Having a child with a disability is a challenge to say the least. It’s not something my husband and I had signed up for. When we got our daughter’s official diagnosis in the hospital (right after she was born), I was devastated. It completely knocked the wind out of me because my greatest fear had come true.

During my pregnancy, the possibility of this happening was discussed and suspected. I was quickly reassured that everything was going to be fine. But really deep down, I knew and just chose to be in denial about it. I didn’t want to have any confirmation one way or the other. Afterall, ignorance is bliss! And, I needed to keep that uncertainty to get through my pregnancy. 

My husband, on the other hand, just knew it was true and decided to keep it to himself. He knew that if he told me what he truly thought, it would have made the whole pregnancy so much harder.

I had always thought that if I ever had a child with a disability, my world would come to a crashing end. I was deathly afraid of that with my first pregnancy. What would we do if this happened to us? Our life would be over!  So we took all the necessary tests because we just had to know. It is was a huge relief when we found out that our son was “normal.”

Looking back now, I find it funny and sad that I felt that way about having a child with a disability. I know now that it was all based on my ignorance and fear of the unknown. And guess what….my world didn’t come to an end!!  In fact, it was the opposite.  My world is so much better and brighter because of my daughter. She has opened so many doors for our family. Personally, she has given me the strength and courage I never knew I had. But that conclusion wasn’t reached overnight. Sure it was extremely hard and it took a very, very long time to get to that point. Now, don’t get me wrong. We still have bad times and do struggle with it, daily. And sometimes it all really sucks! But each time we crawl into that deep dark hole, it gets easier to pull yourself out of it.

When you have a child with a disability, you do feel very sorry for yourself and go into a sort of mourning for what you thought your and your child’s lives were going to be like. So your plans change and you are now on a different path. It is extremely hard at times and there are constant reminders. Especially when you compare your child to other children. It’s inevitable. But here’s what I learned, if you only focus on what your child can’t do, you miss out on what they can do!

At the beginning of this journey, a friend suggested that we read an essay written by another mom with a child with a disability. It really helped us understand all of our feelings. It was written in 1987 by Emily Perl Kingsley. It is called “Welcome to Holland” and I encourage you to read it. Here’s the link: http://www.our-kids.org/archives/Holland.html. It is beautifully written and expresses exactly what it feels like when life throws you a curve ball.

Even though this path was not what we had in mind, we wouldn’t change a thing. We are truly blessed to have the family we have. My daughter, the Princess, is smart, beautiful, loving, caring, and thriving. She also is stubborn, has to have her own way, has some major attitude, annoys her brother, and doesn’t listen to me, basically your typical kid.  We know that as she gets older, things are going to get more challenging. We will just have to take them as they come. That’s just how life is.