Feeling Thankful

Hi all,

We hope everyone had a Happy Thanksgiving! We spent the holiday with family and it had a lot of meaning to us this year. Since my illness and hospitalization this year, every event that happens, I can't help but thinking, "I may not have been here for this" because my doctors told me if I had waited to go to the hospital, I truly may not have survived and it hit us hard. Not to be "gloomy" but when you come close to death, it changes your perspective on everything and I am more aware of what is important to me. MOST important is FAMILY! We just really felt more grateful than ever to be together.

Since my last post, Isabella has had choir and band concerts and Nick has had football. We all went through colds/coughs sickness, as it is that time of year and it always seems to make the rounds in our house. We are missing Oreo so much and are considering getting a rescue dog but are taking our time to make sure we are ready. My Mom and Dad adopted the most perfect dog, Benjamin, from Planned Pethood and he is wonderful and now their other dog Johnnie has a buddy to play with! My Dad is on dialysis three days a week at the dialysis center. We all went together (my Mom, sister, brother, and us) to get him an IPad for his birthday this month to use at dialysis as he is there for so many hours per week, to watch movies, listen to music, read, etc. He has already used it and we just gave it to him last week! We also went with him for his birthday as a family to see the Trans-Siberian Orchestra (did I spell that right?). It was really an amazing concert! We loved it. The kids are just busy with school and Nick is getting ready for finals in a few weeks and has lots of papers to type.

Nick types all of his papers with one finger due to his CP. This is what works best for him after YEARS of occupational therapy and we even bought Dragon Naturally Speaking software which didn't work because of Nick's speech impediment due to his CP. We've found it takes him much more time to have us write for him as he dictates. It's frustrating for him. So, this is what he does and we are proud of him because it is VERY time consuming and physically exhausting for him to type papers. It takes up all of his time to complete his college work and we're amazed at his determination!

Still no resolution to the lack of a PCA for school and family still goes with him. Still no progress with social life for Nick but we have not been able to work on these issues with him because of my illness and ongoing recovery which has been slow. We feel really overwhelmed and badly as parents that we can't address these issues more right now and hope to be able to work in these issues with Nick, try to find solutions for him and help this next year. We're still in kind of a "do the bare minimum to get through" mode while I'm recovering and the kids and Greg have to concentrate on school and work. Again, I feel so guilty about this but I know they are glad I'm "still around", so it's just what we have to do for now. I feel like screaming "help!" I mean, we need help to make progress or figure these issues out. I cry myself to sleep over Nick's feeling lonely, etc. many nights a week and worry that we haven't done enough to prepare him for independence or what the future holds for him. I am afraid of what the future holds sometimes, yet I know Nick will do great and as a family, we can help him get to where he wants to be but we just don't have all the answers.......and I feel we've been talking about this, worrying about this, trying everything since Jr. High and he's still experiencing this degree of social isolation and lack of "getting out there". Also, Nick just doesn't put himself out there often because he's said he's gotten hurt so many times, made fun of, rejected, etc., that he doesn't put himself out there as a means of protecting himself. This is an ongoing discussion we have with hi, believe me! Well, I guess we'll have to just keep on "keeping on" and as I continue to get better physically, we hope to be able to get back to addressing some of these issues.

One last new development, bathing has been a problem, unsafe for Nick and us who are unable to lift him, We've had bars and a shower chair for years but we still have lots of slips, falls, bruises. So, we are getting a "walk-in tub" this month because we hope it will be a safer option for Nick and easier for anyone helping him when he needs it and he prefers to be as independent as possible with bathing, but still needs help with shaving, etc. So, the bathroom will be under construction for awhile this coming month but we hope this is a good solution for Nick and he'll be able to have a whirlpool tub which will help with his constant muscle soreness and pain. Nick has said always that the only time he's really not in pain is when he's in the water, so he may be able to "soak" his muscles in this tub instead of using a shower chair where he gets cold and then his muscles get "rigid and stiff" and painful. We'll see.............................

Also, thanks to everyone who joins us on Facebook, which we can share a little more info. on. We get several other bloggers with CP who share their blog info. on our FB page. So, check it out if you're on Facebook.

Blessings:-)
Amy