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Sunday, October 7, 2012

Changes & Blessings, part 6

I go to sleep worried, this is my normal, but when it comes to seizures, nights are the most worrisome. I say a prayer, asking God to protect Teale and to wake me quickly if she does have a seizure. With exhaustion setting in after several nights of worry, I pray I wake if Teale needs me. My fears of my sleeping through a seizure are huge. Mark is unlikely to wake, he has never in the past until I have and then alerted him. It's a lot of pressure to live with every night, but I am a faith filled person, so I often look at life as "God's will." He will wake me if Teale needs me. The morning comes and Teale seems much better, maybe "they" were right, it was too high a Lamictal level in her bloodstream. I start to feel more relaxed, we are back to "our normal." Hopeful once again that Teale is safe, that her body will stop fighting itself, my fears are dropping with the passing of time. She continues to cherish the new American Girl catalogs, saying to me, "That was so nice of Leah!" my friend's daughter who gave up the catalogues for Teale. Teale owns some dolls similar to the American Girl dolls, but the cost of them prevents us from buying the "real" thing. Raising a child with multiply disabilities has many hidden costs people would not know or understand from the outside.  We have changed our lifestyle many times for Teale. Giving up things often we thought we would do as a family. We have also done things differently for her sake and the sake of peace. We even changed careers at a pivotal time in our lives. We sent Mark back to college and I quit working altogether to be home for our complicated family. Life with a child who is mentally ill is often about keeping harmony. If something costs more, but for the sake of the family it is worth it, we will do it. These are not extravagant things I am talking about. We do not live on credit. But little things all add up. Our taking two cars to our son's soccer games, in case one of us has to leave with Teale, is a good small example. Teale's need to drive to calm also equals wasted gas. Like I said it's the little things that add up. Anyway, the catalogues to Teale are like a constant wish list. She goes through them asking in Teale language "Maybe for my Birthday?" We always say "Maybe?" Pretty much knowing unless we suddenly come into unfound money, maybe is really a very far off hope. So when I get contacted by an old high school acquaintance asking if she could send Teale a gift from the American Girl store, I am thrown as to how to handle it. She had seen my post on Facebook requesting a catalogue and happened to be visiting the store with her daughter. She said it felt like God talking to her to contact me. We were not close in high school, but she had followed much of my journey on Facebook and through this blog. Teale doesn't own a doll and although the clothes can be purchased for a modest cost, the dolls can not and they are what Teale yearns for. I hesitate as to how to say a gracious no thank you. At some point on this journey with Teale, I had learned when people want to help, you are giving them a gift as well as yourself a gift by accepting. There were times I was too independent, trying to stay too strong in my pain to let others in. Then there was this epiphany. I'm not sure how or when it happened, but I finally realized we were going to need a village to raise this child. I was not gaining anything by being stubborn and strong. I realized maybe this was God's gift in this life. He could not prevent her brain injury and the suffering we all experienced, but He could give us the gift of love along the way.

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