Before Hannah, I would look at other parents of children with special needs, especially moderate-to-severe special needs, and think “Wow, that is a lot of work, how do they do that? I don’t think I would be able to do that.” But that is all I saw — the “work” that was involved in taking care of a special needs child. For whatever reason, I never saw anything beyond that.
Here I am with a special needs child now. I think back at that feeling I used to have, and now I get it. You just do it. You do what you have to do to keep your children happy and comfortable. It doesn’t bother me that we have over a dozen therapy sessions each month or that we always seem to be going to a doctor’s office for a visit or hospital for some procedure. I know why families fall into financial distress because of this responsibility and just accept it because the alternative of not providing every need is not an option. It just becomes a part of life.
But there is a huge reward to all the “work” that goes in to taking care of her.
The reward is Hannah’s smile, her happiness, and her absolute and unconditional love she shows me and the rest of our family. All the extra “work” taking care of her and researching for a treatment for her is just so worth it just to be able to cuddle with her, smell her, and watch her learn and explore at her own pace. She truly is an intoxicating child, and I just love every minute I get to spend with her.
I look back on the past year. This time last year, I was on what would become 2 months of strict bedrest because of pregnancy-induced hypertension (which never left after Hannah was delivered). That entire time it was always “me” they were worried about because “the baby” looked so healthy and was doing great. Never in a million years would I have expected what we have encountered since she was born.
There have been a lot of tears, a helluva lot of worrying, and so much fear in wondering the what-when-how-and-where of the progression of her disease. There has not been a day that has gone by that I haven’t thought about it. Even with each step forward, it is right there in the forefront of my mind. It is even stroner on those days we have a set back.
But now I understand why they say “each day is a gift” because with Hannah, every day I spend with her right now is a true gift. I have spent almost every awake hour of every day with her since she was born. She is a true light in our lives, and she has positively affected Ethan, Abigail, Daddy, and I. Our family and friends have fallen in love with her.
She truly is a special, special little girl. She is “my” special little girl.
It’s amazing how your perspective changes, isn’t it? I’m always surprised when people make comments to parents like us about how “lucky” our kids are to have us– seems to me that we’re pretty lucky to have them!
I think that knowing your child’s life will likely be shorter really makes you cherish all of those moments that would otherwise slide by, and makes each milestone they hit an incredible achievement, whether they hit it on time or a few years behind.
Know that you guys are doing a fantastic job.
~Jess
So, now you know. No one outside the “club” can understand why you would put everything on the line for your child, until they walk in your shoes. It’s why I thank God every single day for Olivia. I have learned to never take a single day for granted. I love her personality and her laughter and imagination and all that makes up who she is. Just like Hannah!