new dreams

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

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

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

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

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???

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

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

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

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

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

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

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

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

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

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?

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??