I was so touched by the responses I received after my last post. A few people emailed me to share their own struggles with their own precious children. Wow! I completely did not expect that response. I had long wanted to write about Mara and I finally did and it felt great. It feels so incredibly awesome to open up about something so personal and have just a few people respond to say that they really get it.
So, now I am struggling with what to write about next. Should I write about Mara’s progress in overcoming her debilitating fear of public bathrooms? Should I write about the two incredible hugs she’s given me in the past few weeks: one right after we came home from the Imagine a Way meeting where we found out they are going to sponsor Mara and the other right after I published my last blog post? She’s always given great hugs, but these two hugs were different and seemed to indicate that she knew something wonderful had just happened. I’ve started to write several times, but I get stuck and wind up starting over. So, I’m going to take a break for a minute and write about Stella.
Stella is 9 months old today and she is an absolute joy. She is starting to really develop her own personality and it is so fun to watch. At her 6 month well check I expressed my concern to the pediatrician about Stella developing autism. He pretty much laughed at me as he watched her chuckle at every face Reese made at her. He said that her interactions with her sister lead him to have no concerns about her. I didn’t even stop for a second, though, to feel relief, because when Mara was 6 months old we had no concerns about her either. She laughed at Reese the exact same way that Stella does now. I have video to prove it. I live in a constant state of worry that we will face the same things with Stella and it sucks. I am pissed at autism for robbing me of the chance to sit back and enjoy my adorable baby. If she waves her hands, I immediately wonder, “is she waving or flapping?” If she doesn’t answer to her name immediately I freak out. I’ve been working with her on clapping hands and she still isn’t doing it. I sit there with her and say, “clap your hands, clap your hands” and I think, “Come on baby, just do it. Clap your hands and then I will know that you don’t have autism.” It is a horrible feeling to have. I haven’t shared this with many people. If I do, I know they will blow me off and say, “she’s fine, don’t worry.” They will be well-intentioned and they will really believe what they say, but I can’t shake the worry because that is the exact.same.thing everyone said about Mara.
What does help is something that another autism mom said when I first expressed this worry to her. She said, “so what if she does have autism?” So I sit back and I think about it and I think, “Would it be so horrible?” The quick answer is yes. It would be horrible. I don’t want another child with autism. Who would? But then I think, “So what if I had 2 children just like Mara?” and then I smile. I can breathe a little easier and worry a little less because Mara is awesome. She is difficult. She hits me and kicks me. She gets so frustrated because she can’t communicate what she wants. She can scream her head off for half an hour or more and sometimes she even hurts herself. But, she hugs like no one else can and her smile is fabulous. She blows us away on a daily basis when we get a glimpse of just how brilliant she is. Yesterday she opened a book that I have read to Reese a hundred times. Mara has never shown the slightest interest in it, but she’s been listening (because like any other autism parent will tell you, eyes are not ears). She opened that darn book to the last page and read the whole thing. I never knew that she was even listening.
It seems that my post about Stella has turned into another post about Mara, but I like it. To write about my fears and share them with others makes them a little less horrible. Thank you all for reading. It means a lot to me to let a few people into our challenging, wonderful world. I hope you’ll come back again and share with me some more about your amazing children and your struggles and triumphs.