December 23, 2010


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. 

December 17, 2010


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.

December 12, 2010

the r-word

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.

November 29, 2010


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.

November 14, 2010


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. 

November 10, 2010

baby steps

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.

November 6, 2010


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.

October 28, 2010


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.

October 25, 2010


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.

October 18, 2010


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.

October 7, 2010


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.

September 14, 2010

next generation

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.

September 10, 2010

letting go

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.

September 1, 2010


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. 

August 19, 2010

new moves

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."

August 10, 2010

I would never...

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.

July 26, 2010


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.

July 14, 2010


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.

July 6, 2010


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.

June 22, 2010


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.

June 9, 2010


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.

June 2, 2010


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.

May 26, 2010


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. 

May 22, 2010

kids like mine

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.

May 17, 2010

messy boy

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.

May 12, 2010

busy, busy

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.

May 7, 2010


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.

April 23, 2010

only 2

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.

April 20, 2010

smile from the heart

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. 

April 14, 2010

first dinner

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.

April 12, 2010


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.

April 6, 2010


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.

March 27, 2010


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.

March 20, 2010

1 : 1700

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.

March 13, 2010


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.

March 10, 2010


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.

February 15, 2010


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.

January 30, 2010

first steps

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.

January 19, 2010

go forth and multiply?

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.