Have you ever knelt next to your child as he or she gets sick, or cuddled your baby with a raging fever, and just wished you could take it all away? As miserable as it is at the time, you are so grateful when it gets better and you forget about how bad it was.
I feel this way all of the time, except that it is not going to get any better--at least any time soon.
Watching my little girl cry from the intense back pain that she has recently been experiencing makes me wish it were me instead of her. I know how bad it is when she actually asks for the pain medicine that she hates to take. We aren't sure if she needs an expansion or if her kyphosis (hump) is getting worse, but it's definitely affecting her.
Hearing her sadness when she realizes she can't participate in her first dance recital because she'll be recovering from surgery brought tears to my eyes. I didn't realize that she didn't know, but she sobbed when I had to break the news to her. I had no idea how much she was looking forward to it until that moment.
Listening to her voice her fears about her upcoming surgery each night before bed breaks my heart a little more every day. She is getting older, and she is beginning to perceive the unfairness of all of this. She just wants to finish out the school year with her friends and be a regular kid. She actually told me the one thing she hates about herself is that she had to have all of these surgeries.
I wish I could take it all away.
I wish she wasn't in pain.
I wish she didn't have to have these surgeries.
I wish she could dance on the stage at her recital.
I wish she could run around without getting winded.
I wish she could just walk around the mall without a wheelchair.
I wish we didn't have to have meetings to hash out details on how to protect her from getting bumped.
But we know that God is faithful. He knows every step of this journey. He knows the struggles we face. He knows the pain Abby feels. He knows the stress all of this puts on our family. He knows my heart as Abby's mom and how I have struggled to come to grips with my genetics.
So we will continue to hold Abby through the pain, wipe away the tears, keep an open line of communication, and to love her. And we will continue to pray for her pain management, for her to begin to accept this life she has been given, and for her to come to an understanding that she has been created for a purpose.