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.