10/13/2026
I've been needing to update! Jackson has been home 5 days now. He is doing pretty well. He is moving slower than I had imagined and taking it easy. He is just a few weeks out from his last surgery so he is still on that recovery as well as the big change of being home without all the round the clock care.
Bath and dressing change is still taking over 2 hours a day. Most days it is 3 hours. Today there was improvement so Im hopeful for tomorrow.
That's a lot to add into anyone's day.
There is definitely a noticeable difference in his energy and mood when he is up and about too much.
A friend posted this picture today and I think it helped me to just see the vast amount of change and challenges we have had in one year. I spend a lot of time zoomed in on the thing in front of me at any given time. Since we have been home there have been moments where the world zooms back out and to be honest I struggle!
When I saw this picture and paused to consider everything that God has brought us through in 12 months it kind of takes my breath.
My mom passed away October 2nd. The next week was her funeral and the next was my birthday and Jacob and Brittanys wedding celebration. We had one week where I was home and thought I would begin to sit with the grief of losing my mom and Dave fell for the first time.
That fall began a series of appointments to "be safe" and "make sure everything was ok" and instead each appointment uncovered just another little piece of something being off.
It was within a month that we first heard ALS. This was just before Thanksgiving, my first without parents. It felt like I was moving around in a world that was not mine. I still looked like me and everyone around me was still there but I was just not myself any longer. We did this through Christmas and into Spring. Lots and lots of tests. Tests to confirm the previous test. Weekly calls to see if we could get downtown any faster than the 4 month wait they first gave us. Our local neuro had written on a prescription pad. Diagnosis ALS, referral to a Chicago hospital. He handed it to us and said it was "too rare" of a disease to get care here.
Somewhere in those months after Christmas our kids had had enough of our vague answers for what they could see happening with their own eyes. We finally told them Dave was confirmed to have a "motor neuron disease" expecting them to maybe settle having some type of answer, but Addyson shot back "motor neuron like ALS?" and then they fully knew. There had been enough people bringing awareness for ALS that they were somewhat familiar via tik tok and youtube.
I have said it here before, but the first thing doctors and support groups told us was "travel".
We vacationed the heck out of this summer. We really thought we were making memories for the kids with Dave. I really believe now we were being filled and fueled to survive August through October!!
We dont know whats around the corner, none of us do, but this year we have learned to do each day the best way we can. They aren't all good ones, but they can be done well with God's help.
We are still settling into home and everyone's needs being met well, but it is so so good to all be in one place. God is meeting every need for each day and focusing there is all we need.
