Today I was folding laundry at my dining room table. It’s not where I normally fold laundry but I was there because I needed to keep an eye on my 8 month old in the living room. Usually when I have babies that age I let them play in the living room and really in most of the house, without having to watch them too closely because my house is baby proof, mostly. But with this baby, things are different. They are different because we have a 12-year-old daughter with intellectual disability now and she cannot be trusted with the baby in the same room. She is not intentionally hurtful to him but she doesn’t watch where she walks and she is rough with him. So, I have to keep a close eye on him, unless he is somewhere she cannot get to, like his room.
As I watched the two of them play, it struck me how similar they are. The 8 month old, Luke, was playing with a wooden puzzle and taking each piece and putting in his mouth and then banging it on the floor. She was doing the same thing. It’s moments like that when her disability hits me in the face. People ask me all the time what her developmental level is and I usually say around 2 years old, but the answer to that question is really more complicated. There are lots of different areas of developement. Physically she is at about a two-year old level, cognitively at about a 9 month old level and emotionally on a much higher level closer to her actual age. It’s complicated. What makes it even more difficult is that she has significant issues with attachment and also is going through puberty and is a hormonal mess sometimes. So, I use two years old as a generalization. As I see our little Luke developing normally, he is starting pass her in a lot of ways. He is already saying three words, where she is completely nonverbal. And over the next year he will pass her completely. I have lived with her for two years now, almost, and it still baffles me sometimes to watch her disability affect her. It is heartbreaking at times and difficult for us to process.
I wonder, sometimes, what God is doing in all this. Why has he given us this child to raise? People say to us all the time we are such good people for taking her in and giving her a home and we are such amazing parents. I don’t feel that way, ever. I struggle with wondering what God is up to and why he chose is for this task when it seems we make so many mistakes. I know every parent feels that way, but its more obvious with challenging children. I feel like with our son Joshua, we are doing pretty well with him and he is making progress. He is still a challenge, but we’ve seen so much growth. With our daughter, it’s a much slower process. She is making progress, but it’s almost too slow for us to see. It has taken us a year to get her to put her shoes away in the shoe cabinet. But it’s progress.
I don’t think about the future too much with either of my special needs kids. It’s too difficult. You have dreams and hopes for typical kids, but with special kids you are so focused on just making little bits of progress today that thinking about tomorrow for too long just is scary. One thing I do think about on difficult days, is heaven. I look forward to heaven so much more now than I did before I had these two special kids. In heaven I will get to see them as they were meant to be and I look forward to that. I cannot imagine raising them without that hope.
My last thought for today is my typical kids. Sometimes I wonder and worry if I have made their lives more difficult by raising these special kids. I talked with a good friend last night about her experiences with being raised with a special sibling. She assured me I was not permanently damaging my kids, and I really appreciate her sharing her experiences so honestly with me. I hope my typical kids grow up to appreciate people of all races and abilities. And not just appreciate them, as most people do, where they just tolerate them. But appreciate them as in going out of their way to make them feel included and accepted. I know they don’t always love having special siblings and I allow them to talk about their negative feelings about it. I think it’s healthy. It’s not a fun situation all the time. It’s not for us as parents either. We all get tired of dealing with special things that special kids bring into our lives. My kids have to listen to their sister scream and bang the walls sometimes at night. That’s no fun. They have to listen to their brother melt down in the middle of the store and embarrass them for the fortieth time and there are endless doctor and therapy visits. That’s no fun and I don’t need to tell them it is. It’s okay for them not like having special siblings and it’s okay to have negative feelings about it. It’s never okay to be mean to them, but I don’t want them to ever feel guilty for having negative feelings about their situation at times. There are times when we wonder what we have gotten ourselves into as parents as well. I just hope in the end that they are able to see the world in a better way from having lived this life.