Life isn’t fair.
I’ve heard that too many times to count. I know that, indeed, life is not fair. I will never understand why some people face more struggles than others, but it doesn’t mean I can’t be angry about it.
To be blunt, I’m at the point in my stages of grief that I’m angry about what has happened to my family.
A few days ago, we went to the Orange Beach Arts Festival at the Coastal Art Center that sits right on the bay. There were many vendors, craft stations, and performances to enjoy, but I didn’t enjoy a second of it. Instead, I thought about this beach. Before AFM, Annadelle would have begged to take her shoes off and wade in this water. The sad thing is that I probably wouldn’t have let her.
But now? I wouldn’t hesitate to say yes if she could walk. I would give anything- literally anything- for her to be able to walk and enjoy life as she once did.
As we walked to the end of the pier, I was overwhelmed with sadness. It was a beautiful day with gorgeous weather, but all I could think about was that beach and how much I wished she could walk along and play in it.
It breaks my heart to know that the only way she can truly experience so many things is for one of us to hold her or carry her to it. She no longer has independence. She can’t brush her teeth by herself or brush her hair. She can’t get herself dressed or use the restroom on her own. Getting her dressed or giving a bath is a huge effort in itself. I try to focus on the things she can do, but it is quickly overshadowed.
We are exhausted. Mentally and physically, Chris and I both are worn down. We have spent so much time living in hospitals that it’s almost like we don’t know how to function outside of one anymore. Living our lives is now more a chore than a joy. We have lost ourselves. We don’t have many friends here and are both very lonely.
Of course I recognize this. I know there is a problem, but it does not feel like there is a solution. The solution would be for Annadelle to walk again, and I feel like we have been trying everything we know to get her to walk again, but God has not answered that prayer.
Every. Single. Night. I beg Him for her to walk. I don’t feel like he hears me. I see so many stories on the parent group from parents whose kids were affected like Annadelle was. Many of these kids are walking, playing, enjoying their daily lives. While I am truly overjoyed for them, a big part of me is so jealous. Why isn’t Annadelle able to do those things? Why doesn’t God fix it? Does he see all of these tears and hear these cries for help, for healing? It doesn’t feel like it.
I am so worried this is all of the recovery that she will get. I can’t help but battle this feeling that I have failed her already. I am not strong enough, mentally and physically, to do this for the rest of her life. I know that there are kids who recover with time, but I don’t feel like I am strong enough to do this for another year, two years, three years or more. Surely God knows this.
I am truly carrying more than I can handle.
Even still, we are continuing to try to get in enough therapy at home every day, praying that this therapy helps to strengthen her arms and legs. She is not tolerating the stander for very long at all and cries after about 30-45 minutes. We try to keep her motivated or distracted, but it isn’t working well.
We were finally able to order her SPIO vest, but I have no idea when it will be in. Hopefully we will get it soon because her posture is struggling and she has already developed scoliosis. The rep from NuMotion is meeting us tomorrow to measure her for her new wheelchair. I am praying that it comes in quickly and that insurance approves it.
Most of all I am praying for healing for Annadelle. I know that God has worked miracles in our lives while we were in the hospital. I saw it with my own eyes on several occasions. I am praying for another miracle, and that is for Annadelle to walk again.
Please pray for us. We need it.