Where to begin........

I spent this past week thinking about where to begin with my blog and decided I was "over-thinking it" and that I just needed to begin!

This past week (summer really) has been busy but fun. Nick is volunteering as a camp counselor at The Ability Center for Camp Cricket, which is a day camp for kids with and without disabilities. Nick has been attending as a camper for the past 8 years, with the exception of the summer of 2002 we spent in Canada for Nick's therapy and last summer when Nick had extensive surgery. This year, we decided (he decided) to attend a week long golf camp for teens with disabilities through ACT. ACT has golf carts at a golf course near our home which are adapted for individuals who use wheelchairs / have physical challenges. They have chairs that swing out so you can golf from the chair and hand controls. Nick loved that and loved driving the golf carts independently. (watch out!) If you think about it, golf, for someone with cerebral palsy and gross and fine motor limitations like Nick, is GREAT physical therapy and very difficult. Nick said it is not easy, but it is fun and he loves it. He said is perfecting the "one hand CP (cerebral palsy) swing". He was actually sore one night after golfing. How cool, something fun and good for him at once. Then Nick is volunteering for four weeks (basically the month of July) at ACT/ Camp Cricket as a counselor. He helps out at camp and sometimes helps out at the golf camp too, depending on the day. He loves it and loves hanging out with some of the counselors he has gotten close to over the years. PLUS, Isabella is a camper at Camp Cricket this week and next week! She started attending when she was 6 years old. She loves it! For her, it is a lot of fun and her counselors say she is very "helpful" with the kids who have various disabilities at times. I don't think Isabella even thinks about that, she is loving the activities every day and she thinks it is pretty cool that Nick is there too as a counselor. Isabella also had fun attending a camp at the Humane Society in June with her friend Katie. She and Katie love animals! Next, during the first week of August, Nick is attending an overnight camp with other teens with disabilities (and there will be kids without disabilities at the camp too) with ACT staff to assist Nick with daily care/physical needs in Michigan. This will be the FIRST time Nick has gone to an overnight camp (or any other overnight) with the exception of 6th grade camp during which Greg took vacation time to attend that camp to assist Nick physically. So, it is the first time without one of us. (and he spends the night at family and friends houses on occasion!) To be honest, a friends suggested we send Nick to this camp previously, which I attended for several summers as a kid with my sister and friend. Greg and I were not comfortable with it because we didn't know if they had campers with disabilities and if they would have the assistance that Nick would need physically (to bathe, brush his teeth, dress, go to the restroom, get from place to place, carry things, eat, etc.) Our friends teased us and said we were "babying" Nick. We agree that we probably do at times. We do. The other issue for us was not being sure that Nick would have the assistance he needs and so therefore, his safety. Honestly, Greg's friend accidentally died at this camp in the 1980s when he was working there and a tractor fell over on him. So, all of those factors came into play for us as parents. Now, however, The Ability Center is providing staff to go with Nick for physical assistance, so we decided to go for it! I'd be lying if I said we aren't worried, but we REALLY do want Nick to have the same experiences other kids have and want him to have a great time. So, with a little planning and help from ACT, we are hoping Nick has a great time. Summer 2009 is a busy but fun time for us so far!

Tonight, after camp, Greg took Nick and Bella to the YMCA to swim / for Nick's water therapy (physical therapy in the water!). Nick has said the only time he is not in physical pain is when he is in the water. We try to get him to the Y as much as we can (with our schedules, work, etc.) and we try to continue the exercises we learned for Nick during his rehab last year after his surgery. Our local Y has a pool AND a therapy pool, and we've used both, depending on the availability of the therapy pool. Nick is pretty much in constant pain now. We spoke to his orthopedic surgeon last month. Dr. Munk has been seeing Nick since he was 6 months old for all of his orthopedic issues related to the CP. Dr. Munk said, with Nick's muscle tone and involuntary movements, Nick has to work "three times as hard" as we do to physically do the things that we do all of the time. (get out of bed, hold his head up, sit up straight, ETC.) He said that it is normal, or expected, that with all of this, Nick would feel as if he just ran a marathon, pretty much all of the time. Nick has said this was a good way to explain it. He is always in pain when he is awake, except when he is in warmer water. I knew that, as his mother. I mean, I knew he was in pain all of the time and we've done things to manage it. We don't like him taking meds all of the time, at least ones that interfere with his functioning. (make him too tired during school or the day in general, etc.) For some reason, though, I thought it would "get better" (the pain) so it was hard to hear that news from Dr. Munk. Nick wasn't surprised at all. I was for some reason. We are now more motivated than ever to try to get Nick to the Y as much as possible. We can't afford a pool or therapy pool, so this is our best option. In fact, they just returned from the Y and Nick said he feels "good"! It's all about "managing" the pain and issues related to the CP. That is one thing we've learned over the years. It's not going to go away. There is "no cure" and it doesn't get better. Over time, in fact, some things for Nick have improved, and then different physical complications come up. Nick has an overall GREAT attitude about it all. We kind of approach it as a team effort too. We all know how to help Nick with his stretches, etc. and we try to do as many things as we can as a family, even therapy at times! For us, that is just what families are all about and we wouldn't do it any other way.

I plan to write more later about our summer and also to start writing some of our stories from Nick's early years! One final thing fot now.........a couple of people asked me why I chose to title this blog "CP Family". The answer is simple. I tried to come up with a "creative" name and couldn't. Also, I wanted people searching for info. about having a family member with CP, connecting with others who have a family member with CP, etc., to be able to find the blog. So, I kept it simple. That's it! Thanks for asking and for the input!