Annie is now 6 months, and my family and friends have been bugging me long enough about doing this. They can’t believe all the wonderful places and people Annie gets to experience. So we will be keeping track of all her adventures in this blog – along with some of her parents’ adventures. And she is our greatest adventure yet.
If I were to be 100% honest, I would tell you that when we were first given the news of her diagnosis I was scared to death, even devastated. I wanted it to “go away.” I didn’t want the extra challenge for her or for me, especially in a foreign country so far away from my support system. I also was worried about her health and, like all mothers, didn’t want my baby girl to suffer in any way. I quickly realized how foolish I was to think this way. It saddens me that I was not able to celebrate my beautiful baby immediately at the time of her birth, that I mourned her diagnosis at all. I know, it is a human reaction and my family and friends have tried to help me lessen the guilt I carry in my heart for this initial reaction. Everyone dreams of their “perfect” baby: A beautiful balance of two people – some mom, some dad. Well, Annie’s chromosome map may not be evenly balanced due to the appearance of an extra chromosome on the 21st pair, but she is the most beautifully balanced human being I have ever laid eyes on. Her perfectly almond shaped, sparkling blue eyes. Her rosy, chubby cheeks. Her porcelain, almost transparent skin. Her rosebud lips and tiny nose. Her sweet fingers and toes. The little faux-hawk her hair makes after every washing. Her contagious smile and adorable gurgles. The way she lights up every room she enters. She is our little magnet. Everyone wants part of the Annie magic.
It’s a funny thing, that we mom’s worry so much about milestones and whether our kids are “on track.” How often do you hear moms bragging about how quickly their children walk or talk? It’s no wonder kids want to grow up so quickly, we are constantly pushing them to from the day they are born. Don’t get me wrong, I am all for proper development and stimulating growth and learning. Obviously. It’s just the obsession with it. For instance, I recently joined an internet group in order to get involved in a support group for parents of children with down syndrome. In order to join the support group, I had to first register to the larger site for all parents. I now receive a weekly email about what my “typically developing” infant should be doing this exact week. “Your baby is beginning to hold his head up on his own.” “Your baby is beginning to grasp objects.” “This week your baby is reciting Shakespeare!”
Well, my baby isn’t.
And you know what, I am celebrating this.
I get to throw away this manual with typical timeline. Who wants to be “typical” or “normal” anyway? Annie is going to do and accomplish all these things of course, I just don’t know when. And you know what, this makes it a whole lot more fun. Most moms probably don’t even think about nursing as a triumph. It is nature, it probably happened at the hospital. Well, when Annie nursed for the first time I felt like throwing a party. She was 4 1/2 weeks old. The way things were going, I thought she never would. And then she surprised me. My freezer was overflowing with breast milk, my days were spent attached to a machine that made me feel more like a cow than a mother. But the way I felt on the day she latched and could swallow for the first time made the whole journey worth it. That’s one example of how Annie’s extra chromosome makes our lives extra special.
We have been given the gift of constant surprise in our lives.
Annie gives meaning to the toast my husband made at our rehearsal dinner – “Never grow old willingly.Celebrate everything you can. Never celebrate alone.”
Society had me convinced that having a child with down syndrome is a sad burden to carry. That my daughter will have more never’s than ever’s in her life. She will never talk the right way, or look the right way. She will never get married or go to college. And maybe she won’t, but my bet is that, like she does every single day, Annie will surprise us all. Stay tuned…