I met up with my mom yesterday while my girls were at Mother's Day Out. Johnny was snoozing away in the stroller as we walked through the mall. At one point, my mom looked down at Johnny and asked, "When you look at him now, what do you see?" I knew what she meant. She wanted to know if I saw him or if I saw the diagnosis.
When we learned about his diagnosis, I thought that I would never get used to "it". That I would never get used to the term, to the physical characteristics, to the whole package of this extra chromosome. Everything I read assured me that I would. Everyone I talked to assured me that I would come out on the other side ok with it all. I didn't believe them. I knew, academically, that I would love my child, but I honestly thought that with each physical feature that manifested, that I would look at my baby and feel my heart breaking. I thought that each time I glanced his way I would have a vision of his karyotype, a map of his chromosomes, looming over him. I thought that I would always be uneasy with his looks and that I would have to force myself as a mother to really see him. After all, I often had to make a conscious effort to look at other people I interacted with that have Down syndrome or some other physical "abnormality" and would give obligatory smiles then cast my gaze away because I felt uncomfortable. And some of that discomfort could be chalked up as honorable because I didn't want them to think I was staring in a rude way, but some of it was also a very real, human emotion of not knowing how to handle "different".
I think God very much protected my heart with Johnny in this way. For the first few weeks of his life, you really had to look for his diagnosis. His physical features weren't obvious right away. I loved taking him to places where people didn't know about his diagnosis to see if they would say anything. Other than comments about his muscle tone, nobody ever said anything. So God allowed the part of me that has a teeny, tiny shred of vanity to fall in love with the way my son looks first. So now instead of being blinded with his physical characteristics, I have to be conscious in my search for them. And sometimes I take a picture and think to myself "Oh, he really does have Down syndrome." But it is a lot like telling people about his diagnosis in general, I still sort of stumble over the words, but it gets less shocking each time. And there will probably still be times it hurts more than others, but it is easier more and more.
In an amazing way, some of his physical characteristics have really seared their way into being such a crucial part of who he is. I visited with a friend last week who has two darling children who are part Chinese. After a short time, I told her, half embarrassed, but wanting to be honest, that as I was watching our kids play, it struck me "Hey, her kids have almond shaped eyes like Johnny". It made me happy to see part of him, a part that I fall deep into when he looks at me, reflected in someone else. I see Johnny spread his toes and notice the extra gap between his big toe and second toe and I want to tickle it (even with my feet issues). I hold "typical" baby boys, like our nephew Titus, and feel their strength and silently thank God for the extra snuggles and easy holding Johnny's low muscle tone means for me.
So I see it. I see the Down syndrome. I also see so much of my boy though. I see finger nails that need to be trimmed and spit up that needs to be wiped away. I see a cowlick that is developing above his baby bald spot. I see feet that are fattening up and rolls developing in all the best baby places. I see perfect little kissable spots in the thick of his neck. I see eyes that try to fool us between hazel and brown, smiles meant just for people he loves, and hands that reach out to touch our faces. It has all just become a part of Johnny, who he is, how he looks.
When my mom asked me what I saw, I smiled, heart soaring and said, "Right now, I see the diagnosis". I then stroked his sweet, sleeping head and that was that. It feels really good to be on this side.