Tuesday, October 1, 2013

My daughter has Down syndrome.

Six years ago, before I even know there was a such thing as Down Syndrome Awareness Month, I couldn't say that.

It hurt.

The sentence would form in my head and before it could reach my mouth and even attempt to be expressed, it would get intercepted by my emotions, which would then form the perfect throat-sized lump while simultaneously creating a knot in my stomach that would rival even the most accomplished sailor's Bowline.

It hurt.

All I could think about was what they told me.

They came into my room when she was twelve hours old, before I could even see the symptoms on my own, before I had the opportunity to get to know her, before I had the chance to build up my defenses.

They looked at her and told me what they suspected. They wanted to take her blood. They needed proof of what they already knew and what it would take me quite some time to accept.

I consented, if only to show them how wrong they truly were. They may have been smart, but I had it on good authority that I had done everything right. I knew that my times of struggle were over. I knew that it was my turn to be happy. I knew this couldn't be my destiny.

They gave me black-and-white printouts from the internet. I could buy books from Amazon. I could try and breastfeed if I wanted to, but here were all the ways it would be difficult. I should look at these pages from a medical journal and try to decipher which condition I should fear the most. It was filled with percentages and descriptors, chances and odds.

She was no longer my baby. She was a worst-case scenario.

I learned to watch and wait for what I perceived to be the inevitable.

I counted how many times her chest rose and fell...wondering, "Is this heart failure? No, wait. Maybe this is."

I woke up in the morning, every morning, half-expecting her to have not made it through the night.

I read things that made me feel foolish for not having known sooner.

It was my fault because I declined the testing.

People asked me,

"But didn't you know?"

"How couldn't you know?"

"Can't they check for that?"

I didn't know to appreciate that my child was healthy.

I was too busy going to the Geneticist, Cardiologist, Otolaryngologist, Endocrinologist, Developmental Pediatrician, Audiologist, EFMP Coordinator, Pediatrician, and Lactation Consultant. I'm sure there were more.

I was speaking with the Parent-to-Parent Coordinator from our local Down syndrome family support group. I was reading things in online forums that would have done better to remain hidden.

At least the Early Intervention Case Worker, Physical Therapist, Occupational Therapist, Speech and Language Pathologist, and nurse for the weekly weight-checks came to me.

And people wondered why I wasn't myself.

It hurt.

I didn't know to appreciate that my child was healthy.

It didn't mesh with what was going on in my daily life.

This is why I believe that Down syndrome awareness matters.

Somewhere, there is a mom who is like I was and she feels lost and misunderstood.

Somewhere, there is a father who wonders if he's going to be able to love his baby.

Somewhere, there are grandparents who don't know what to do or say because all they know are things that are no longer relevant for a child born today with Down syndrome.

I want these people to be able to enjoy and celebrate this child.

I want their friends to congratulate them and be supportive.

I want them to know what's possible in ways that don't involve percentages and descriptors, chances and odds.

Life can be good.

Today, it is good.

My daughter has Down syndrome.


10 comments:

grasshopper said...

You and your beautiful family shine so brightly! People really are better for having known you all. Thanks for sharing.

Maya said...

Beautiful!! If only I could have read this on July 29, 2004!!!

I'm so glad I know you! xoxo

Becca said...

What they said. :-) Beautiful. And you're right - too little information is given to new parents, left to flounder and panic on their own. They need to be told, too, that it's okay to grieve, it's okay for that acceptance to take time, and that they *will* see the light that shines in our children. :-)

BumbersBumblings said...

TEARS!!! I remember talking with you at the 10 year reunion and knowing something was up, but seeing you struggle with finding the words and not wanting to push. I wish I could've hugged your neck and rejoiced in her beauty and differences. Love seeing how far you've come and how amazing your family is!

Michelle said...

The blog world needs you and your voice. So glad you're still blogging. I remember the first few weeks, or months, trying to tell someone new that Kayla has Ds and my eyes would tear up. I wanted to kick myself and silently yell "Damn it! Why do I have to cry when I say this?" So glad I can casually say, "Kayla has Ds" and it's ok. No tears.

krlr said...

Love you.

Therese Blanton said...

Thank you for telling my story. Mine began on June 29 2000 and his name is Luke and we too celebrate everyday

Therese Blanton said...

Thank you for telling my story. Mine began on June 29 2000 and his name is Luke and we too celebrate everyday

HLove said...

We were told when he was still at the birthing center an hour or two after he was born. They said that he has this and this characteristic and then that was all they said. A day later he was rushed to the NICU for dehydration and then a day later it was emergency surgery for a perforated bowel. All the while, every doctor I saw asked me if I knew, didn't I get tested, why did nothing show up on my prenatal scans. He will now be 4 months old on October 17th. I love him with all my heart, so grateful you told my story!

Sean Adelman said...

Beautiful.