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Today, Ryan and I worked on a letter asking for additional support/resources for raising our daughter. We got to this point after several years of seeing that some/many of our resources are being drained with taking care of her special needs of Aspergers and ADHD. We love her, love being her family, but need some additional supports to help meet her needs.
After compiling this letter, I was hit by complete sadness and brokenness. To see what it takes to meet her needs written in all one place, was exhausting and heavy. We listed the weekly therapy appointments, child and family meetings, psychiatry assessments, medication monitoring appointments, TUSD assessments and meetings to get the school next year to be ready to provide for her social/educational needs during their hours, and Sensory Integration therapy that she needs but has yet to receive because of insurance issues and an issue of where do we add one more thing in our week. Then we had to list what she still will need in the years to come... social skills training classes and social skills camps that specialize in helping Autistic children like her; these cost hundreds of dollars for classes that are a few weeks long.
Then tonight, we had to be vulnerable and ask many people to help with the kids tomorrow night so that we can serve the Village at a monthly meeting. And I know you all have your own lives and we are not blaming anyone, but it is so lonely to know that we couldn't find anyone to relieve us for for the 2 1/2 hour meeting. This is awkward to share...Eric said life together is awkward and I am sad. I cried and cried today as the heaviness of the life that God desired for us to lead, raising these kids that take so much from us, who make community tricky, but whom we love so much and wouldn't trade them for anyone else's children.
However, I am thankful for Tamaki, who will come relieve Ryan so he can come to the 2nd hour of the meeting. I am thankful for my co-worker who attempted to sit for the kids again Friday so we could come to the drumming circle, even if I had to rush home to help her enforce bedtime. We are thankful for the once a month dates we get on Sunday mornings from Careena and Raymond; this is way more than we had for years and we know you love our kids, which means so much to us.
I want to hang on to these little bright spots to believe we are not alone in raising our kids. I want to remember them to combat the hopelessness that I often feel when I get yet another report from school that tells us how she didn't care about how another child felt when she was physically aggressive to them, hoarded all the toys, spit on the other kids food or their person, or otherwise didn't think they were more important that what unkind thought went through her head. These bright spots, I hope, will get me through to the next time she thinks of doing a kind act of service for you at church, makes you a present at home, or otherwise says she wants to tell you she loves you. We need that kind of hope...the day and day out gets long and the bright spots get so distant that they look like mirages sometimes. But, they are there.
Please pray for our family, for Ellen, for friends who don't give up on Ellen, for her brother to keep forgiving her and loving her, and for us to keep teaching and loving her even when it seems like the hope is gone. |
