Why can’t Sebastian walk? Why can’t he talk? Why does he do that with his tongue when he is eating? Why do loud noises bother him? Why is it so hard for Sebastian to sit up, to burp, to eat?
Last summer I told my nephews about Sebastian. I told them when he was born his brain was hurt so that meant he had to learn how to do things that come easily to us, like walking and talking. I told them that it might be awhile before he could do these things. I told them that he might do them differently than we do. I didn’t tell them that we don’t know if he will do these things because we believe he will. But we just have to wait and see.
Ethan seemed sad and asked a few questions, then he got down on the floor to read Sebastian a book. Logan could have cared less, he just wanted to play on the swings with Sebastian. There weren’t that many questions because Sebastian was still a ‘baby’, just a little over a year old. This summer the questions sometimes come all at once. Last summer I tried to explain things to Logan and Ethan because they were the older cousins. This summer I wait until there are questions and do my best to help his cousins understand him.
Logan has been happy to accept that Sebastian does things differently or not ‘yet’ because he’s a baby. He’s been here to watch and encourage Sebastian to take steps in the gait trainer. He’s been here to sit and play with him while he’s trying out the theratogs. He thinks it’s gross when he drools or spits his food out. He’s been here when Sebastian had a seizure and my mom and I took him (Sebastian) to the hospital. He doesn’t see Sebastian as different. He looks past each of these things and sees him as his cousin Sebastian. His cousin who needs extra attention. His cousin who laughs at him regardless of what he is doing because he is so funny/silly. His cousin who loves to listen to him read books and play with his toys with him. His cousin who loves him.
Logan notices the things Sebastian can do and the things he doesn’t do. He makes comments and sometimes asks questions but most of the time just takes him as he is. I decided to try to help Logan understand that the reason Sebastian doesn’t walk or talk right now is not because his is a baby but because his brain got hurt when he was born and so his body works differently than ours. And that he has something called cerebral palsy. I read a book with him called Nathan’s Wish, about a boy with CP in a wheel chair who wants to help his neighbor take care of owls. He isn’t sure how to help because there are so many things he can’t do. He feels sad and frustrated but in the end finds a way to get involved and help out.
We read the book together and talked about Nathan. Then we talked about how Nathan has cerebral palsy and so does Sebastian. Then we talked a little bit about what that means. Once Logan understood that things are harder for Sebastian and that he has to learn how to do things that come naturally for other children, he said ‘well Sebastian must have it really bad because he can’t walk or talk.’ It was like he was describing the level of cold Sebastian had, not his type of cp. I tried to help him understand that we don’t want to feel bad for Sebastian but to help him do the best he can at the things he can do and help him learn new things too. He understood. And then he wanted to go downstairs to play with Sebastian. Logan is almost 8 years old. And I love the way he loves Sebastian.
Ethan is Sebastian’s oldest cousin. We haven’t seen him that much this summer, but the few times we have they’ve really had a lot of fun together. Ethan loves to play with Sebastian. He loves to help him play with toys. He builds forts and takes Sebastian inside, only to take it down because maybe Sebastian doesn’t like being in the dark so much. He was here when Sebastian had a bunch of equipment on top of his head and a crazy cool hat to cover it up while he was going through the two day EEG. Ethan sat on the couch and read him at least a half dozen books, acting them out. Sebastian and Ethan laughed together and we laughed with them. He asked about seizures and I had a harder time explaining that one. It was before he was having seizures so I didn’t say much.
I didn’t want Ethan to worry about Sebastian. Because sometimes I look at his face when I’m telling him something about Sebastian and I see a little bit of worry. Like he doesn’t want Sebastian to have a hard time doing things in this life. Last summer he asked when Sebastian would talk or walk, this summer he understands that we don’t know. We showed him the GoTalk that Early On brought over for Sebastian to try and we talked to Ethan about helping Sebastian to communicate in ways other than talking. Ethan recorded a message for Sebastian on his GoTalk. It was meant for Sebastian to push and introduce his cousin to others, ‘Hi, this is my cousin Ethan. He is nine but almost ten. He likes to read…’ More laughter. He accepts Sebastian for who he is and likes to learn about him and help him in any way he can, kind of like a big brother. He loves him and shows it in so many ways. His face lights up when he sees Sebastian and he can’t wait to give him a big hug. He’s happy the whole time they are together. I love it.
Parker is just six. This summer he’s much more interested in Sebastian and also curious about him. Recently we had a discussion about Sebastian talking and how he isn’t doing it yet. He decided that we should teach Sebastian sign language. But then realized that would mean we would have to learn sign language too so that we could understand what Sebastian was telling us. I love this kid. And he loves Sebastian. He loves to do silly things to make Sebastian laugh. And laugh he does. It’s the simple things in life. For sure.
Addison is just three. She loves loves loves Sebastian. Bastian this and Bastian that. As soon as she comes over she has to touch his arm and say hello. She wants him everywhere. She wants to see what he is doing. She just loves him. Simply.
More photos from the Michigan Spring/Summer 2010 set.