So not that long ago, I was having one of those “poor me” moments. Well, that’s not quite right. It was more like a “poor Eli” moment. I wasn’t able to go to Eli’s evaluation at the Thomas Center (Jane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center, that is) in October or September (it all runs together now), so I had only my husband’s interpretation to go by. He doesn’t speak therapy (as in physical, occupational, and speech) language, so I was quite frustrated at my lack of understanding about the appointment and that I was left to reinterpret his interpretations of their interpretations. Geesh. My interpretations of his interpretations of their interpretations had me worried for my son. And confused. Because how could it be possible that when I look at him, I see only perfection and PURE JOY, but when these people look at him they see percentile ranks and deficits and challenges? And then I got the written report in the mail. Finally, I could see their interpretations in a language I speak. Finally, I would not have to decipher husband-language to figure out how my son was developing. It would have been less painful for someone to hold me back while someone else, with very large biceps and a powerful fist, punched me in the gut over and over again. It was about what my interpretations of his interpretations of their interpretations said it would be. Sometimes I hate being right. I shed a few tears, texted and emailed a few of my fellow Ds moms, and posted on a couple of message boards. I don’t disagree with the report, I explained. (Shit, I was hoping to disagree with the report.) It’s just so different being on the receiving end of one of these. (You know, since usually I’m sharing my reports with parents.) I picked myself up with the support of those Ds moms I’ve come to rely on, and decided to carry on for Eli’s sake. Because when I look at him, he is still that perfection and pure joy that he’s always been to me, no matter the percentile rank of his expressive language skills. And I thought to myself that he started nursing finally at 4 months old. Four. Months. Old. If he could learn to breastfeed at 4 months old, he can do anything. He might be 4 months behind, but eventually we get to a point in life when 4 months is no big deal. And so we carried on.
And then, as my son is apt to do, he blew me out of the water. Out of the water. He decided to remind me, in his way, just how capable he is. Do you know what he did? Can you guess? He started signing spontaneously. He’d been able to mimic a few signs, but he had never signed without being prompted. But then, one day, he started signing on his own and in context. He signed more and milk and mama. He signed eat and all done (or all finished, if you prefer). He signed like he’s always been signing. Like he’s signed since birth. I jumped and screamed and scared the crap out of him with my cheering. And then I slowed down. What if he doesn’t know what these signs mean? I remained cautiously optimistic. And then he started signing at school. His teachers started asking me what different signs meant. One day, when I picked him up, his teacher had to wake him up from his nap. He started signing for milk right away. She didn’t think he could possibly want milk–he’d just had some before his nap. But he kept signing it, so she gave him a sippy cup. And he sucked it down. Sucked. It. Down. He signs milk when he’s eating and wants a drink, when he’s having a sippy cup, and when I’m nursing him. This kid knows what he’s signing. Another day, I walked out of the living room, leaving him to play for a few minutes by himself. My husband walked into the room before I returned, and he found Eli signing mama. He continued to sign for me until I came back into the room. His teachers have also reported that he signs for me sometimes during the school day. Bless my sweet boy’s heart, he loves his mommy. He signs eat all. day. long. according to one teacher. 🙂 He takes after me too. If there is one thing I know now, it’s that my little man has the cognitive capacity to “get it.” And he will get it in his own time. And when he does, he’ll make me feel silly for ever worrying.
Last week, Eli had his first regularly-scheduled physical therapy appointment. Once again, he surpassed expectations. Mine and the therapist’s. He did some things she didn’t think he would be able to do yet, especially after that evaluation just a few weeks earlier. I suppose he showed us that a lot can happen in a few weeks. He is such a fighter. And (did I mention?) pure joy.
I want the world to know that managing all of this–the evaluations, the therapies, the challenges and delays–is, well, manageable. I want families just getting a diagnosis to know that they can do it. That it’s really not a big deal, even if it sounds like it is. I want families getting a prenatal diagnosis to know that they can do this, that their child’s life will be so worth it. That having a child with Down syndrome is so worth it. There are challenges–that is an undeniable fact of parenting a child with a disability. But that is also an indisputable fact of parenting a child without a disability. I think about how my daughter developed so normally. Ahead of the curve, even. I think about taking her crawling and talking and nursing for granted. How they just happened, without much thought or regard for the complicated mental processes needed to perform such tasks. And then I think about my son. How purposeful we’ve had to be about each milestone. How focused. How determined. He has to work so much harder to reach the same milestones, to do the things that babies without Down syndrome do so easily. But when he does it, the feeling of victory is so sweet. I appreciate it in a much deeper and more profound way. It means more to me now because I actually have to think about it. And it makes me think back on my daughter’s milestones and appreciate those more too.
Sometimes I get overwhelmed with this life. Sometimes I worry. But I got overwhelmed and I worried before Eli was born. I wouldn’t change it. We’re almost one year in now and I would not change it. I love my son. Just the way he is. Because of who he is. Not in spite of it. For video clips from Eli’s physical therapy at home, find us on Facebook. (I was going to upload them here, but WordPress wants $60.)