A Glimpse Into A Day In Our Life

With some minor edits here is what I (daddy) just posted over on facebook. Although it is not the normal style for how we write here on the blog, after writing it there I figured it would work. Mommy has not reviewed this so I hope I'm not in too much trouble when she reads it here tomorrow.

Overall it was a pretty good day w some low lows.

First an update on mommy. You might not know it unless you specifically watch her outside of her home environment or pay close attention to what she does or doesn't do, but the ALS has completely taken her left leg out and pretty much desimated (80-90%) her right leg and left arm. She can still do things with her right arm but that to is quickly diminishing. After the extremeties it will shut off her core body mechanisms including breathing. She already does not have enough diaphram/stomach muscles to cough productively.

We started the day w a shower which takes about 45-60 minutes. She is in a wheelchair designed for the shower and she uses her right hand to control the spray nozzle and do most of the scrubbing. She needs help transfering to and from the shower chair, drying, cleaning up the shower, etc.

We then went to church and had a good morning although very few people were at church. 2 of the 3 people that were signed up to bring meals for the week were not there and the one that was didn't bring or say anything. (One of the two that was gone called this afternoon and is bringing over a meal tomorrow.) As is often the case, people want to help but when it comes time they end up being too busy or just forget. It's understandable and as small as it is, our church family is taxed doing the things for us that they do. We just wish we could get busy enough to forget about everything sometimes!

After church we had a gourmet meal at taco bell and then a short shopping trip to home depot. While at HD mommy needed to use the restroom. Using the toilet outside of the house where her toilet is much higher than normal is usually a big problem. She can get out of her chair and onto the toilet but often has trouble getting back. After about 20 minutes she called me exhausted and in tears. She had been trying and even with her transfer board she couldn't get back to her chair. As I say outside the restroom for a lom time I knew it had been too long and was getting worried. I had to go find a female employee to try and help as the restroom was constantly packed w other women. That employee couldn't help her and finally cleared the restroom so I could get in and help.

After leaving HD we went way across town to a photo studio. Grandma M had been given a gift certificate there and wanted to use it for extended family photographs. We met aunt, uncle, cousin and grandma there and had more than an hour of time. The kids did really well with posing. It was not too bad getting mommy out of her wheelchair and into a regular chair for photos and that was nice. Getting back was a bit more difficult but we managed. Toileting at the studio was again a problem. Although wonderfully private and large, getting her back into her chair was a painful experience for me and bad for her (she was in tears) because she couldn't help me help her - she was just too tired.

After the studio was a family dinner at Olive Garden. Thank you to grandma and to the wonderful person who gave us some gift cards so we could afford to eat out! Then we were home and working to get all the girls to bed. As I lay here alone in my bed I, as I often do, have mixed emotions about the day. I hate just about every part of what we go through every day right now. But at the same time I am SO grateful for and cherish every hour that we have together as a family.

If you've read this far you really must not have much else to do! I don't know if you reading it has helped you at all but I feel a bit better, not for having written it but for it having been written down.