:00.000-04:00

My buddy is 2. I can remember the day he was born so vividly. The first emotion I felt upon hearing the words Down syndrome was heartbreak. But I think your heart has to break first, because loving a child with Down syndrome makes your heart grow so much larger than you ever thought possible. It's like the doctor who has to rebreak your leg in order for it to grow straight and strong.

My buddy is a whirlwind - in constant motion destroying everything in his path. But when he stops and gives you a smile or a hug. You just melt. Nothing else exists at that moment. It's an amazing thing.

We had our Buddy Walk this weekend. I am so moved with all the people who came out to support our family. There are moments where living with Down syndrome isn't easy and I know there will be many battles in our future, but with the help of those we surround ourselves with, each battle will be a victory. I don't have the words to express how much I appreciate each person who touches our life.

Down syndrome has brought so much into my life. In many ways, I am thankful that my buddy has that extra chromosome because it brings unconditional love.

music

2010-10-07T13:37:00.000-04:00

My buddy loves music. He will stand in front of the computer signing 'music' in hopes I will open up iTunes and crank up the volume. My buddy's Dance Mix has a healthy dose of Caillou, a big scoop of Toddles Favorites like 'The Wheels on the Bus' and 'Old MacDonald', a cup full of Baby Signing Time and a sprinkle of Laurie Berkner. If you try and stray from the mix, you must accept the wrath. And my buddy requests '5 Little Monkeys' to start off each dance party.

While I may tire of hearing children's songs in the car and tend to sing them in my sleep, it really does work magic. Car rides are always happy. I can have a few minutes to make dinner in peace. And most importantly I can shower.

I made a CD of my buddy's Dance Mix for his room. I plop him in his crib, crank up the tunes, and shower without worry. Before he could climb, I could barricade him in my room and shower fast. But now he can get into anything and does get into everything. I assume at some point I can leave him alone for a few minutes without fear for his life.

It's so hard not to compare him with Monkey Bear. She is so aware of the "Rules" and would never dream of breaking a rule. We never locked any cabinets or cleared off shelves and tables. You would have to say - a few times when she was younger - "Don't touch" and that was that. My buddy, oh my buddy, loves to start trouble. He is into everything. I fear the day he climbs out of his crib. I'll have to empty his room of everything and lock him in there at night.

My hope is that someday he will develop some impulse control and sense of this-might-hurt-me-if-I-do-it. But my hopes aren't too high for it happening any day soon.

next generation

2010-09-14T12:46:00.000-04:00

I can't believe that I went 33 years of my life without really knowing someone with Down syndrome. It seems hard to imagine. I graduated from a fairly large High School - my class was 450 students. You mean to tell me there was no one my age or even a year or two on either side of me with Down syndrome? Or perhaps they weren't included and were off in a separate space. And maybe they were there and I just didn't notice.

I have only one memory of actually interacting with someone with Down syndrome. I was maybe 9 or 10 and we went to this big party every year. The kids would all be set loose upstairs while the parents were downstairs. More often than not, we would start a huge game of hide-and-go-seek. There was a girl there with Down syndrome who was close to my age. We convinced her to stand really still like a statue and that would be a good hiding place.

I can remember wondering why she believed us and I couldn't really figure it out. Now that I think back on it, I am embarrassed about my actions. Sure, we included her and let her play our game. But we treated her like the little sister you didn't really want tagging along but Mom made you play with.

Now when I see an individual with Down syndrome, I feel like I want to acknowledge them with a little "I'm part of the club too". Of course I don't because that would just be odd. I'm so proud of my buddy and feel honored to be his Mom. I hope that the next generation of kids growing up will think nothing of having a friend with a special need and having kids of all different abilities a part of the classroom.

letting go

2010-09-10T20:52:00.000-04:00

Monkey bear started preschool this week. I'm not sure who was more traumatized... her or me. She was so brave and put on the excited face. But when it came time for us to leave her alone, she just lost it. First there was the look of terror in her eyes followed closely by the quivering lip. Then came the pleas of not to leave her with big crocodile tears. The worst part was the heart wrenching screams as I ran out of the room as quickly as possible.

When we picked her up she said she had so much fun and wants to go back. Monkey bear claims she won't cry again. She talked about how she took big breaths to calm herself down and did a Caillou puzzle with tears still in her eyes. Being a stay-at-home-mom without a consistent babysitter, she rarely gets left with anyone. I know that she needs to spread her wings and rely on herself more.

I never imagined how hard it would be for me to let go. I understand that the most important job of a parent is to bring out the best in your child and then set them free into the world. Letting them discover their place in the world is as vital as making sure they eat their fruits and veggies.

We were on vacation recently. Monkey bear was too scared to sleep in the bed by herself so she climbed into bed with me. I must admit, I don't do much better sleeping in a foreign bed than she does. While I was laying there, feeling like a child myself, I just stared at her amazed that I was her Mom. How could this little child rely on me so much for her safety and comfort when I couldn't even comfort myself? How on earth did I end up being in charge? It was a surreal moment that quickly passed.

I love that my children can constantly amaze me. I love that look in their eye when you can just see the love bursting out of them. No matter how many long days there may be when I don't think I can make it for even a minute more, every second is worth it. Monkey bear may have 5 hours each week away from me followed by years of school and eventually moving out on her own. But I know that there will always be a part of her that loves me in that special way reserved for your mom.

worries

2010-09-01T20:05:00.000-04:00

I was prepared for motherhood in all the practical ways. But there were a few things that caught me by surprise. You can never imagine how your heart will grow with each child. People always tell you that you will never be the same, but the words don't even come close to how it feels.

Along with all the love comes a boat full of worries. I never knew how each fever and cough would tear me up inside. For me, the anticipation of each illness is so much worse than the reality. I have a feeling that monitors are the work of the devil. I can't go for more than a few minutes not being able to hear them.

There are the daily troubles. Are they getting enough sleep? Is their diet balanced enough? Should I be doing more art projects or playing more board games? Why are they crying?

I also worry about what the future will bring for both of them. Will they have broken hearts? Will they find their place in this world? Will they find true friends? Will they live long, healthy lives? It's so hard to imagine these precious little ones as teenagers trying to navigate through peer pressure. Will they be prepared and have enough confidence to make it through?

Then there are the worries specific to my buddy. Will he be able to live independently? Will the kids be mean to him? Will kids be mean to monkey bear because of my buddy? Will it hurt so much more when he is teased as a teenager?

I'm not sure if my heart will every stop feeling unsettled. Is there ever an age when your kids are free from your concerns? I know, even at my ripe old age, when my mom comes to visit, she tells me when it is time to go to bed.

new moves

2010-08-19T12:45:00.000-04:00

My buddy has developed some new moves. His early intervention therapists say some kids need to learn how to play. As far as I can see, he does just fine on his own... with a big dose of inspiration from monkey bear. He will feed the baby, hug the baby and cover her with a blanket. That is until he realizes his true nature and then baby is body slammed into the ground.

My buddy's new signature move is a full body tackle while screaming so hard the veins in his neck bulge. He is strong enough to knock me over if I'm not prepared and he takes monkey bear down every time. It really is funny until you are at a playgroup and he thinks little Julia is on the opposing team. I suppose he could stand to learn some appropriate play.

His sneakiest move consists of starting trouble across the room while you are sitting, say, at the computer. While you head over there to clean up said trouble, he makes a beeline for your chair. My buddy can now climb into a chair in the blink of an eye and open 10 windows on the computer before you even realize he's not right behind you. My signature move now includes sprints across the room to stop trouble and then back to the chair before new trouble arises.

The funniest move my buddy has gets pulled out in a group setting. If we are at the park and there are a group of adults sitting around watching the kids, my buddy will single one out and walk almost all the way up to them. He will then stop with his legs really wide, tilt his head to the side, stick out an arm while wiggling his little fingers, and say "aaahhhhh". (that's how we say Hi in these parts) It never fails to get a smile along with a, "how cute is he!".

I could go on and on about all the things he does. I think monkey bear said it best: "He is the one in our family that makes me laugh."

I would never...

2010-08-10T20:33:00.000-04:00

I was a nanny for 9 year and had compiled a grand list of things-I-would-never-do when I was the mom. Oh, how the mighty have fallen. Here's just a short list of the rules I've broken thus far:

* chocolate before 9:00am
* pick my child's nose
* couch, carseat, and carpet all encrusted with half chewed crackers
* donuts a few times a month
* TV as a babysitter/pacifier
* share a lollipop with my child
* out in public with mismatched clothes with a hint of lunch on them and no shoes

Oh, motherhood is nothing like you think it will be. I do however have my proud moments. For one, my kids have never eaten fast food (unless you count the munchkins). We laugh full belly laughs every day. I shower them with hugs and kisses with plenty of I-love-you's on top. And I really try and listen to them... well just her for now. My buddy's biggest heart-to-heart is a deep need for more crackers.

There are so many amazing moments in the life of your children. Sometimes it's hard to focus on them when all you can see is the trouble and the whining and the nonstop needs. I've been trying to tell myself that they won't be young forever and don't sweat the small stuff. Monkey bear is terrified of dogs - no big deal. My buddy still uses a bottle - chances are he won't when he is 16. They both want to be in my lap at the same time... bring it on. I will take every snuggle I can get now and store it away for when they are teenagers.

I spent years not knowing what I wanted to do with my life. Wondering who I was supposed to be. Then all of a sudden these two amazing little beings plopped into my life and made me Mom. I am right where I belong.

taboo

2010-07-26T06:34:00.000-04:00

I have thought long and hard about this post. Even as I write it, I am not sure if I will actually publish it or not. I have a completely selfish reason for writing - my sanity. For those with a weak stomach concerning "female issues" feel free to stop reading now.

I'm not sure how to say this with class, so I'll just get it out there. I recently had a miscarriage. I wasn't experiencing my usual pregnancy symptoms so I had some concerns, but didn't really think it would turn out this way.

The hardest part for me is the taboo that surrounds it. When an old friend asks if you are going to have more kids, you have two choices: (1) smile and say we'd love to have another (2) tell her the truth and stop conversation completely. I am not embarrassed to tell people, but I know it will just make them uncomfortable and there is nothing they can say that will help.

I have searched the internet looking for insight. I can't exactly place how I feel. I found a lot of websites with advice on how to memorialize your baby and mourn for the loss. But that doesn't describe how I'm feeling. I feel like an alien force has taken a hold of me and they are running an experiment. Can she chop dinner while sobbing quietly so the kids don't notice then plaster on a smile?

I don't have problems conceiving, so I know I can have another, if I so choose. I never saw a heartbeat and I said more than once that I didn't really feel pregnant.

But if it never felt real, why am I so depressed?

I blame those darn hormones. My body barely had time to register the immense change in getting pregnant and now it has to compensate for the hormones leaving. Not to mention that every time I see the blood, I can't help but think... is that a little part of my baby? Morbid, I know.

My logical side knows that it happens for a reason - usually something chromosomal. Then there's the emotional side... did the baby have Down syndrome and the universe didn't think I could handle another? And of course, there's the fear of what will happen if I get pregnant again.

The only light in all of this is that I didn't tell the kids. I don't think I could have handled explaining to monkey bear. I feel confident that with a little bit of time and hormonal balance, I will be myself again. I just have to make it there.

happiness

2010-07-14T12:44:00.000-04:00

A few weeks ago I read a book and I can't get it off my mind. The book was about one woman's pursuit of happiness. She goes on a year long search and in doing so tries all sorts of different things to boost her own happiness. You would think that this is what has stuck with me. Unfortunately, that is not the case. Out of 294 pages, one sentence - really just part of a sentence - has been dancing around my head.

In August, she decides to "contemplate the heavens" and one way of doing this is to read memoirs of "catastrophe". I think the aim is to become more aware of the preciousness of ordinary life. Along with memoirs on cancer, brain tumors and death, she reads a book about a woman who had a baby with Down syndrome. You think of my life as a catastrophe?

It feels like being in middle school and overhearing some girls make fun of your best friend.

I understand schadenfreude and the thought that things could always be worse. I just never thought my buddy was worse. And I can't believe that I take it all so personally. I've been trying to get it off my mind. But it's haunting me.

It doesn't help that I had to fill out a medical history and it asked if anyone in my family had: Down's syndrome (mongolism). So now I (the person that hides from any confrontation) has to go to my doctor's appointment and let them know that it is now known as Down (no 's) syndrome and the word mongolism is outdated and somewhat offensive.

There are some things you can prepare for, but there are always those things that sneak up on you just when you least expect if.

three

2010-07-06T16:13:00.000-04:00

Monkey bear is three. It hardly seems possible. I can remember those newborn days like they were yesterday. She wouldn't latch, wouldn't sleep unless she was in my arms, and forced me to tears daily. Oh, the good ol' days. I remember blubbering multiple times a day, "I always wanted more than one child, but I can't ever do this again."

Now my little monkey bear is as close to an angel as a three year old can be. She has the biggest heart I've ever seen in a child. The patience she has for her little brother and endless love for those who surround her is inspiring. She delights me daily.

I try hard not to brag too much about her. But man she makes it so hard. Monkey bear listens when I ask her not to do something, shares whatever she may have, and lets me know when my buddy needs something. Have I mentioned that she is brilliant as well?

Of course she has her shortcomings. Don't we all? When faced with a group setting she refuses to utter a single word. She won't even shake her head when asked a question. I would be lying if I said monkey bear never had a single meltdown, but lucky for me she saves them for home.

I have loved these past three years watching her grow and change and I look forward to a lifetime of seeing who she will become. It is amazing how big your heart can grow when a child enters your life.

trouble

2010-06-22T20:25:00.000-04:00

Trouble. That's what we call my buddy. This morning from the shower I hear a frantic monkey bear calling my name. I look out of the shower to see my buddy standing on top of the hope chest. There goes my morning shower. After climbing over the hope chest, he gets to Daddy's alarm clock - which he turns on and then promptly throws behind the night stand only to climb to the top of the night stand to look for it.

This takes all of 37 seconds.

We say he goes from 0 - 120 mph. Zero is when he is asleep and 120mph is every other minute of the day when he is awake. The second he wakes up he sits right up and stands in our bed trying to climb over me and into a pile of trouble.

This evening, while trying to make dinner, another frantic call from monkey bear. This time my buddy has pulled out the desk chair, climbed on up, and has one foot on the desk while pounding on the computer. Every child-proofing thing I can find only works for a blissful week or two. I am considering selling all belongings but toys. Who needs chairs, couches, or desks?

I wouldn't mind if he climbed into a chair and sat for a while. But he stands and walks around with no regard to the fact that he is a few feet off the ground and if you step the wrong way, gravity will take over. I'm not sure what my buddy hears when I say, "NO". I think he hears, "Please keep on doing what you were just a little faster and more frantic before I reach you and physically remove you."

Of course there is that part of you that hip hip hooray's the fact that he can pull a chair out and then climb up, isn't lazy, and wants to be into everything. For me, that part exists while he is sleeping and I am finally sitting down.

sleep

2010-06-09T13:10:00.001-04:00

My buddy still does not consistently sleep through the night. A good night, he'll make it until 5am where I snuggle him in bed with us and he falls back asleep for another hour and a half. Typical nights he wakes one to three times and just needs a friendly "Shush" with a little pat on the back and then he wakes at 5 am to join us in bed.

But then there are those nights where he wakes up and just needs to be held. I have several different thoughts at all hours of the night. One is typically - am I ever going to sleep again? 19 months is a long time to be deprived of sleep.

Another common thought is more of a worry - what is wrong? Why is he waking up so much? And then I mentally go through all the possible things that can be wrong and get myself all worked up.

The nights I like the best (besides the ones where I actually sleep) are the nights I just stare at his face in the dim light and marvel at my little boy. I imagine what it must feel like to be him. Something wakes you in the night and then, out of nowhere, this person comes to scoop you up, hold you close, and murmur sweet words until you are asleep again. I wish there was someone big enough to wrap their arms around me and hold me close. I try and savor these moments because it won't be too long before he no longer fits in my arms. And then that terrible day when he doesn't want me kissing him and hugging him.

It's so easy to get caught up in the hard times, but I try and tell myself that they won't be little forever. He will sleep and then so will I. Someday that stinky baby breath will just be bad breath and won't be nearly as sweet. All that soft skin will be gone and he won't fit into that special spot on my shoulder nuzzled into my neck. I want to always remember that peaceful look on his face when he knows he is safe in Mommy's arms.

words

2010-06-02T12:07:00.000-04:00

My buddy finally did it. He finally spoke. If I point to a picture of me or have him touch my face and ask, "Who's that?" he answers with an enthusiastic, "MA!". And when he sees a picture of Daddy, he says, "ma ma"... close enough for me!

Better than hearing that little voice - which I assure you is amazing - is the look he gets on his face. I, of course, overreact with a "Woo Hoo" and big hug. My buddy couldn't look more proud. He smiles and looks as if he personally achieved world peace.

Oh and monkey bear. She will jump up and down saying, "Yay he just said Mama!!!" I can't wait for speech therapy next week. I hope this is the beginning of a word explosion for him. I really look forward to talking with him and learning more about who he will be.

why?

2010-05-26T20:45:00.000-04:00

This evening was a little different from most. One reason is that my buddy went to bed early leaving me and monkey bear to enjoy a little one on one. As she was decorating cards for her cousins birthdays, she started in on the questions. Tomorrow we have a new teacher coming for my buddy. She's part of his early intervention team.

Monkey bear's first question was, "Why is the teacher coming tomorrow?" I give my usual answer of, "My buddy has Down syndrome and needs some extra help learning different things." The conversation continued from there....

"Will I have Down syndrome?"
"No, it's how my buddy was born and he'll have it his whole life."
"Why does he need a teacher?"
"His brain is a little different and he just needs extra help."
"How is my brain?"
"Uhhhh, your brain is regular."
"Was I born with Down syndrome?"
"No, just my buddy. He'll have it forever. It's just how he is."
"Why does he have Down syndrome?"
"It's just how he was made... just like you have brown hair. Do you want more stickers?"

I don't want the words Down syndrome to come as a surprise to my kids, but at the same time, I don't want monkey bear to think that my buddy is all that different. I hate to focus on it, especially when I know that an almost 3 year old has no real way to understand. If I'm being honest here - I'm not even so sure I totally understand. I don't know what goes on in his head.

I can't fault monkey bear for being so curious and for the part of her that wishes she has Down syndrome too. As far as she sees, he gets lots of adult playmates and away with WAY more than she gets away with. It's a fine line between treating him the same and giving him the intervention he needs to be the best he can be.

kids like mine

2010-05-22T13:31:00.000-04:00

My friend is taking a children's literature class and one of her assignment was to look at older children's books and compare them to newer ones. One thing she noticed is that books in the 50's were more homogeneous. Nowadays we see every race, gender, and hair color represented. That got me thinking.

How many books, TV shows, advertisements or movies have kids that look like mine?

Very few.

You'll never pick up a main stream children's book and see someone with Down syndrome in the mix. You never see a Pampers commercial or formula advertisement and see my buddy... mostly because he doesn't follow direction well and refuses to pose for the camera... but that doesn't change the point that they aren't out there. I have found specific Down syndrome books or catalogs for kids with special needs and, thankfully, there is Sesame Street.

I really considered taking the matter into my own hands and contacting a talent agency and getting my buddy out there and raising awareness and pushing for our rights. But then I realized who I was (and who he is) and thought better of it. I'm not sure what I can do, but I do hope some day to flip through a book, and randomly, see a child with Down syndrome doing just what all the other kids are doing. No special mention. No bells and whistles. Just hangin' with the other kids joining in the fun.

messy boy

2010-05-17T20:17:00.000-04:00

Oh the bottle saga continues. I've been working forever to get my buddy to drink out of anything but a bottle. Just when I gave up and decided I would wait to push the issue, he decides to chew holes in the bottle nipples. My buddy was finally able to hold the bottle himself while sitting up and be independent with it. Of course, the milk poured down his chin soaking his shirt. He has a knack for taking a swig then, before swallowing, shifting the bottle to the side for a little chewing action, thus dribbling milk down his face.

This kind of messiness is nothing new to my buddy. Monkey bear has been heard saying, "I love my messy boy." When my buddy decides that the mouthful of food he currently has isn't quite right and he would prefer a sip of milk, he simply spits the food out. If you offer food he doesn't want. Instead of signing "no" he takes then food then lobs it across the room.

I've tried giving him a sippy cup with no valve in it. He uses it to pour all over himself, the floor, the cats, and generally anything within reach. But not so much in his mouth. For whatever reason, my buddy will/can not suck on anything other than the bottle. He has not figured out that in order to get something yummy out, you need to suck. My buddy simply bites. Not very effective.

I've tried every method I can think of or get others to recommend. Nothing. It's not easy to teach someone how to suck on a cup. I'm considering going cold turkey on the bottle - with maybe just one before bed. Perhaps it's that stubborn I'm-going-to-hold-out-for-a-bottle streak that has been holding him back. We all know how stubborn my buddy can be.

busy, busy

2010-05-12T20:14:00.000-04:00

I wonder if all the appointments will ever slow down for my buddy. This week we have a chiropractor (to help with reflux), speech therapy, physical therapy, and occupational therapy. All that attention and focus on him... no wonder monkey bear is regressing.

We are in a phase of baby talk, carry me, snuggle me, put on my footie PJ's all day, etc. I indulge when possible, but I put my foot down at leaving the house in footie PJ's. I'll also sneak in a, "Mommy can't understand you when you talk like that so I don't know what you want."

In her defense, my buddy gets more than his fair share of attention. Being younger, he just isn't able to do what monkey bear can. I still need to feed him (assuming I want less than 70% on the floor), there are exercises to do, sign language to learn and teach, tons of encouragement, lots of hand-over-hand to teach him different skills, and all the therapies... not to mention the doctor appointments.

I assume at some point life will even out and I won't feel so controlled by the never ending list of "trained professionals" we must see in order for my buddy to be the best that he can be. I don't want to hold him back in any way, but at the same time, there are days when I resent all the people involved in my parenting.

looks

2010-05-07T14:04:00.000-04:00

Everyone loves to play the who-does-the-child-look-like game. Monkey bear gets it all the time - strangers, close relatives, and people we see once in a while. But not my buddy. Very few ever make a comment on who he looks more like. It is because all they see is Down syndrome?

I find my buddy irresistibly cute (so I am a little biased) but I also see Down syndrome all over him. When we are at the park and a well meaning mom says how good he is walking or how cute he is, I wonder, "Did she leave out - considering he has Down syndrome." Can strangers tell? Do they see it in his almond eyes and squashed in nose? Or do they genuinely think he is cute and a great walker?

As for me, I see it both ways. My buddy warms my heart and is adorable. He strides up and down the hallway with such confidence and pride. But I also see the hours of physical therapy that got him to walk. And the slightly flat side to his head because his low tone as a baby caused him to favor one side.

I sometimes find myself wondering - is my buddy acting that way because it's just how he is or is it the Down syndrome. As if Down syndrome is something separate and not all jumbled up in the DNA that makes us each unique. I just read a quote that said, "What if people with Down syndrome don't have an extra chromosome, and we're just missing one?"

Now there's a new way to look at things.

only 2

2010-04-23T13:28:00.001-04:00

Ever so often, I need to remind myself that monkey bear is only 2. She is so responsible and well behaved that I tend to forget and expect too much of her. The past couple of weeks I have noticed her trying to get more attention.

When my buddy was a baby, I made sure to say, "Mommy has to feed the baby and then I can ____". I didn't want monkey bear to think that it was the baby mucking up the works. But as he grows, I've stopped that and now it's more like, "My buddy is starting to fuss, we need to leave the playground." Or, "My buddy has (insert therapy here) so we need to stay home this morning."

I can see her frustration and desire for special time with Mommy. It's such a fine line to walk. My buddy needs more of me - physically because he's still young, time wise to attend to all of his therapies and Dr appointments, and emotionally because he is entering into the zone of behavioral issues that need to be dealt with. But I know that she needs me too.

I think I'll have to do the dishes while they sleep and carve out some snuggle time.

smile from the heart

2010-04-20T15:38:00.000-04:00

Yesterday we went for a ride on a carousel. Monkey bear decided that my buddy wanted to ride the elephant and she would be on the horse right next to him. We paid the fare, strapped the kids onto their respective animals, and waited for the fun to start.

My buddy was squirming all around trying to escape. No fear that he is 4 feet off the ground on a giant mammal. Attempting a cowboy like dismount off one side while Mommy holds one with one hand trying to get a picture at the same time, I thought it was going to be a long ride.

Then the music started and we began to move.

I don't think I've seen a smile so big last for so long. I swear it started in his toes and filled every cell in his whole body. He could not get enough. There is something in that smile. No thoughts that someone may be looking, or perhaps you should "control yourself". Just the feeling of pure joy written all over his face.

One dream I have for my buddy is that he never loses that smile.

first dinner

2010-04-14T15:37:00.000-04:00

Last night was the first dinner my buddy ate that I didn't have to grind something up. We've been at this stand still for months and have made no progress as far as eating more solid food. I was under the impression that he was physically unable to eat and swallow certain textures. Turns out I was wrong.

We had a double team - OT and Speech Therapist - come over for lunch to see how my buddy was chewing and see if they could help. I made a smorgasbord of food he usually spits out. And wouldn't you know, my buddy was able to eat it all.

Turns out he wanted a fork of his own.

What I thought was a physical issue turns out to be a behavioral issue. There are certain foods he won't touch if you just put it on his tray and let him at it. He'll simply put them in his mouth, spit them out, and throw any remaining food straight to the floor. But put it in a bowl and help him stab at it with a fork... suddenly he eats.

Of course, you have to hold the bowl still so he doesn't toss that to the ground as well. And those bowls with suction on the bottom are no match for his super-human strength.

While we are on the subject of behavioral issues, I fear I may be in for it with my buddy. When he gets frustrated, he started bumping his head on the ground. And when he gets really upsets he "freaks out" - flailing his arms, forgetting to breath, turning purple, mouth wide open, and a crazed look in his eye. I feel like 18 months is too young for that.

The hardest part of it all is I don't know how much I can expect of him. When I tell him something, it's hard to tell if he is just ignoring me or truly doesn't understand. I have high hopes for him and treat and speak to him like I would any other child, but I know that he is not "typical" and I can't expect him to be on target for all aspects of his development.

I guess for now all I can do is give the boy a fork.

joy

2010-04-12T14:13:00.000-04:00

I just need to mention the joy of walking. My buddy is fast becoming a pro. It has been the most surprisingly enjoyable milestone to date. He no longer walks with his arms high in the air. They now swing about waist level. He has this really wide stance and a swagger as well. My buddy looks like a munchkin cowboy. For some reason it just cracks me up.

Today we went for a walk. The first part was Mommy's exercise time - pushing a double stroller. Then as we rounded the corner to the portion of the path that goes nice and flat by the pond, the kids got out. Monkey bear ran ahead and would shout, "I am so far away!" then run back to us. My buddy swaggered along thrilled with the freedom. He actually listened when I asked him to stay on the path. There were a few stumbles, but no major falls. My buddy walked farther than I could imagine and his cheeks were rosy from the exertion.

It was pure bliss.

While I am on the topic of joy, can I just say how fun it is to watch your kids play together? Monkey bear is the most patient 2 year old I have ever seen. She will build a tower and just laugh when my buddy comes barreling through. She turns toys on for him and gets him things he can't reach. She always shares her snacks and tells him, "I love you my buddy".

And the smile he gets on his face when she enters the room. Forget Mommy and Daddy, all he wants is his monkey bear.

days

2010-04-06T13:19:00.000-04:00

I realized lately, that there are hours... even days when the words "my son had Down syndrome" don't even cross my mind. I think the biggest impact is the fact that he is walking. Our physical therapy is lots of walking and he does that all on his own. No more setting aside time and the guilt of missing a day. Just yesterday, I let him out of the stroller and let him walk around the waiting room of the eye doctor's.

Of course my buddy wants to walk where he wants to and refuses to hold my hand. If I stop him from going a certain way, he plops down, makes an unpleasant noise, and signs "no". I'm sure that stubborn streak will haunt me.

My buddy seems just like any other soon-to-be 18 month old kid. He laughs, plays, walks, interacts with kids, waves "hello" to everyone, cries, hugs, communicates, and loves. He is fun to be around and keeps me on my toes. I was writing in his baby book today and he knows 16 different signs. He gets his point across and that is all that matters.

I used to search for the silver lining in all of this. I think the silver lining is my buddy. As the days pass, it gets easier and easier and so much more fun. I am excited to see who he turns out to be.

hypotonia

2010-03-27T14:17:00.000-04:00

While changing my buddy's diaper the other day, I got to thinking about all the "side effects" of hypotonia. Hypotonia, aka. low tone, is the ability of a muscle to respond to a stretch. It has nothing to do with the strength of the muscle. I looked it up and the best description for me was - low toned muscles do not fully contract before they again relax, they remain loose and very stretchy. Our physical therapist said it's like my buddy has some extra gravity that he has to work hard against. Kind of like the opposite of floating in water.

You may be asking yourself - why this thought during a diaper change. Typical babies, you grab the ankles and push them towards their face and the bottom magically lifts. Not my buddy. You can put his ankles next to his ears and his bottom is still flat on the ground. I have to physically lift his ankles up into the air... easier before he reached 26 pounds and knows how to squirm and roll.

My buddy wears cloth diapers - which I love. But at night, you need to "double stuff" the diapers which adds a little to the bulk. Usually not an issue unless you sleep on your stomach with one leg hitched up so your foot is next to your ear and your knee is pointing out, causing a gape and allowing lots of leaks. We are in disposables at night.

As an infant he was so hard to hold. It's not easy to pick up a limp noodle of a baby and even harder when they are soapy and wet. It was so long before I could sit my buddy on a hip and hold him with just one hand. And the low muscle tone also impedes speech development.

Yet with all that is stacked against him, here he is at 17 months old walking. The past week he has perfected his skills and now walks 90% of the time in the house. He even walked around a playdate and at the mall playground. The "normal" range for walking goes up to 18 months. We hit a milestone for typical kids!!!! I think I owe it to monkey bear. She has walked up and down the hallway with him, encouraging him along the way, for countless hours.

1 : 1700

2010-03-20T20:26:00.001-04:00

I am in the process of changing my doctor, so I had requested medical records from when my buddy was born. While flipping through, I notice the lab results from my blood work testing for risks of chromosomal abnormalities. My risk of having a baby with Trisomy 21 was 1 in 1,700.

It takes me back to when I was pregnant with monkey bear and I had the same blood work done. I came back with an increased risk for Trisomy 18 - which is basically deadly for the baby. None live past the age of one. So we went ahead with the amnio and endured the excruciating wait. As it turned out, the baby was fine and we found out it was a girl. A very good day indeed.

It's amazing the odds for my buddy to come into our life. I had a 0.06% chance of having a baby with Down syndrome. I am 5 times more likely to die from falling down. I don't really believe in a greater being, but I do feel like my buddy was out there looking for us. He knew we needed him, even if it took us a while to realize that ourselves.

magic

2010-03-13T14:53:00.002-05:00

I can’t seem to shake the guilt I feel about the day my buddy was born. It should have been a day of joy and unbridled happiness. How could I have looked at him and felt such sadness and loss? I’m not sure I can ever make that up to him. I find myself giving him extra snuggle time and his cheeks are raw from all the kissing. I need for him to know that I am overjoyed he joined our family.

I hate that I think of his birth and remember all the pain. I wish someone could have made me see that it’s not a big deal. Life hands out WAY bigger deals that Down syndrome. With that extra chromosome, comes so much. He will meet a kid for the first time and kiss them. So maybe most kids don’t appreciate the open mouth slobberyness of it all, but it’s the thought that counts.

My buddy is one of the cutest kids I’ve ever seen, but for some reason I can’t capture it on film. Every picture of him is lacking. I read recently a mom referring to the extra chromosome as pure magic… I agree. There is a sparkle when you are around him that just doesn’t translate into pictures.

In the past, I’ve searched for something that made me unique. I think being my buddy’s mom is exactly what I was searching for. I can’t wait to watch him grow and see all that he can be.

shouting

2010-03-10T14:51:00.001-05:00

My buddy is driving me up a wall. Whenever he wants something, he screams at me. He stands at the gate in the kitchen shouting, he hollers whenever a toy isn’t turned on, he bellows when food isn’t shoveled into his mouth fast enough. I am so tired of being shouted at. He has plenty of signs that he knows and uses, but to get my attention or, god forbid, I don’t move fast enough, out comes the screaming.

I am working on different ways to change this behavior, but so far no luck. I’ll give him this much, the howling is effective. It gets my attention every time. I can only ignore it for so long before it pushes me over the edge. I can be heard mumbling … “someday he will talk, someday he will talk”.

I love that my buddy knows what he wants and is trying to communicate his needs. I really do appreciate each and every milestone - like when he wanted me to hold him instead of Papa. I am confident that someday he will say “Mama” and I will tire of hearing that as well. Hopefully, I’ll look back to these days and relish in hearing my name over and over again.

frustration

2010-02-15T14:50:00.001-05:00

Drinking out of a straw. The proverbial straw that broke the camel’s back. I guess that makes me the camel. There is no good way to teach someone how to use a straw when they really don’t want to learn how. As soon as my buddy sees that straw coming, he throws his head back and yells at me. He has no words, but sure does get the point across.

The fact that he can only drink out of a bottle doesn’t bother me too much. I am more concerned about the future. I want him to be able to speak as clearly as possible in order to make his adulthood easier. There is a school of thought where the stronger his lip/tongue muscles are, the better his speech will be. Sucking on a bottle does nothing to help the situation.

I am a patient person. But I feel like we are getting nowhere. There are no mini victories along the way. Just frustration.

first steps

2010-01-30T14:48:00.000-05:00

My buddy took his first step!!!!!! Granted, it was entirely accidental and he hasn’t done it since, but I saw it with my own eyes. Of course, he was walking to me. The only other person around was monkey bear. She worked up a bit of enthusiasm, but not the response I was looking for.

My buddy has been standing unassisted over and over again. He will stand up, hold it for a few seconds, plop down, and look around for applause. Monkey bear is a pro at this. She calls me out from the kitchen every time he stands up. I can sit and just watch him. I never thought that at 15 months he would be standing on his own - with walking only a step away.

It’s funny. I hoped for walking by 2 years old. I am fully confident that milestone will be reached before my secret goal. I never had a thought about being able to drink from cups. And here we are … only able to use a bottle and only if leaning back. As they say, the highs are higher but the lows are lower. The therapeutic straw cup just came in the mail today, so off we go to reach another goal - even if we didn’t know it was there.

But man, how that boy loves to move. He can commando crawl faster than I can walk. He has mastered crawling up the stairs. He can pop up into sitting in the blink of an eye. He’s up on his feet pulling things off a table top before you even notice. Perhaps we have an athlete on our hands.

go forth and multiply?

2010-01-19T14:38:00.000-05:00

Lately the question has been on my mind - is our family complete? I feel quite happy with two children. I think the number is easy to handle and it’s what I always imagined my family to be. I don’t want to go through pregnancy or the newborn stage again. Personally, I am complete.

But does that mean that my family is as well?

I know my buddy will learn more from siblings than any other source. Does he need more?

I think about monkey bear years from now with the task of caring for aging parents and keeping an eye on my buddy. Is it fair to have that burden be solely on her?

I want grandchildren. OK, so it’s a little premature for those thoughts, but all my eggs are in one basket (so to speak).

And lets face the facts. As my mother-in-law liked to say before I had kids, “You’re not getting any younger.”

How do people make that kind of a decision? I can barely decide what book to choose for the book club. Is it worth messing with my sanity now just to possibly improve the long term future? And there is no guarantee that any child will grow up to be responsible and helpful.

Perhaps I’ll start believing in a higher being and leave the decision to them.

new dreams

2009-12-20T14:37:00.000-05:00

I had to fill out a form the other day and say what my biggest disappointment in life is. I am happy to report that Down syndrome was nowhere on that paper. My buddy gets more fun every day and I am relaxing a little on spending so much time doing his therapies.

In fact, I have a new dream for him. I know planning your child’s adult life is a waste of time and you will always be disappointed, but I just can’t help myself. I have a dream for monkey bear as well, but don’t tell her father. She will have many children and be a wonderful stay-at-home-mom. If her current obsession with babies continues, my dream may come true!

Now, for my buddy. He will have his own apartment, but it will be an in-law apartment so he will always be close to me. He will love to watch ABC Family movies and every time a good one comes on, we’ll make a delicious snack and watch together. I don’t dream big. I just dream about what will bring me the most joy.

standing

2009-12-13T14:36:00.000-05:00

It’s crazy the joy I get out of watching my buddy stand up. He has mastered pulling himself to stand on various objects. He will even put a toy on the couch, pull himself up, and play while standing. He has to be leaning on something, but he is quite secure. He even will take a few steps to the side if something is worthwhile- ie the remote control or Mommy’s magazine.

It is just the cutest thing you ever saw. He smiles and babbles away just so very proud of what he can do. I know he worked so hard to get there and because he’s exercising himself (giving Mommy a break) I don’t care what he does while standing. He’s been known to pull all the CD’s out of the CD player, hammer the TV, push every button on the cable box, and lean so far over the edge of the tub that he fell in.

But the funniest thing I ever saw while standing was just before tubby time. Monkey bear was already in the tub and my buddy was standing leaning against the outside of the tub “talking” to his sister. I got him undressed (while standing) and then pulled his diaper off. He pushed his body away from the tub, supporting himself with his hands, looked down, and peed right on the side of the tub. For some reason, the sight of that chubby guy doing something a grown man would do just cracked me up.

black and white

2009-11-28T14:31:00.000-05:00

Just when I am appreciating what my buddy can do and all that he has accomplished, the Birth to 3 Annual Evaluation comes in the mail. I was there for the evaluation and it was fun to see which goals he reached. He performed like a trooper and monkey bear managed to play happily. My buddy is making strides every day and it feels like a time of explosive growth.

But then I see it in black and white. There are many areas where his development is “age-appropriate” and I silently cheer and dream of his college graduation and subsequent honors and achievements. Then there are those areas where his skills are “of concern” or “delayed”. The dream changes to - maybe he’ll be able to live independently some day.

Oh, and there is the dreaded chart. He gets a percentile rank - social skills at 42% (the highest of them all) with most below10%. His age range equivalent (at 12 months old) range from 7 - 10 months. I know that the gap now is the closest it will ever be. He will continue to broaden the gap between himself and his peers until it is so large they no longer feel the need to measure it.

Every day it gets easier not to compare and measure my buddy. Every day he does something he couldn’t do the day before. Unfortunately, evaluations will be with him for a few years more. And I will just have to face the reality every once in a while and then put my rose colored glasses on and enjoy the snuggles.

wrestling hour

2009-11-23T14:29:00.000-05:00

My buddy is an easy going guy, but it takes a lot to make him really laugh. I spend hours every day pulling out all the stops and doing things I never would in public. But, alas, no laughter. His usual expression says, “I wonder what that crazy lady is doing…”.

Every night after dinner, I lie on the floor and he comes crawling over with a determined look in his eyes. Let wrestling hour begin. For someone who only commando crawls, he somehow can leap through the air and land on my stomach. My buddy lets out the biggest laugh as we roll around on the ground.

He just loves rough, physical play. When monkey bear tickles him, which is not gentle at all, he laughs and laughs. My buddy’s other love is anything that lights up and plays music. He will find 3 or 4 toys and have them all going at the same time. I guess this means I am in for many years of loudness.

My buddy and monkey bear are so different, yet they compliment each other perfectly.

the system

2009-11-13T14:27:00.000-05:00

A few weeks ago I attended a Down syndrome convention. I met some really great people and received some fantastic information. Perhaps too much information. It seems like every time I learn something new, it makes my job as a mom harder.

My buddy is in the Birth to 3 system that offers early intervention for children with special needs. We do physical therapy, occupational therapy, speech therapy, and have a teacher. I’m sure monkey bear thinks that every baby gets people traipsing in and out of the house doing “exercises” with them. It’s a lot of different therapies and I learned that it may not be enough.

Right now in between appointments, I become the physical therapist etc. I have to work with him every day so that he can progress through his milestones at a faster pace. If he was left to his own devices, my buddy would hit each milestone, just at a much, much slower rate.

I learned that in other states he would be receiving over 20 hours a month of services while we were receiving 5 hours. I had a meeting and bumped the hours up to7. I really want to do what is best for him, but do I really want to fight and buck the system just to have someone in my house interrupting my schedule for 20 hours a month? And is that really what is best?

How am I supposed to advocate for him and fight for what he needs when I don’t really know what his needs are? I am not ready for a lifetime of dealing with the “system” and pretending I know what will prepare him for life better than everyone else. I just wanted a family, not a cause.

did she just say that???

2009-10-25T14:26:00.000-04:00

Once a week we go to a little class for toddlers that my friend teaches. Monkey bear loves the class and my buddy gets a kick when we are all singing. It is a small class so we all know each other.

The other day, one mom was asking me if I did prenatal testing when I was pregnant with my buddy. She then went on to say that when she was pregnant, she chose to have an amnio done to find out if her baby had Down syndrome so she could terminate the pregnancy if he did.

Wait… what?!?!

Did she just say that to my face??? This woman knows my son, has spent time with him for the past few months, and she thinks nothing of saying to my face that she would have aborted him.

The worst part is that I was so stunned that I didn’t even say anything. I don’t think she has any idea that she offended and really hurt me. My first chance to defend William and all I could say was, “I wouldn’t have done anything differently if I had known.”

How could someone see how wonderful my buddy is and still chose not to have him?

if only I knew

2009-10-15T14:25:00.000-04:00

Today my buddy is one. I can’t believe a whole year has passed. My buddy is such a great little kid. He is so easy going and has things that he loves (food) and things that he hates (having his face wiped). He will flash a huge smile at anyone that catches his eye. I couldn’t ask for a better baby.

I wish a year ago I knew what I know today. Down syndrome, while it may have it’s challenging moments, isn’t really a bad thing. My buddy looks and acts like any other kid. Sure his tongue may stick out and maybe he can’t stand up yet, but he crawls, laughs, and plays. He is adorable (perhaps I’m a little biased) and has this magnetism about him.

My buddy will let monkey bear abuse him - in the form of “tickling”, sitting on his lap, and playing peek-a-boo which entails smothering him with a blanket. He just laughs and pushes her away. I’m sure some day there will be sibling rivalry, but for now she is the sun to his earth.

I could have saved myself a boatload of heartache if I could have peered into the future. I spend the most part of every day just kissing and snuggling him and being thankful for him… just the way he is.

the day my buddy was born

2009-10-01T14:13:00.025-04:00

Before my buddy was born, I never wrote outside of English class. A few months after his birth, I felt the need to get it all out and wrote … never intending to share it with anyone. As we enter Down syndrome awareness month and just a mere 2 weeks from my buddy’s first birthday, I thought I’d share just a small snippet.

my buddy = W and monkey bear = C

“He looks like he has Down syndrome.”

“What a terrible thing to say about our new baby. I can’t believe you would say that.”

“No, I really mean it.”

“But I did all the prenatal testing and nothing came up. I don’t think he can have it.”

Michael brings W over for me to see. He does look like he has Down syndrome. I keep on repeating that I did the blood work and that it can’t possibly be true.

“You need to say something to one of the nurses,” said Michael

“I don’t want to be the mom that thinks there is something wrong with her baby - what if it isn’t true. I can’t be that mom.”

Hours pass while no one says anything to me. I try and get W to breastfeed, but it isn’t working. I buzz a nurse to come and help me. She brushes me off saying something about skin to skin and just letting the baby rest for now. No one will look me in the eye. There is a huge elephant in the room.

I call my cousin and tell her I had the baby. She asks if he is beautiful. As I stare at W wondering what his fate will be, thinking of my “perfect” son, I don’t know how to answer the question so I talk about his long blonde hair and the longest fingernails I’ve ever seen. Tears silently fall down my face. In my heart I know.

More time passes while I just stare at W. It feels like an eternity. This guessing game I play with myself. How could the prenatal testing not have found something? Newborn babies all look a bit funny to me. I don’t know a lot about Down syndrome and I am nowhere near the internet or library. I need to say something, but what do I say? Who do I ask? I pretend to be the happy new mom and make a few more phone calls. Relief when I get voicemail. Feigned exhaustion when I reach a person. I call the bare bones list. Not like after C.

Finally the nurse practitioner from my family practice doctor’s office comes in. A slightly familiar face. Our doctor is away, of course. I bring up that we think he looks like he has Down syndrome. In my mind I say “down’s syndrome” because that’s what I think it is called.

“That’s why I am here. There have been some concerns because of some low tone and other physical traits. We are going to have a pediatric specialist come in to do an evaluation.”

I ask my questions about the prenatal testing and she explains that it meant no increased risk was present, but we still had the “normal” risk for Trisomy 21. The specialist won’t be in until later, so we have to wait for the expert opinion.

I reach my mom on her cell phone but the connection isn’t great.

“Mom, they think W has Down syndrome,” I manage to get out between the sobs.

“What?”

A little louder this time, “They think he has Down syndrome.”

“I’m having a hard time hearing you.”

This time I practically shout, “They think W has Down syndrome!”

She pulls over to the side of the road so she is able to talk to me. There is nothing better than the sound of your mom’s voice when you really need her. She talks of how society has come so far and how special education is there for you and how many support groups are out there.

I feel better. We have no definitive DNA testing and no specialists opinion, but we know. Michael is having a hard time keeping it together. C is starting to get hungry and whining. My dinner arrives. I don’t eat red meat and am lactose intolerant. Dinner is meatloaf, mashed potatoes, and salad with creamy dressing. This pushes me over the edge. I am so tired, but more than anything, I am starving. A nurse comes in and I just cry and cry. She orders me a special meal. C enjoys the meatloaf.

I sit alone for a while until the pediatric specialist, Dr. O’Callahan comes in. He has kind eyes and a slight accent that is very pleasing. He pulls a chair right next to the bed.

“How are you doing?” he asks while resting a hand reassuringly on my knee.

I am so taken by surprise with his warmth that I almost start to instantly cry. I usually don’t cry and especially not in front of someone I don’t know. I manage to shrug and say, “OK.”

Dr. O’Callahan then goes on to say that from his exam he believes that W does have Down syndrome. He talks about the physical traits that he has that lead him to the conclusion and about blood work that will be done to say 100%. There is more talk about possible health concerns and he has a pamphlet for me to read. The good news is that there is no sign of a heart murmur or any other health concerns. Dr. O’Callahan then offers some words of encouragement. The words are a blur, but the sentiment settles well in my heart.

My in-laws come by for a visit, but W isn’t in the room with me. They bring a stuffed animal and flowers. There is a lot of awkward silence and no one really knows what to say. I waddle on down to the special care nursery so I can show them the baby. I identify myself and we are buzzed in. We squirt our hands with antibacterial gel - a smell I will soon be all too familiar with. As we enter, I stop not sure what to make of what I see. W is under the french fry warmer, legs and arms sprawled out, with a blue surgical sheet over his belly with the hole part open over his belly button. For a second, a million questions pop into my mind, the number one being - I did not give my permission for anesthesia and what on earth have they done to him.

The nurse must have seen the look on my face and she quickly explained that he is just sleeping. They needed blood and didn’t have any luck finding a vein, so they opened up his belly button to get the blood. We admire W for a moment. My mother-in-law is quick to say how beautiful he is and how they love all their grandchildren. I feel the other unsaid words - she doesn’t want it to be true. She doesn’t know what to do with a special needs grandson. And what will everyone think of him, but more importantly, of her.

The room starts spinning around me and the reality of the day hits me. I always wanted children, but mostly I always wanted boys. I love my daughter and was surprisingly excited to be having a girl. But there is something about having a house filled with rowdy teenage boys. I used to imagine my son with all his friends over. I would cook great snacks and they would always want to hang out at the house filling it with their life force. There would be girlfriends I could chat with and befriend in the way you can’t befriend your own daughter. But now my son has Down syndrome. My “perfect” family of one boy and one girl no longer exists. My heart is aching. I turn the lights off and cry until I have nothing left to give.

stop the maddness

2009-09-25T14:12:00.000-04:00

When I was pregnant, I signed up for this great thing from the What to Expect website. They sent weekly emails saying how big the baby was, what parts were growing and how to deal with all sorts of pregnancy things. Then as your baby is born, they send weekly emails on what kind of milestones you baby should have reached and what will come next. For monkey bear, this was great information. For my buddy, this is a weekly reminder of what he isn’t doing. Finally, after 11 months of this self torture, I unsubscribed.

Clicking that button was easy, but the constant comparisons are not. I can’t help but look at monkey bear’s baby book and think to myself… “if she played peek a boo at 6 months, and he’s doing it at 11 months does that mean intellectually he is 6 months”.

I have a handle on the physical side of things because I can imagine how things will progress and how it will just be slower. But what I can’t seem to figure out is the intellectual side of things. When he is 3, will he only be able to grasp concepts that a 2 year old would? And how does one set up reasonable expectations for his behavior. I assume once we are there, it will make sense to me.

Tomorrow I will be attending my first big Down syndrome event - The Buddy Walk. I hope to leave there with bright hopes for my buddy’s future and to stop the comparison maddness. I want to look at my friend’s daughter, who is a week older than my buddy, and appreciate her for her and not compare what she can do to what he can do. I hope that seeing so many amazing kids with Ds who are able to do all sorts of things will light flames under my glass so I can see that it is half full.

snuggles

2009-09-19T14:11:00.000-04:00

Even on the most grumpiest of days (me, not them) my buddy is always there. Monkey bear seems to feed of my bad moods and gives it right back to me. But my buddy… he’s a one of a kind. He is still super chubby and just loves to snuggle. Lately when I pick him up, he tucks both arms under his body and puts his little head on my shoulder nuzzling in.

Another positive of Down syndrome is the extended baby stage. My buddy has been in that super cute baby age for a while and I’m guessing he’ll stay there a little longer. The other day, he was sitting in the curtains playing peekaboo with me. I didn’t think developmentally he would be able to do that, but there he was peeking out over and over again.

My buddy has the best belly laughs. Monkey bear just has to look at him and smile and he laughs and laughs at her. She is the sun about which he revolves. One can hope as teenagers they will get along about half as good as they do now.

I keep bumping into these stories about the decline of Down syndrome because so many people are choosing to abort when the prenatal diagnosis comes in. I can’t ever get past the first paragraph. I wish they could see my buddy and see how he is just a baby looking for love and attention. Just a little being wanting to be snuggled.

small taste

2009-09-14T14:09:00.001-04:00

I got a small taste of the positive side of Down syndrome recently. Every milestone for my buddy so far has been reached in very small increments. One day he can lift his head 20 degrees, the next week it’s 30. If you see him every day, it’s hard to see how far he has come.

Until now.

My buddy one day was simply commando crawling about and rolling around. And the next day he could sit up all on his own. We had been working on this for at least 5 weeks. I had sort of put it on the back burner while we focused on kneeling to strengthen arms and stomach muscles. And then like magic, he was sitting up.

He’s been doing it for days, and still I think it’s the cutest thing I ever saw. I spend so much time watching my buddy push himself right up. I am just so proud and want to tell everyone I know. Of course, they don’t really get it. I wouldn’t have either. Who knows when monkey bear sat up on her own. It wasn’t something that got written down in the baby book or photographed.

If just sitting up feels so great, imagine when he can stand on his own or even *gasp* walk. What so many other parents of children with Ds have said is finally making sense. My buddy worked so hard to learn this new trick, and will have to work so hard in everything he does, that the rewards are way sweeter.

2 going on 32

2009-09-12T14:08:00.000-04:00

Monkey bear, at the ripe old age of 2, is becoming an adult. She has decided to call me “Mom” with a special emphasis on the last ‘m’ as if she’s letting me know that she no longer needs me. She is clearly all grown up. Monkey bear talks in full sentences using such words as “probably” and “actually” usually with a hand on her hip and the other one flying about in the air. She insists upon eating everything with a fork and spoon - even grapes - and requires a napkin to dab at her mouth.

Just the other day, monkey bear informed me that there is a little baby in her big belly. Her babies go with her everywhere and she takes care of them nonstop. Feeding, bathing, changing diapers, and doing exercises… just like Mom does with my buddy. She holds them ever so gently in her arms while shushing them and rocking side to side. I can picture her 3 feet taller doing the exact same thing many years from now.

I have taken care of many toddlers and none of them have been quite like monkey bear. Perhaps she knows how many gray hairs she gave me as an infant and is making up for it now. I can leave monkey bear alone in a room with a box full of crayons and some paper and she will only draw on the paper. When she wakes up, she calls my name and patiently waits in her bed for me to come and get her. Give that girl a rule and she will follow it.

Some days I wonder if I had something to do with how she is turning out… then I get a look at my buddy. Already he has pulled lamps over, gotten into every shelf he can reach- books, puzzles, desk items- eaten shoes, eaten paper, and tormented the cats in general. I see many years of trouble ahead of me, but at least monkey bear will be there letting me know a rule is being broken.

the little things

2009-09-08T13:59:00.000-04:00

When you first have a baby with Down syndrome, you read any information you can get your hands on. In those first weeks there was so much information - heart defects, hearing loss, vision problems, developmental delays…. It goes on and on. If you are lucky, you find a person or two who has been there and can be a huge supporter.

As time goes on and you meet more and more people, you learn the little things that they don’t put in books. Kids with Ds often like to wander off and parents find they need to lock the kids in the house with them. They aren’t potty trained, on average, until age 5. Sippy cups promote tongue thrust, so you have to use a straw cup.

Next, I learned about the physical characteristics that I ended up loving. My buddy has the most beautiful brushfield spots in his eyes and this adorable space between his big toe and the one next to it. So far his flat nose is the cutest button nose ever.

As my buddy grows, I wonder what other things will take me by surprise. I also wonder what milestones will hit below the belt. Will he be able to feed himself cake on his first birthday? Will I ever get a photo of him without his tongue sticking out? When will he be able to say “Mama”?

And then there are all those fears about the future. I don’t want kids to make fun of him. I don’t want life to be harder on monkey bear having to defend her brother. What will he be able to accomplish in his adult life? Will there ever be a day when I don’t think about Ds?

For now, I take each little victory and accomplishment and savor them. And those hugs… forget about it. Plus, who cares if that huge smile only has one tooth!

sitting

2009-09-07T13:58:00.000-04:00

YAY!!!

My buddy has been stuffy lately, so in order to help while he sleeps, I propped one end of his mattress up. So now there is a gentle incline in his crib. I put my buddy down for his nap and listened to him make noises for a while. Then I peeked into the video monitor and…

He was sitting up!!!!! I have been working with him for 5 weeks on sitting up from laying down. (along with getting down gracefully)

I spent 10 minutes glued to the video monitor watching him get up and down grinning from ear to ear. He just needed a little boost against gravity. I bet a few days of practice in his bed and he’ll be able to do it on the flat floor.

It’s funny how the little things matter so much more with him. I don’t even recall when or how Monkey bear learned to sit up. All I know is I didn’t teach her. Other kids my buddy’s age are pulling themselves up to stand or even walking, but today that doesn’t matter. He pulled out a new trick all on his own and I couldn’t be more proud.

two

2009-09-06T13:57:00.000-04:00

When we decided to have a second child, I had no idea how our family would change. When I had a newborn and a 15 month old, life was a blur. All I knew was that two was WAY harder than one and I couldn’t see past all the diapers and daily needs.

Now that they are 2 and 10 months, I can begin to sit back and enjoy. Monkey bear likes to crawl around saying, “I get into trouble!” pretending to be my buddy. Her other favorite activity is for me to do my buddy’s exercises with her.

Monkey bear always demands that my buddy be put down on the ground for her to enjoy. No one can make my buddy laugh harder than monkey bear. And he stares at her with such admiration.
I am endlessly amused by the two of them. They have this amazing love for each other. I knew that my heart would grow enough for two children, but I didn’t even consider how much their hearts would grow.

does that reallly exist?

2009-09-05T13:51:00.000-04:00

Today we had an appointment with the ENT for my buddy. We are so lucky that he hasn’t had any major health issues, yet still I find myself always at another doctor’s appointment. My buddy had some major fluid in is ears that was effecting his hearing. The fluid has subsided a lot and his hearing is almost back to normal. That leaves us with multiple visits to the ENT and audiologist.

Some days I find myself feeling bitter about Down syndrome. I love my buddy with every bit of my heart. I try and tell myself that Ds is a huge part of who he is and he wouldn’t be the same without that extra chromosome. But deep down, I don’t really believe myself and wish he didn’t have it.

I’ve been searching for books that explain what life is like for a mom with a child with Ds, but nothing has satisfied me. Perhaps 10 months isn’t long enough to get over the loss of who I thought he would be. I want to be that mom who inspires others and is happy that her child has Ds…. but does that really exist??