Thursday, December 11, 2008

December 22, 2005

It was almost 3 years ago. It is the kind of day that I still can remember every detail, from the clothes I was wearing (a black banana republic shirt with my Citizens jeans), to the words that were said (there is a problem, your baby may have Down syndrome), to having to pull ourselves together for the flight to Atlanta that afternoon to announce the other big news to our family and friends (that we were expecting).

If you've never been in this position, you can't even imagine the emotions. Aside from being told that we should get an amnio (we didn't) and think about our options (which were inconceivable to us), we got no further information. At 3 months pregnancy, we knew there was a 1 in ten chance, that days later reduced to 1 in less than 5 (and was originally 1 in 1200 before the test), but we knew nothing else. Jon remembered his short lecture in med school of possible higher risks for kids with DS: possibilities of heart defects, alzheimers, etc. I remembered watching the show "Life Goes On" as a child and thought that kids with DS were isolated in special education classes and never leave home as adults. Our only additional knowledge was that pregnant women are very routinely tested to see if their child has DS, and the majority (92%, we later found out) end up aborting if the results are positive.

This fact alone, made it a traumatizing day. We were the chosen couple, that surprised the doctors because of our young age (we later found out that 80% of kids with DS are born to women under the age of 35, although the risk of having a child with DS over 35 is higher), and no one knew what to make of the situation. We knew no one wanted the results we got, and were completely shocked ourselves. And yet, it somehow made sense. We had prayed since we got married that God would let us know when it would be the right time to start a family ("Dear God, please let us have the right child at the right time"), and knew we would be great parents to any child that was given to us. But it was still a complete shock, for the sole reason that we were told something was "wrong" with our child and everyone was so sad, including us.

It is the most traumatizing day of my life, but for a different reason. I get so sad, thinking of myself on that day, crying and wondering and confused and unsure. I get so sad, because on that day, we didn't even know what we were sad for. I wish I had known what our future would hold for us. We have the best little girl in the world, who is not only beautiful, but smart and funny and probably one of the most influential toddlers on the planet, except for Suri and Shiloh. She continues to amaze me with her abilities and humor and passion for life. I've learned so much from her, and because of her, and with her. She is like seeing rainbows in every situation.

So I get sad thinking about that day. That newly pregnant parents, with no information, feel devastated without even knowing what they're facing. Before they know it's a girl or a boy or a princess or a jock, before they look into their precious baby's beautiful eyes and see their mischievous smile, they know something they interpret as being "bad." And the doctors and professionals... well I know they do their best but I doubt most have had much interaction with a child with Down syndrome.

If I could rewrite history, I wouldn't have that doctor give us the news in such a depressing manner. I wouldn't be referred to a high risk ob and a geneticist. I wouldn't have that couple worry about their baby growing inside them, feeling helpless and confused.

Instead, I would take them on a tour of a two-year-old preschool class, with 10 beautiful kids and 2 teachers singing songs and dancing. They would do funny little movements that went along with the words of the music, touching their toes, stand up, sit down, shake, having the best time. Then the kids would listen to storytime, and the teachers would tell the kids to go into the bathroom and wash their hands for lunch. The kids would all do so independently, then run back into the classroom and sit at the table. Two little girls, both with long brown hair, inseparable, laughing, would look for the placemats with their pictures on them, and happily sit next to each other. One of these little best friends would have an extra chromosome, but no one in this class notices or cares. All ten toddlers would sing and do the signs for their "grace" song, before digging in to a well-balanced meal. Afterwards, the children would rest for naptime, with the most adorable kid in the class snuggling up to her Raggedy Andy doll as she falls asleep. I would tell the parents, one of these children will be yours, and the parents would not even think to be sad; all the children look so beautiful and happy and secure and well-loved.

December 22, 2005. It was a sad day, but it got better. We had faith in God that His plan for us would be amazing, no matter what. Six months later, I gave birth to our daughter, and she was so beautiful we couldn't even believe it. And her presence in our home each day since has been a wonderful adventure. But I can't help thinking, the sadness of that day didn't have to happen.

Our life is not a sad one, not one to be feared. It is so full that sometimes I think my heart will burst with love for my daughter. I laugh so much at her antics, I can't even remember how quiet life was without her. I get the most wonderful hugs and kisses from her, and of course she remembers to pat me on the back when she "cuddles" me. I wish, 3 years ago, that we had known what we know now: and if we had, instead of crying, we would have been overjoyed. She was made for us, and us for her, and for that I am forever grateful.

You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out before a single day had passed.
Psalm 139:16


Lil'Sis said...

Beautiful, you, Lilly and your post, thank you as always for sharing so much.

Lots of love,

Beverly Kerr said...

Well said friend. At this point I have tears in my eyes because I know what you are writing about. Our world may be different than we thought but different is BETTER! We wouldn't trade our little guy in for a millon others. Thank you for staying strong and knowing that God had chosen Lilly for you and the world.

Cassi said...

Beautiful post. Thank you for sharing this with us. Lilly is definitely a little treasure that could never be replaced!!! You are an amazing mother and witness to all of the beauty of children regardless of any obstacles.

Anonymous said...

If I were ever in your position, or had a friend who was, you are the first person I would go to. You have the most amazing way of explaining things, and it helps me so much to try to see things from your eyes when working with kids and their families.

I will never forget how you first "introduced" me to Lilly, by sending me her pictures and telling me "Her name is Lilly and she has Down Syndrome." Then we went on to talk about how perfect and fabulous she clearly already was at a few weeks old. All I could think was "Wow. My friend is an incredible mom." I can only hope to measure up!

awalton said...

you should write a book... seriously.