For a long while I have wanted to be connected with a support group of parents with kids who have special needs. I have been reluctant to join a group becuase previously I hadn't known exactly where we could fit in. ADHD wasn't exactly right, autism wasn't a good fit either even though that is probably what we're most similiar to. And, I am also always trying to find things to help Calvin - lessons, therapy, friends, activities, etc. that will help him feel positivie and a part of things in a good way.
I was recently given the idea from a friend to contact the Epilepsy Foundation of San Diego. When I contacted them a wonderful woman called to talk to me about Calvin. I was very impressed with her kindness, knowledge and helpfulness. She knew exactly what kind of epilepsy Calvin had and where in the brain it was located based on my discription of his seizures and behavior. It was such a relief to have someone completely understand my life. She gave me a few tips about how to change our medication to try and come to a level of more stability and let us to the appropriate group in the epilepsy foundation that could provide additional support.
The Epilepsy Foundation has an amazing program for families who have children with epilepsy. The one that fits us best is a once a month meeting for children with epilepsy and siblings and parents in part of the Expressive Arts Program. The meeting includes dinner followed by Expressive Arts Thearapy for the children (epilepsy kids and siblings of all ages) in one room while the adults meet in another room to discuss issues pertaining to life with epilepsy. It is such a great set-up since everyone in the family is involved and the kids are super thrilled with the art program.
The adult discussion is largely un-structured. Thre is a moderator for the disussion (a parent of a child who is now 14 years old) and it sounds like sometimes there are guest speakers as well, but it is a chance for paretns to ask questions and talk about medicaion, school, behavior, seizures, doctors, etc. with other families who are in the same boat. What is the boat? The boat is so much more than epilepsy. It is feeling panic, desperation, helpless and hopeless at times. It is not knowing where to go and what to do next to help your child. It is wondering what the future will bring. It is wondering how to pay for all the help you need and first wondering where to find that help. Even though every case is different and every family has a unique situation, we are all working hard to find the best path for our child and hoping for a good outcome.
Last night I went to a beautiful concert at Symphony Hall. The guest singer was Brian Stokes Mitchell, acclaimed baritone. My favorite part of the concert was his closer, The Impossible Dream. Here is a recording of him singing as a guest singer with the Mormon Tabernacle Choir. The lyrics are below.
As I listened to this song, I thought of this journey as a parent of a special needs child. In many ways it is living the impossible dream. All parents dream of having happy, healthy children, even parents who have sick or handicapped kids. As a parent I don't think we can help dreaming of the best even when it isn't possible. We fight, we love, we try, we reach for the stars and we are "willing to march into Hell for Heavenly cause." What cause is greater than parenting? I love the ending ... "And I know if I'll only be true to this glorious quest that my heart will lie peaceful and calm when I'm laid to my rest."
Lyrics to The Impossible Dream
To dream ... the impossible dream ...
To fight ... the unbeatable foe ...
To bear ... with unbearable sorrow ...
To run ... where the brave dare not go ...
To right ... the unrightable wrong ...
To love ... pure and chaste from afar ...
To try ... when your arms are too weary ...
To reach ... the unreachable star ...
This is my quest, to follow that star ...
No matter how hopeless, no matter how far ...
To fight for the right, without question or pause ...
To be willing to march into Hell, for a Heavenly cause ...
And I know if I'll only be true, to this glorious quest,
That my heart will lie peaceful and calm,
when I'm laid to my rest ...
And the world will be better for this:
That one man, scorned and covered with scars,
Still strove, with his last ounce of courage,
To reach ... the unreachable star ...
