This whole journey that we've embarked on has taught me a lot about life, a lot about myself, and a lot about human nature.
A friend of mine has a son with infantile scoliosis. That sounds funny because, honestly, A LOT of my friends have children with infantile scoliosis... They are new friends that I have met along the way. They have all helped me and contributed as we weave our new "reality". Anyway, my friends son was just referred to a genticist to check for a connective tissue disorder - which would explain the flexibility of his spine and some other things. When she called me yesterday, I can't even tell you what my initial reaction was ~ because I don't know. I can't unweave them...
My heart sank. I knew that if it is a connective tissue disorder, than his scoliosis is not idiopathic. This journey will not be over after he safely makes it through his toddler years. It will continue. I knew what she was feeling because Makenna's journey will continue too. At least until she is skeletally mature. We will have to watch her closely the entire time she grows. And who knows what nature holds in store for her. There is no certainty. So, although I knew what she was feeling, I didn't have any great words of comfort to offer; and I think that's because I know there really aren't any. There is nothing that takes that initial feeling away. It's necessary. It's necessary in order to come to terms with the whole thing.
Here's the thing... as humans I think we all want the same basic things. We want stability and security. Those two things give us a since of comfort and safety. Once those have been taken from you and you are not sure what is going to happen next or what the path will be, you have a terrible sense of imbalance and fear. That's what this thing - scoliosis - takes from us. And it's name is deceptively benign. Progressive Scoliosis. When I think progress; I think positive and improvement. That's not that case with this. More accurate adjectives that my brain associates withthe whole thing are aggressive, persistent, degenerative. Those are words that call to action. It must be stopped before it gets worse. Progressive just seems so mild...
As parents, I think we all want the same basic thing, too. We all want better for our kids. Better than we had, better than we experienced. All of our regrets - we don't want our kids to experience them. Some people try to shelter their kids from anything that may harm them. I have always believed in empowering my kids with the ability to make better choices than maybe I did. Either way, we try to keep our kids out of harms way. And with scoliosis, there is little we can do. I would gladly shoulder this burden for Makenna if I could. But I can't. So when I watch her take some extra time to climb in our out of something because of the cast; I feel a twinge of guilt. That I am not bearing her pain. That I haven't made it go away. That I haven't kept her from harms way.
But I know I am doing the best thing for her now. And it will all work out however it is supposed to. And I will continue to look for the gift. It's here. I know it is.
A friend of mine has a son with infantile scoliosis. That sounds funny because, honestly, A LOT of my friends have children with infantile scoliosis... They are new friends that I have met along the way. They have all helped me and contributed as we weave our new "reality". Anyway, my friends son was just referred to a genticist to check for a connective tissue disorder - which would explain the flexibility of his spine and some other things. When she called me yesterday, I can't even tell you what my initial reaction was ~ because I don't know. I can't unweave them...
My heart sank. I knew that if it is a connective tissue disorder, than his scoliosis is not idiopathic. This journey will not be over after he safely makes it through his toddler years. It will continue. I knew what she was feeling because Makenna's journey will continue too. At least until she is skeletally mature. We will have to watch her closely the entire time she grows. And who knows what nature holds in store for her. There is no certainty. So, although I knew what she was feeling, I didn't have any great words of comfort to offer; and I think that's because I know there really aren't any. There is nothing that takes that initial feeling away. It's necessary. It's necessary in order to come to terms with the whole thing.
Here's the thing... as humans I think we all want the same basic things. We want stability and security. Those two things give us a since of comfort and safety. Once those have been taken from you and you are not sure what is going to happen next or what the path will be, you have a terrible sense of imbalance and fear. That's what this thing - scoliosis - takes from us. And it's name is deceptively benign. Progressive Scoliosis. When I think progress; I think positive and improvement. That's not that case with this. More accurate adjectives that my brain associates withthe whole thing are aggressive, persistent, degenerative. Those are words that call to action. It must be stopped before it gets worse. Progressive just seems so mild...
As parents, I think we all want the same basic thing, too. We all want better for our kids. Better than we had, better than we experienced. All of our regrets - we don't want our kids to experience them. Some people try to shelter their kids from anything that may harm them. I have always believed in empowering my kids with the ability to make better choices than maybe I did. Either way, we try to keep our kids out of harms way. And with scoliosis, there is little we can do. I would gladly shoulder this burden for Makenna if I could. But I can't. So when I watch her take some extra time to climb in our out of something because of the cast; I feel a twinge of guilt. That I am not bearing her pain. That I haven't made it go away. That I haven't kept her from harms way.
But I know I am doing the best thing for her now. And it will all work out however it is supposed to. And I will continue to look for the gift. It's here. I know it is.