Monday, October 17, 2011
To some the very idea of slapping a label on someone or something makes them instantly defensive. We've been so trained to think outside of the box, not to let anyone or anything define you, break the mold, not to conform... Everyone strives to be an individual, something different, special, unique. I think our generation has done a really good job of learning to celebrate diversity, learn from other people's differences, and accept individuals for who they really are. There are some people, like me, however that placing a label on something actually feels good. If it wasn't for labels we would have never known how dangerous cigarettes really are. If it wasn't for labels we wouldn't know what is in the processed food we are eating. If it wasn't for labels we wouldn't know much about medicine, expirations, care instructions, and so on. So much of my life I have struggled with multiple physical health issues. Doctor after doctor, each would tell me that they were not sure what the problem was. There was no real 'medical' explanation for the terrible stomach aches. People would tell me, it's just in your head, its just stress. I would tell them about the terrible pain that I was in and since it didn't seem to fit certain criteria they all made me feel like I was crazy. Now that I have been going to my naturopathic doctor, who is life changing, I am learning so much. After running some testes, he told me in the history of his career he has never had anyone test as highly sensitive to gluten as me. I am so sensitive in fact that the test quit testing me. Looking back it makes so much sense. It wasn't all in my head, it wasn't all because of stress. I was actually allergic to something that I was eating everyday. That's when a lot of things began to make sense for me. Now with getting a label of Fibromyalgia I have the same peace. It really wasn't any surprise. I have had these issues for years and have been unsure of what was causing me so much pain. I don't feel bound by a label. I feel freed. To me the label helps me process not only what has transpired, but gives me direction for my life. It doesn't change the way that my body feels, it has always felt that way. It gives me peace of mind to know that for so long it wasn't all just in my head. So many people have asked me how it felt when Cruz got 'labeled' and I have addressed it in some early posts. For the two years prior to diagnosis I thought there was something wrong with me. I thought I wasn't breastfeeding right, didn't choose the right foods or bottle for him, I must not have sleep trained him right, etc. When his second birthday hit and his behavior got worse and he still could only say mama and that was it, I knew I needed to get him evaluated but I still wasn't sure if I had missed some steps along the way. For two years I have been given all of the advice you can possibly imagine from everyone you can imagine. Some of it was helpful, some of it was hurtful. "If you would just spend more time reading books" or "If you would just spend more time singing songs" or "If you would follow this schedule..." The list goes on and on. I beat myself up for two years thinking I was not a good mom because I couldn't get my kid to smile, I couldn't get him to eat, I couldn't get him to do tummy time." If you'd just lay down some guidelines...." Trust me, guidelines were layed down. I really struggled with trying to understand why he seemed so delayed in certain areas. Then the diagnosis came. It is a weird feeling when you get news that is 'bad' news but you know its coming. The month prior to his actual evaluation the pressure built up like steam in a kettle. At this point I figured something was wrong but I didn't know what it was. Once the labels came, I wavered between feeling upset and feeling relieved. I know that probably sounds crazy. After two years of thinking I had been doing everything wrong, I realized for the first time that it wasn't because of my mistakes as a mother. It wasn't just because I hadn't gotten the right puzzles or books to look at. Bless his little heart he was just made special in such a way that we were going to have to do things a little different. I am okay with different. Different doesn't bother me, it doesn't scare me. The labels don't scare me. The labels gave me a guide, like a road map. So instead of taking the highway where a majority of the kids travel pretty quickly with minimal lane changes and a steady pace, we are going to go off the path. Our trail is a little bumpy, curvy, not well lit. Similar to a Baja 300 Off-Road Race. You never know what is going to be around each corner. But there are others that are on this same terrain and those that have walked this trail before us that help us along the way. We are grateful for family and friends who serve as our pit crew along the way. Providing us with prayer and encouragement. My roadmap is different from yours, but we will end up getting to the same place. It may take us a little longer, we may have some major meltdowns along the way, but in time we will get there. Our label gave us a roadmap. Without it, we might still be standing at the starting line not sure of which direction to go. So, no, I am not upset about the labeling of autism, or apraxia, or fibromyalgia. My question is simply, what's the next step. For each day that we walk what is the next step that we take. If all of the roadmaps available for life were rolled up and we each got to pick one from a big barrel, we wouldn't choose for our children to take a harder trail. However, I am so glad that we got the right roadmap for us. And we wouldn't have known which one was right without a label. Misdiagnosis and wrong labeling can be devastating. But once you have the right label, the right roadmap, your journey becomes much smoother. You begin to meet other travelers along the way with similar stories, similar journeys... there are some up ahead that are able to yell back "watch out for that step, keep going you are almost there..." And there are others just starting that we are able to reach out to and offer encouragement for their journey. Imagine arriving in a remote uncivilized foreign land and realizing that your map and your translation guide are for the wrong location. It would be incredibly frustrating. If someone could help and simply offer you the correct map and guide you would feel so relieved. That is where we are with the labels. Our five point harnesses are strapped tight and we are thankful for the added direction.