Thursday brings a break in the storms but it will only last until this afternoon. Hopefully it will hold off until we get Maggie back from her doctor appointment this afternoon. She's not sick, it's maintenance. We have reached some sort of magical place of equilibrium in her health and I will do whatever it takes to keep her there. Think of it as a tune up. Today it's the GI doctor and I have to make an appointment with the pulmonologist and a few other specialists too.
Maggie's run of good health has me contemplating activities that I generally would never consider. For example, last night I went to an informational meeting at the Jewish Community Center about a Special Needs Family Camp that is sponsored by Jewish Learning Works. The camp is held for one weekend in May and it sounds fantastic, 48 hours of fun for both the kids and their families. The kids with special needs have so much support and activities, and there's something for kids of every ability. There are activities for the siblings and parents together with and apart from each other and from their special needs sibling/child. Parents find support in one another and can relax and enjoy their family time without anyone judging the peccadilloes of these special needs children. My friend Jennifer goes with her teenage daughter and loves it. In fact I learned about the Camp from a video she posted of her daughter Rae telling jokes at the talent show at Camp.
It is, of course, designed for Jewish families with a ton of Shabbat and other services built in. We are not Jewish, but I have always loved Judaism and its services and traditions. In fact my friend Melissa often asks me "Are you sure you're not Jewish?" I already knew from Jennifer that gentiles are certainly welcome and I clarified and felt that last night. I told them people at the meeting last night that my daughter Mary Margaret McDonald has a very ethnic name, but it's not the same ethnicity as theirs.
As with everything, this camp is not really designed to meet Maggie's needs. They have "shmira" where the kids are basically babysat in the cabins at night so the parents can get together for wine and community. A big part of the effectiveness of this camp is meeting other families, and I would want to take part in that. But Maggie needs more than custodial care. There are other times that the kids are doing an activity while parents do another. In response to my question, they said you are never apart for more than 30 minutes at a time. I smiled and said I can't be away from her for more than a minute. There are plenty of staff for the kids, but Maggie needs a nurse or at least someone comfortable enough to suction her every 30 seconds. It's too much to ask that they have someone trained or comfortable enough to do that. I am welcome to bring someone along who can care for Maggie.
As I left the meeting, I was tempted to give it a try. There is just nothing recreational for Maggie. This could be fun and we can hang out with Jennifer and Rae. The people at the meeting were great and encouraging. Clearly Maggie would be welcome with open arms.
Then I came home and wondered how I would handle all the equipment. I would have to bring all her meds, the oxygen, the nebulizer, the suction etc etc.etc. In addition, I would have to be the nurse both nights and sleep would be fleeting. I don't want to bring a nurse with us because I want Maggie to be able to get in there and mix it up.
I have to think about it.
I wish having fun wasn't so difficult.
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If you are interested in learning more about this camp go to www.jewishlearningworks.com. The camp director is Cheryl Cohen.
Here in St Louis, we have an organisation called DASA it's the Disables Sports Athletes Association. They run sporting activities for children (and adults) with all levels of special needs. Every summer they offer Camp WeCanDu. It's 5 days (and nights, if you want) of summer camp for these kids. Swimming, hiking, fishing, campfires, Theraputic Horsemanship... the whole thing. The staff are often PT's or nurses, and the counselors are mostly teenagers. The camper/counselor ratio is less than 2:1.
ReplyDeleteLast summer, I sent theboys. If you remember, the twins both have CP, but they are not as severe as Maggie, but there were other campers who were. My boys managed to stay the entire week, over night and everything. It was a great experience for them. Despite the tears and nerves the first day, by the time I went to pick them up, they were asking to go back again next summer.
If yo can find a way to make it happen, you should do it. You are right, having fun shouldn't be this hard, but fun like this would be so very worth it... for all of you!
I've looked into weekend camps and summer week-longs for Sophie, and although her needs are nearly as strenuous as Maggie's, it seems impossible, particularly the night time coverage. There's a camp down here at Lake Arrowhead, called Camp Pavlaika that has sounded interesting, but it terrifies me to think of Sophie and her seizures and the nights.
ReplyDeleteI wish we could do this together with our girls!