As a parent, all you want is to be able to take away your kids pain, protect them from harm and offer them healing. But this scoliosis thing - it's so out of our control. Each cast day or follow up appointment; we just don't know what to expect. My friend's post today brought me right back to one of those days... It's an emotional roller coaster to say the least. And it's so HARD TO EXPLAIN! I've tried before... but here goes again:)
You don't know whether you should hold out hope that there was correction, or if you should brace yourself for bad news. And although you try to do both in the weeks heading into an appointment, it's hard to deny the human nature of hoping for the best. Even if you try to keep it as a really quiet voice in the back of your head. It's still there. You still imagine the reality. A reality that doesn't involve repetitive anesthesia and serial casting. A reality where you can cuddle with your child whenever you want, tickle their ribs on a daily basis, and simply bathe them when they are dirty. I've been there. You try to keep that vision quiet as you head into the hospital. But it's hard.
For any and all of you that may benefit.... The most helpful book I've read in recent years is "Lessons in Loss and Living". It's mostly focused on dealing with grief. And although you may think you'd only need this book when someone close to you has died, it's about so much more than that. We all feel grief... whether our loved one has passed or just faces a reality that is different from what we've all envisioned. My mother pointed out very early in Makenna's diagnosis, that there is such a thing as the 'grief for the death of a healthy child'. Not that the child has died, but that all those thoughts you had for them. all those dreams, all those hopes, everything you'd ever thought there life could, would, or should be - might not.
I knew in the beginning that the most real feeling I was feeling was grief. But I felt guilty for feeling it. My child was alive. My child had not been given a death sentence like cancer. We had found a treatment that provided hope. The first person I ever told about Makenna's diagnosis responded with, "Oh, dear. What does this mean? Will she be in a wheelchair?" And I immediately felt bad for the tears. Well, no. She won't be in a wheelchair. And you know what... I'm wasn't really sure what it all meant. I just knew that I was sad. I was angry. And I wanted to pretend it wasn't real.
I was in shock. I hadn't been able to process it all and there were times and moments that I had forgotten. As if by not thinking about it; it would disappear. I'd wake up in the morning and for the first 10 seconds everything was OK again.
I was in pain. And I felt guilty. Why hadn't I noticed sooner? Why hadn't the doctors? What could I have done differently that would have changed the outcome?
I was angry. Why Makenna? Why my baby? Why my family? What had we done wrong? She was just a baby. How could this happen?
I was depressed. We all have dreams for our kids. I had to reflect on all of these and see which ones I had to throw out before she even had a chance to try them. What I had thought about her reality; just might not be possible. Could she be an Olympic Gymnast? Well, probably not. In fact, gymnastics or any other sport just might not be in the cards for her. I still don't know. Kind of hard to come to terms with something you don't know the answer to...
All of these things are typical stages of grief. Shock, guilt, anger, and depression. And all of these emotions come up with each cast. Each check up. Each x-ray. It's like experiencing a death in the family every 12 weeks. Which is why our veteran families become numb. No one can handle that kind of grief on a cyclical basis. It's just not healty. So the coping strategies carry through. But they can't possibly always work.
This experience, this journey, has taught me so much about the importance of human connection. Share your struggles, share your smiles, share your failures, and share your victories. It's a human experience and you are going to need all the support you can get.
I am, for the most part, past all the feelings that resemble grief. I still feel them on occasion - like tonight. Makenna fell asleep on the way home. I put her to bed without her brace on. What damage have I done? What if this one night makes all the difference? Will it be OK? OMG - her next appointment isn't until May!!!!! It will be forever until I'm certain. All of those thought go through my mind, but in the big picture I know one day can't make the difference. My rational thoughts far outweigh the irrational:)
So, I am on the other side now. I feel very empowered and fully accepting. Well, I am still a little nervous when I look at her back and on (very few) days feel the need to highlight her spine with a sharpie. By the way, I've haven't yet caved to the temptation of the sharpie... I am not sad. Or angy. Or depressed. I feel very confident that this experience has happened to our family for a reason. There is a greater plan.