SO many lessons learned, one of which is in the last month and the last week that Madison spent on planet earth. Observations and a conversation with Jan RN Madison's nurse, is forthcoming. Their bond was so incredibly beautiful; one example of many: There's a special medical supply that isn't available at any pharmacies. Jan RN was checking in with us to see if we're okay. We were down to one of these special bandages and out of the blue on Christmas eve at 11:45 PM there's Jan in her pajama bottoms and a down jacket: bandages for Madison and a hug for dad. Later the next week Jan was sitting on Madison's bed and both were looking at tattoos on the web. A couple of days later Jan RN sent Madison a picture of her arm and Madison showed dad. Wow, she did it. On Jan's wrist is a bracelet that has a lotus flower on it... Madison had given that to her. Something tells me neither one is coming off.
Friends and family who love us (who we love deeply) may be struggling some and wondering how her moms and dad are doing. Honestly with the disclaimer 'all thing considered', we're doing fairly okay. I think my grieving actually started in September, and that was also a month of celebration. I think Madison's started mourning then too. When she had the last CT done in early December... even more advanced progression along her spine, more reality in the Faith, Hope, and Reality equation. As Madison's therapist Tricia taught her "acceptance is not approval". That lesson/gift was of enormous value to Madison... to me too. This is not okay on so many levels... it just is. Through Madison's mourning and acceptance phases, she really did seem to mourn and then accept things as they continued to be taken away. Less than a week after losing the loss of her legs, she was at the It's just my legs stubborn determination phase.
We invite you to stick around here and follow Madison's legacy by bookmarking this site and checking in. We don't plan on updating Facebook regularly since that's last-in last on-top and 'likes' drive that timeline. Here we have a forum that isn't driven by social media algorithms. As the what's-next becomes better focused and we redefine our roles on planet earth carrying Madison's torch, you're welcome to tag along here.
The Jones family