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Monday, October 8, 2012

Changes & Blessings, part 7

I decided to just explain to my high school acquaintance that Teale didn't have one of the dolls she so coveted. That we just couldn't afford them and so a gift from American Girl Doll, although a very sweet gesture, just didn't make sense. She wasn't giving up that easily, Michelle said her daughter and her really wanted to do this. Michelle's daughter, Meaghan, had received many gift cards from her Birthday and with their living so close to NYC they often visited the AG store. They wanted to send Teale a doll! My heart jumped at the thought, all I could imagine was Teale's excitement when she opened that package. I was overwhelmed by the generosity, touched by the kindness and quit frankly confused on how to handle this. It just seemed so greedy, so wrong to accept such a large gift from someone I barely knew. At the same time, my heart was filled, I just couldn't believe the kindness in the world. I thought about how I could share this story, how from sharing it, it would touch more lives. The social media had brought us together, we had a second chance at friendship. Michelle was known to be a sweetheart in high school, but I really never had hung with her. She dated a boy for most of high school and I believe that had much baring on who she hung out with. I actually left high school shortly after Christmas break my senior year. I had fulfilled most of my credits to graduate and was just sick of the everyday routine. My guidance counsellor set me up with the local community college to fulfill my final credit and I took that class at night. As luck would have it I also landed a live in Nanny job for that semester, so suddenly my high school career was done. I would still walk at my high school ceremony, graduating with my class, but I never returned to classes at my high school. I was just ready to move on and the opportunity I ended up in as a Nanny are still some of my favorite memories of my lifetime. The family and I really hit it off and I loved living with them. But my decision to leave high school early meant I missed out on the most fun semester of a persons high school career. I have very little regrets, but every once in a while I wonder what I missed. I only bring this up because I may have missed opportunities to become close to people like Michelle had I stayed in high school that last semester. Her reaching out to me and my daughter was a second chance for both of us, something Facebook really deserves a lot of credit for in my life. I have made many connections, found out many people who have children with special needs or not have followed my family, learning along the way. People often reach out to me privately about their families struggles too. The networking of special needs families tends to be tight anyway in a community but because I am so open about our life here and on Facebook, I have connected with many. People often reach out to us in good and bad times, but Michelle's offer was unique. Not because of the dollar amount attached to it, but because of the sincerity it was given in. Michelle knew she could not solve all the struggles Teale and my family went through, but she wanted to give some joy to all of us. I graciously accepted her offer and the package arrived later that week. Many strange "God whispers" happened that week before the package came though. One time I caught Teale on the computer looking at The American Girls websight, she had up a picture of the exact doll Michelle had picked to send Teale. My heart jumped with excitement! Teale said to me once again "Maybe for my Birthday?" as she gazed longingly at the doll on the computer screen. Michelle and I had started texting each other regularly, so I sent her a picture of Teale looking at the doll on the computer. Her response was "It was meant to be." Another day I took the girls to our local library, a regular easy field trip with the two of them. There is a place where a display is set up and changed regularly for the kids. Often it is tied into the seasons of the year or book characters. As luck would have it, it had recently been changed to American Girl dolls! Teale stood staring at the display behind glass, my heart beating a bit faster as I imagined the package on it's way. Again I sent a picture to Michelle, again her response was "Meant to be." Michelle also texting me regulary, sends me updates on where the doll is in the process of shipping. It is an exciting week, as we await the surprise package. I decide to not tell my family to make the packages arrival even more exciting. One day Gwenn comes to me saying there is a big box on the front porch...

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.