I started a new journey this week. I am working the next few months as a 1 on 2 aid in a prechool. The boys I am working with are both diagnosed with Autism. Yesterday was my first day, so truly I haven't processed much. I imagine it will take me a week or two to know how I feel about this new position. But one thing already struck me hard and I am not surprised by these feelings, grief. Grief hits all of us who are parents of children diagnosed with special needs. Grief does not just hit once, it hits multiple times in the journey. I have experienced the feeling of loss so many times, it would be difficult to count. From the moment I was told of her condition in utero, to just last week, when Teale was with me on school break. The losses can be small and they can be gigantic, but the feeling is always the same, a gut wrenching sickness deep in my soul. The fact that she is 16 and not learning to drive hurts or the fact that she isn't a pain in the neck teenager out pushing the limits of my parental boundaries. It's funny how you even miss the age appropriate, challenging behaviors. I miss a houseful of girls sleeping over, talking about boys and how their parents don't understand them. I miss her staying out too late, testing the curfew, I miss the backtalk when I ask her to do something. I miss a lot of things as I raise Teale to be the best person she can be. Which brings me back to my new job. These parent's journey has just begun and those beginning years are quite possibly the most hopeful and when you experience the biggest losses. Teale was going to change the world and in many ways, I do believe she has. The thing is, I had dreams, dreams that were bigger than anyone could imagine for my severely brain damaged daughter. Teale has become what she was to become, maybe not quite what my dreams were, but an amazing human. I can still feel the intensity I felt though, as a new Mother of a daughter who was slowly being diagnosed with one issue or another. The labels started slow, first was cerebral palsy, then seizure disorder, deaf, then legally blind, they kept coming... As soon as I could grasp one, a different specialist would throw another our way. I not only had to try to learn all I could as the diagnosis came in, but I had to teach others in our life too. Family and friends needed to understand, but also, at times, Mark and I would purposely hold back information. We had strong feelings that the less people who knew the severity, the better. After all, if you expect a child to be less, because of severe brain damage, might that prediction cause less to be achieved?
Teale has surprised many, she has done far better than doctors expected or predicted, but the losses are still tough to overlook. I, for one, ALWAYS expected we would overcome the lack of use of Teale's right arm and hand. I was sure we could get her to use it in a normal way by now. That has not happened. It is a loss that is in my face every single day. I have tried to forgive myself. But there will probably always be some level of doubt, that I could have done more. If only I had tried more therapies or worked harder with her when she was a baby or researched this or that, Teale would use both her hands. This is part of the grief that I experience daily. This is part of the pain I know new Mothers will go through.
Being with a family as they start this new journey, I pray that somehow my years of experience can ease their pain. Helping these two young boys find their way, even for just a fraction of their life has to have meaning. I'm sure this is not a coincidence that I fell into this job. Remembering what it was like when Teale was a preschooler swims in my head much. I remember the hopes, the fears, the feelings of being alone, but I also remember the many people that held us up in those heart wrenching times. I would have surely fallen without their love and support. If nothing else, may I pay that forward...
Teale has surprised many, she has done far better than doctors expected or predicted, but the losses are still tough to overlook. I, for one, ALWAYS expected we would overcome the lack of use of Teale's right arm and hand. I was sure we could get her to use it in a normal way by now. That has not happened. It is a loss that is in my face every single day. I have tried to forgive myself. But there will probably always be some level of doubt, that I could have done more. If only I had tried more therapies or worked harder with her when she was a baby or researched this or that, Teale would use both her hands. This is part of the grief that I experience daily. This is part of the pain I know new Mothers will go through.
Being with a family as they start this new journey, I pray that somehow my years of experience can ease their pain. Helping these two young boys find their way, even for just a fraction of their life has to have meaning. I'm sure this is not a coincidence that I fell into this job. Remembering what it was like when Teale was a preschooler swims in my head much. I remember the hopes, the fears, the feelings of being alone, but I also remember the many people that held us up in those heart wrenching times. I would have surely fallen without their love and support. If nothing else, may I pay that forward...
