Motherhood…Unprepared

So I’m participating in this “31 for 21″ blog challenge. Attempting to blog every day for the whole month, focusing primarily (for me) on Down Syndrome. I can’t promise that every day will be DS-themed, but if you read my post yesterday , you know I’m on a mission not only to raise awareness about something that’s near & dear to my heart, but also to introduce you to my Henry. Because once you are familiar with someone who has that little extra something in his or her chromosomal makeup, not only will you never be the same, you’ll realize that words like “retard” and making jokes about “the short bus” are based on ignorance of the unknown, fear of the “different” and simply not knowing of whom you speak. So. ‘Nuff said. Here’s what I want to talk about today.

This is a layout I did about my Henry and our reaction when he was born. He was so little. Very, very little. He still is, actually, compared to other little boys his age. But, unlike many other parents who have a child with Down Syndrome, we had no idea. We had no prenatal testing to screen for it, and because he was born at home, we didn’t even know when he was born. Oh, yeah. This amazing child was born at HOME, with no crazy medical intervention, medical “professionals” creating fear and panic for me & my husband, no whispers and prying eyes as people felt sorry for us for having a “defective” child. He was born, we held him, we weighed him, I nursed him. Any problems didn’t even surface for the first couple of days, so we didn’t miss the time of joy and excitement that comes with a new baby because people around us were saying “I’m sorry” or qualifying their comments because he was “less than”. (Don’t misunderstand. Most women have their babies, DS or not, in the hospital & that’s cool. Especially because many children with DS have severe medical issues that must be addressed quite soon after birth. I would never say that all babies with DS should be born at home. I’m just glad Henry was.)

In fact, he was 2 weeks old before we knew. We were so blessed. We had 2 weeks of “babymooning” before we everything changed. At first? He was just small. He was losing weight and, it turned out, unable to nurse, plus he had slight jaundice, so that’s what everyone was focused on. We had a little baby scale at home and I’d weight him, pump my breastmilk, feed most of it to him via syringe (he couldn’t make the bottle work, really) and then weigh him again. Keeping track of how he gained and how much he ate. We went into the pediatrician’s every 2 days or so. After about 2 weeks, his jaundice had cleared up enough that the doctor was able to really examine him. Here’s what I wrote about that experience in the above layout:

I remember standing alone in that doctor’s office as the doctor was finally able to examine him after the jaundice had cleared up. I watched him turn, lift, pull, move, poke, prod Henry all over & then just out of the blue said, “Has it crossed you mind that Henry has Down Syndrome?” Before it even registered, I said, “That’s funny you should say that because I thought that in passing when I was looking at him one day, but that’s all it was…just passing.”
That’s all I remember. A dull roar started filling my ears & all of my insides started roiling. It slowly, very slowly, started creeping into my consciousness and everything around me started crumbling. I don’t remember anything else that was said, just the voice inside trying to keep the tears at bay because I didn’t want the doctor to think I was a bad mother for being sad about it.
Then I had to go out & tell my mom who was with Steven in the waiting room. The noise she made will never leave me. It was raw & guttural - animal-like. A wounded moan. The weight of this was more than I could comprehend. It would be weeks before I understood. Weeks of testing, reading, researching, doctor’s appointments and crushed dreams. Accepting that the dreams you’ve had for your child will never come true is gut-wrenching. Henry will never be president. Henry won’t be a doctor. Henry may not go to college. Henry may never live on his own. Henry won’t have children. Henry won’t do a lot of things. That’s hard to accept. The fact that he’ll most likely need us to care for him for the rest of his life - that’s hard. But I’m thankful. Thankful that he’s with us. As hard as it’s going to be, I wouldn’t give him back. But it’s going to be a rough road. Your existence has redefined true north for us. I guess it’s our journey to find it again. With you as our compass.

I won’t lie. I won’t minimize. Finding out what was up with Henry was one of the most difficult, defining moments of my life. I was scared. I was panicked. Do you know why? Because I was ignorant. I didn’t know anything. I didn’t know what to expect - all I knew was what my limited, stereotyped experience had shown me. It was rough - especially at first. But, you have to understand that all of that now pales in comparison to who Henry is. You’re going to learn a lot about him over the next month. Because he’s amazing. Much more so than I EVER could have imagined as he grew inside me in 2003.