I recently read a blog post by a man who had written a book about his autistic son. He was responding to someone who said his book was too positive, that it was impossible that he could be without sadness or regret about his son. I haven't read the book, although I plan to, but the question and his response struck me. He said he really hadn't felt sadness or regret. I must say that's incredible, and I can't say the same, but I can understand some of what he was saying.
I do feel sadness about Janey a lot. Some of it is for her, and some of it is for me. I feel sad about the things she might not ever be able to do. One of the biggest of those is reading. I love to read. Reading is a huge part of my life, probably my biggest pleasure outside my family. I can't even imagine a life without reading. So that makes me sad. I feel very sad she might not be able to marry and have children. As a woman, that has been the best part of my life. I feel sad she may never have a best friend, never have a love affair, never go to college, never live on her own. I know there are people that live happy lives without ever doing any of those things, but I think most people would agree they are a big part of life, and I have sadness she won't (probably) do them.
And I feel sad, sorry, for myself. I probably won't be by her side as she gets married, or has a baby that will be my grandchild. I won't be able to guide her through the excitement of a first crush, or introduce her to my favorite books. I don't get the fun of having other kids ask her over to their house, which is a main way mothers socialize with each other, also. She isn't into collecting Littlest Pet Shops, or American Girl dolls, or Barbies. That might seem like a silly thing to regret, but I do. I looked forward to sharing things like that with a daughter, things I like and wanted to do with a daughter. Of course, there were no guarantees any of those things would happen with any daughter. But still, I will be honest and say that those things make me sad solely for myself.
But I can honestly, honestly say that there are many unique joys Janey brings me that are special to her, that might not be the case with the other, imaginary daughter I don't have. Janey loves me without reservation. There isn't the tension many mothers and daughters have, and there probably won't ever be. I don't say about Janey what parents often say, and what I have come to see is truly a hard part of parenting "They grow up so fast!". Janey grows up slowly. We get to enjoy each stage, and look forward to each new one, without them all rushing by. I appreciate her beauty, which seems shallow, but I do. I like being able to dress her, and to be honest, it's kind of fun that she usually lets me have her wear what I want to have her wear. I love her unfettered joy in the things she loves---how hearing a song she likes or seeing a show she likes or eating food she likes can make her so happy she dances around the room. I like snuggling her as she falls asleep. I like her quirks, sometimes---the odd little things she loves and enjoys, like Kipper or raw onion or Christmas carols. I love so many things about her.
So---yes, there is sadness. I wouldn't lie and say there wasn't. But there is happiness, too. That is the case with all children, I am sure, but I am pretty sure the sadness is often more with a child with special needs. That doesn't mean we don't love them as much as it's possible to love them---maybe even more than we would without the balancing sadness.
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