Wednesday, February 9, 2011
As many times as you may hear me say that "I don't care what people think," that really isn't true. For as long as I can remember, I have probably put an equal amount of energy into trying to be both unique, and respected all at the same time. I don't want to "be like everyone else," but at the same time, I abhor feeling so dissimilar that no body understands me at all.
I have a child who is VERY different from most. Sure, all of our children are wonderful, unique, spirited little blessings....but throw disability and disease into the pot, and all of the sudden I have a whole new set of circumstances to navigate, a whole different set of priorities, challenges, celebrations, worries and feelings. A whole new life than what we expected or planned for all together. I'm not necessarily complaining, it's just what is.
I have used this blog many times to try to convey what that is like. How our experience has transformed us, and continues to shape our every day, our every experience, our every mood and attitude. I have used this blog to help me sort through my own feelings of love, pride, grief, sadness, guilt, anger and so on. For the most part I have been completely honest, but recently, following two very judgemental and negative comments regarding my words, I have felt a little more cautious to say how I really feel. A little more guarded and defensive about sharing the darker sides of dealing with disability. Maybe I should have been a little more private about who reads this? After all, if you don't KNOW me or Avery specifically, trying to understand where I am coming from may be damn near impossible. But I digress..
So what, you might be asking yourself, is the purpose of this post? Just as I want to be both unique and accepted, I also want to try to share how it is you can love someone so much who has Autism, yet hate the "autism" all at the same time. I LOVE and appreciate all that Avery teaches me on a daily basis, and really do believe that in time we will be better because of disability, but I also hate what Autism takes away from my daughter and my family. Just as the snow and ice outside are beautiful, it sure does make traveling on the roads treacherous.
Maybe it all goes back to how we define our children. I must admit that every time someone describes Avery, or anyone for that matter, as "autistic" I cringe and die a little bit inside. She is so much MORE than that, and after all, she is a child first. So I always say, "this is my daughter Avery, and she has Autism." If I keep the two separate, then when I say I am having an "I hate Autism day" it doesn't EVER mean that I hate my daughter. Just as if you say you hate cancer or diabetes, or the freakin flu, I am allowed to dislike Autism sometimes, and not always find it fascinating, easy, amusing, or beautiful. But I assure you that every moment of every day I love my daughter. No matter what. Autism or no autism. Without end. Without conditions. But of course I still have fears, anxiety, anger, and sadness. I'm sorry it's not all positive rainbows and butterflies.... some days it's REALLY hard. Others are pretty great. It's life. And it's one I am incredibly happy to be a part of.
So there. I will not apologize for my feelings. I won't tell you that it's all ok, because I don't know that it is, or that it will be. But for today, for this moment we are hanging in there. Today we are still searching for answers. We are still trying to manage Avery's symptoms of mastocytosis which are seemingly terrible, and determine why her developmental progress is so painstakingly slow.
A few facts about where we are today: Tomorrow Avery will have her 5th set of ear tubes surgically placed, then in the next week or so will undergo a 24 hour hospital stay to run several tests to determine seizure activity, run more blood work etc. Her doctors think she may have a second autoimmune disease called landau kleffner syndrome, and/or Rett Syndrome. Her motor skills, while somewhat improved, are still very impaired, and she is unable to run, kick a ball, jump, skip etc. She walks WAY up on her toes, and can't bend her ankles the other way at all. She is still no where near potty trained, is completely non verbal and remains very much in her own world. If you let go of her hand she would wander off in a second, and doesn't respond to verbal commands very well at all. She is still working on self feeding, and can drink from her straw sippy cup. She will be five years old on March 28th.
Now, for the positive spin on the aforementioned facts: IF Avery has landau kleffner syndrome, then anticonvulsants and steroids SHOULD help her developmental skills. If she has Rett syndrome, there are some promising animal studies in process for certain drug therapies that could one day help her. Since she can't run, when she wanders off she is pretty easy to catch. Since her motor skills are impaired, she has yet to figure out door locks so wandering away from the house is not a problem! Diapers are easy to change and now she gets them FREE through the medically dependent children's program! Since she doesn't talk, she also doesn't complain or talk back, though we usually know when something is wrong because she cries or whimpers. Her five years on this earth are FULL of purpose. She has shined her light on so many hearts and has improved my life, my perspective, my heart and my soul tremendously. We are blessed to have her... autism or not. And though I hope and pray for her to get better, and for her to have a complete life, I also wouldn't change much of our journey so far.
We are lucky to have her. Her sisters are and will be lucky to share in her life. And even though Autism has "taken away" a lifetime of possibilities, it has also given us life lessons for which we are so eternally grateful. The dichotomy of it all can be overwhelming, but we are in this for the long haul, and everyday I feel a little bit stronger, and more capable to push forward. Nobody knows what lies ahead. But for us, we choose to be grateful for our loved ones and our time together. And we ALL can relate to that.