Every time January hits, I feel inundated by inspiration. Facebook posts about people feeding the hungry. Instagram posts about people conquering fears and climbing mountains. Blogs about how someone faced their worst nightmare and became a better person because of it.
After I had Mia, I read a lot of inspiring blogs about kids with Down syndrome. And I started writing about what I was experiencing in my own blog, mostly because I was trying to understand what I thought about it. And writing is how I sort out the mess of thoughts in my head.
Unfortunately, after Mia was born, the mess of thoughts I was sorting out included all the things I was just never going to be able to do. I had a list. I had imagined an extensive list of how my life would never be the same. Not very inspirational.
It was quite a list.
1. I was never going to be able to leave my house.
2. I was never going to be able to travel again.
3. I was for sure never going to be able to take the kids anywhere alone.
4. My kids would never have a loving sibling relationship.
5. My daughter would never be a “normal” little girl.
6. She just won’t have any joy in her life.
7. She’ll never have friends.
8. She’ll never learn how to read and write.
And the list goes on, and on, and on. What I realized soon was that all of those thoughts came from a real place of prejudice. Because clearly, Down syndrome is a “terrible thing.” Or so I thought I understood.
And of course, none of those things came to pass. It was all fear. None of it was real.
Of course I left my house. We went to Colorado that same year on a trip. I took the kids somewhere alone on an almost daily basis. My son loves his sister more than I can even describe. She would be offended if I told anyone she was “normal.” She is clearly a princess. Her joy is contagious. She has a lot of friends and talks about them daily. She started writing her name this year and has started to show understanding of words.
Then I got divorced and became a single mom, and I started a new list.
1. How will I travel alone?
2. How will I ever work and take care of them?
3. How will I handle the day-to-day care of a child with special needs alone?
4. How will I give them a normal childhood?
5. We’ll never do anything fun!
6. I’ll never be able to potty train her alone.
7. All hope is lost … and so on and so forth.
And again, fear, fear, fear.
And of course, the kids and I have already traveled alone multiple times. It gets easier and easier as Fynn gets older and can help. Somehow I both work and take care of them (it’s all a blur). I realized pretty early that I was already handling the day-to-day care of Mia. I’ll put the next two together. They do not have a normal childhood; they have an awesome childhood and lots and lots of fun. Potty training wasn’t easy, but we’re doing it. Every day. In fact, she hasn’t had an accident, even overnight in so long I can’t remember.
And all hope is not lost.
Sometimes a friend will say something like, “I could never do it.”
I think this is the part where I’m supposed to say how hard it has been to raise Mia, but I’m doing it. We work hard and persevere. Inspiration, inspiration, blah, blah, blah.
But here’s the secret. I don’t believe my kids are any more difficult to raise than anyone else’s children. Mia is an easy kid. Oh, she has her stubborn moments. She’s a very sassy banana. But she also listens and does what she’s told. Sadness is easy to sooth with a big hug. And it’s really, really exciting to watch her grow up.
But I recognize there are challenges I face on a daily basis that other people don’t. Wait … hold on … there are fears I face on a daily basis that other people do not.
Last week, I took Mia and Fynn to Sesame Street Live. I was terrified. We’ve gone to the theater before, and you’d think I’d be fine. But I started another list in my head, “What if she doesn’t like it?” “What if she won’t go to the bathroom?” “What if we can’t find a close parking garage?” “What if it snows?”
Aside from the snow, none of those things came true. And even the snow wasn’t so bad.
And then during the show, I started to get all teary eyed. Cause I thought about my list. All the fears I had about how she wasn’t going to have joy in her life. Will she ever enjoy things? She won’t be “normal.” And here was my little girl, in the presence of her favorite characters, shouting out their names (oh, she was never going to talk, too), waving, laughing at the right moments, and having the time of her life.
I know I’ll always make lists. But now I know it’s just the fear creeping back in. And I just have to ignore the list.
But there is one thing I was 100 percent right about. My life has never been the same. And isn’t that an amazing thing?