Monday, July 27, 2009

Holding Fast To Our Dreams

This past weekend I spent time with some of our Dreamcatcher families. Dreamcatchers is a state-wide support group for families whose lives have been touched by deafblindness. Formed ten years ago, Dreamcatchers is a 501-3c non-profit organization that relies on grants and donations to exist. We have a board of directors, but they are not paid for their time. All staff time and effort is graciously donated by our families. What that means in these difficult economic times is that our group is almost broke.

Each year in the past, Dreamcatchers has held a family retreat weekend. Bolstered by grants from our state’s deafblind project, our state Department of Education, and our state’s Department for the Blind, we have been able to bring all our families together for a weekend of respite, learning and networking, all at absolutely no cost to the families. In some cases, it is the only ‘vacation’ some of our families get. But we were not able to do that this year.

This year we received no grants from the Department of Education or the state Deafblind Project. And we are waiting to hear if the Department for the Blind will assist. So, we’ve had to change our model of support this year. Instead of a retreat weekend, we are having several day-long events in three areas across the state. Our families never all get together, but at least we are doing something.

Our first of those day-long events was held this past Saturday. It was a wonderful time of fellowship, story telling, advice gathering and celebration. Parents of children with disabilities, especially parents of children with a unique disability such as deafblindness, need a connection to other parents in the same situation. Often it has been the only thing that has kept me going during times of extreme struggle.

We parents need to know that we are not the only ones who celebrate battles won but worry constantly about the war. We need to hear how others have fought insurance companies, school districts, hospitals and other medical practices and restored the rights of their children. We need to know how the everyday struggles are handled, how the sleepless nights turn into exhausting days, and how the smiles on our children’s faces make everything right.

Dreamcatcher families have been doing all this and more for each other for ten years. And even though the economy is kicking us in the behind, we will continue to do it for another ten years and longer. We are watching our children grow into fine adults. We are welcoming new families with young children, and we are rejoicing in the successes of our adult children. And, we are doing it together.

I am grateful for the friends I have made through Dreamcatchers, and grateful that such an organization exists. Here’s hoping and praying that we continue to grow our organization so more families can feel that connectedness.

1 comment:

Erin said...

I'm so glad that you've found the support you desire. It is so important for parents such as yourself to have that extra ounce of support. If you ever need to vent, feel free to e-mail me. I'll try my best to sympathize with your feelings and offer advice from a young adult's perspective. I'm here for you, Deborah!