Kruz is scheduled for surgery next Wednesday. It's actually two surgeries, by two different surgeons, but they are both willing to go into the operating room at the same time to eliminate Kruz's need for two rounds of anesthesia. Both procedures are routine but Kruz and his bleeding disorder like to add a special twist to even the simplest procedures. In preparation, I loaded him into the car this morning in bitterly cold, sub zero temperatures and headed to the hospital for blood tests so his hematologist can determine how best to keep his bleeding from getting out of control.
The woman who drew his blood was older and very comfortable asking questions that, quite frankly, were none of her business. But she was kind and I understand the need for small talk so I didn't take offense.
"Are you fostering or are you going to adopt him?" she asked.
Given that Kruz and I have the same last name, she was clearly basing her assumption on the contrast between our skin colors.
"We've already adopted him. He came to us when he was five months old," I answered.
She proceeded to volley questions at me as she drew his blood ......"Where's he from?" "Does he see his birth mother?" "Do you have other children?" I answered briefly but respectfully.
As we were getting ready to leave, she handed him a little stuffed dog and said, "Good for you for adopting a child with special needs."
I never really know how to resond to a statement like that so I thanked her and left. As I walked through the long hospital corridors, her last sentence nagged at me. I replayed the entire brief interaction over in my mind. I never mentioned to her that he was special needs. I never put him on the floor so she didn't know that he can't walk. He didn't talk to her, but after 20 plus years of drawing blood, I am fully aware that most two years don't talk to the person about to put a needle in their arm. Nothing that he did would have indicated he has special needs. He just sat there quietly on my lap. She must have known he was special needs just by looking at him. Something about this knowledge twisted in my gut.
When I look at Kruz I don't see special needs. I see my son.
I know that his eyes drift out. I know that the tops of his ears grow into his head and the bridge of his nose is flat. I know that his head is a bit misshapen and his fingers are slightly deformed. I know all these things but when I look at him I don't see all that. I see a beautiful, happy little boy who melts my heart with his smile.
It's never really occurred to me that others see special needs just by looking at him. It doesn't matter to me in the least what others see. But what does matter to me is how he will one day see himself.
Moise's facial features are such that, were it not for his physical disablities and his actions, the average person would not know he is different. Laynee had the typical Down Syndrome features..... almond eyes, thicker tongue, floppy ears, flat shaped head. Most people knew instantly that she was sporting an extra chromosome. Sometimes, upon meeting her, people would uncomfortably ask "Is she...?" "Does she.......?" and I would help them out by saying "... have Down Sydrome? Yes. She does." And it never hurt my heart to know that people could see that she was different.
Moise has no concept of the fact that he is different from other kids. He doesn't know that other kids can do so many things that he will never be able to do. And I am grateful. Being different is hard enough, but to know that you are different would be infinitely harder.
I always knew that someday Laynee would probably know that she was different but I knew also that it would be okay. We fully intended to explain to her that she has Down Syndrome. I envisioned taking her to outings and benefits populated by children and adults with Down Syndrome. We would point them out and say, "look at her, isn't she beautiful? She has Down Syndrome. She's special just like you." We would have made sure that she had friends who were just like her. We would have taught her to be proud of her diagnosis.
Lately I have noticed that Kruz seems to be aware of the fact that Moise is different. Sometimes he sits and stares at Moise as if he is trying hard to figure him out. I suspect he wonders why in the world this boy doesn't pick him up like everyone else does. Why won't this big boy get down out of that chair and play with me? Kruz is moderately enamored with Moise's wheelchair and plays on the spokes of the wheels like an annoying harp. When we take Moise to the bathroom, Kruz crawls right behind us and tries to get all up in Moise's business. Moise, on the other hand has no idea that Kruz is different. He only knows that this little person annoys him like none other (except his little sister. Laynee was relentless in her quest to antagonize Moise.)
If Kruz senses that Moise is different, is it only a matter of time before he realizes that he, himself, is different? Will children tell him that he has funny ears? Will they ask him what happened to his fingers? Will they call him names? Will they say he's wierd or ugly or odd? And more importantly, will he know enough to realize that these things being said are terribly cruel?
Kruz's diagnosis is incredibly rare. We won't be able to take him to the neighboring town to meet up with other little one's with his syndrome. We won't be able to point out a super cool young man with Jacobsen's Syndrome and Partial Trisomy 9 and say "See him? Isn't he the best? He is special just like you?"
And this is why I cannot look too far into the future. All of these painful things may happen, but they're not happening now. Right now Kruz is very aware of the most important thing --- that his mommy and daddy love him more than words could ever say. The love is there in every touch, every kiss, every therapy session, every doctor's appointment, every blood draw. That love will be there on all of the best days and the worst days and the very cruel days. We will build him up and pray that someday, when he knows he is different, we will have taught him that his different is a beautiful different.
God is good, all the time.
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