I mentioned in passing a few posts ago that one of my children has been diagnosed with a rare and potentially life-threatening medical condition. That is my oldest, who gave me permission to post about this. We know for certain that she has a severe case of Superior Mesenteric Artery Syndrome. What we don’t know is if it was exacerbated by a sudden large weight loss (an almost-16-year-old should not weigh only 70-something pounds), or if it was the cause of the weight loss because the condition makes eating so painful. We also know that that is not all that is going on, and while the doctors have identified some additional issues, they don’t think they have the full picture yet. The past few weeks have been full with meeting with specialists, scans, and various procedures at the hospital.
Not sure why it surprised me how very triggering this has all been. After all, I did spend an awful lot of time in a hospital for seven months and handled it OK. But what Kendall actually died from was an acute bowel blockage, so very similar to some of the issues my daughter is now having. And wow, was it hard being in that hospital room, hearing the sounds of the blood pressure cuff and the various machines beeping, watching the IV be put in, having to wait behind as they wheeled my child in to the OR. It also brought back feelings from when this same child had some serious health issues as a baby and toddler, except this time I don’t have Kendall going through it with me. Thankfully I was given permission, despite the current COVID restrictions, to bring a friend with me to the hospital on Friday. She was able to distract me through the hard parts and listen and take notes so I could later remember everything the doctors said.
So. Not fun. Not recommended. Zero stars. We know some things but are still learning more about the extent of her problems. More testing and scans this week. Hoping to get more answers and a clear treatment plan for moving forward. We are almost certainly looking at long term feeding tubes and most likely surgery (surgeries?). I’m dreading having to re-enter the world of home health again. I know, apparently we don’t believe in down time or taking things nice and slowly in this family.
Saturday marked one month since Kendall’s passing. It feels both incredibly recent and so long ago all at the same time. In honor of the anniversary I went back and rewatched the recording of Kendall’s funeral. Is it funny that some of the words, even (maybe especially?) my own, were things that I needed to hear? Reminders of God’s love for me and for my family, of having an eternal perspective, of still choosing gratitude and faith amidst trials. And the reaffirmation that yes, “I am deeply grieving, but I am no longer afraid.” And I’m not. I don’t want my daughter to be going through these challenges, but I trust that we’re going to be OK. That God is aware of us, and will help us through this too. I do still feel hope, and faith, and trust, and love. And it really is OK that I don’t have all the answers right now.