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.