I would think your kids would get more from you talking to them than from any book. Every family has it's own 'normal'. Some are more normal than others. But, we deal with the one we've got. My very good friend has CF and 3.5yrs ago had a double lung transplant. Her children were ages 12, 8 at the time. They talked a lot about being hopeful (while she was on the transplant list) and how much better it is to be positive. She talked about how that hope for a new chance was a big part of helping her make it through each day.
Her children did receive counseling (for about 2yrs) b/c it was difficult for them to watch their mother's health deteriorate prior to her transplant. There was a lot they felt they couldn't talk about w/ mom/dad and was good for them to have a nonbiased person to share their feelings. In addition, they have all these great tools to better help them deal with normal teen stuff and they've even stated how much it helped them.
I'm very sorry it is all such a trial. I have my own chronic health conditions but it's been very helpful having my husband come along to my appts. It helps him see that my symptoms are in fact part of a medically diagnosed disease and not that I'm 'lazy' or whatever. Perhaps this would help you (if he was willing). Also, he can remember stuff I miss. It's always nice to have an extra set of ears, particularly when visiting specialists.
That bolded part...HUGE. I've been more and more "lazy" over the years and DH wants a rather clean home...it's a standard that's difficult to reach even totally well. He does help some, and my kids help a lot.
10yo did 7 loads of laundry start to finish in 2 days. The 8 &10yo unload/reload the dishwasher, three biggest have table jobs after meals, 2yo JUST turned 2 and is learning some very small things, but that training is more tiring that just doing it myself, but he does enjoy helping.
We've cut out Sunday evening community group and kids choir during the comm group even though I really need to connections I'd build there and the kids have no other group activities they do besides AWANA. Other than church, we don't really do anything else. Occasionally meet with the homeschool group when we feel like it.
Since I have hypERthyroid, I'm very thin and being that I have an autoimmune issue, my muscle mass is so, so low...So I'm just puny! I'm 31 and a whopping 108lbs. I've had 4-5 miscarriages as well, and I have the cognitive and memory issues as well right now. My anti-thyroid med is starting to work some, but my beta-blocker to control my heartrate until the meds knock out the thyroid hormones are making me so very sleepy and make my BP low.
As sleepy as I am, the thyroid gives me insomnia so I start ambien tonight hopefully (waiting on insurance to approve it!)
HOW in the world do you get school done when you feel like all you want to do is sleep and your body is puny so much at times that your arms are too heavy to hold up, or you feel like one big giant bruise? I know I want them home..in fact, I couldn't do it without the big ones home b/c they help with the two littles who aren't school age yet.
We are praying our landlord will let us out of the lease if we find someone else to rent our home b/c we really need to be closer to town and doctors and sanity savers and DH's parents who could help. We live out in the middle of no where.
You know what to blame the lack of cohesiveness on in this post. LOL Thank you all so much for offering advice and words of encouragement.