I finally took our Christmas tree down today, later then I think I’ve ever left it. But alas, it is down and the empty spot is quite noticeable on the sitting room floor. If I look up from that empty spot, though, I see what keeps me going. I see my centre. I see my family. Photos from the past 18 years cover the one sitting room wall.
Photos of good times only.
The photos of the bad times are emblazoned in the ever-saving “cloud” of my mind.
While I took the Christmas tree down, I was stopped twice by the sounds of Brendan Bjorn gagging, retching and eventually vomiting. (remember I wrote last year that this year I would describe the real and raw aspects of our journey?) He started on a new medication a few days ago to try and help his intestinal system work better and allow me to try and increase his feed volume and rate per hour.
This isn’t going to work.
The medication is making him worse.
I spoke to a paediatrician last week. This was the last medication attempt to see if it is a gut motility issue. We didn’t think it was. And now, I definitely don’t think it is. It looks like it is a gut absorption issue, and with that likely inevitable diagnosis comes a huge discussion to be had with his medical and disability care service team: What are the options now?
And once I have those options in front of me, with all the relevant facts, I will go away and contemplate everything...and I will then decide what to do, or not to do, as the case may turn out to be.
So you see, dear reader, it weighs immeasurably heavy on my mind, my soul, my heart, that this year as I take down our Christmas tree, may have been Brendan Bjorn’s last Christmas with us. Yes, I know it may not be, either, and I’ve wondered this same question the past few years. But this year, it feels different. It feels very different indeed. And despite the self-protective numbness guarding my emotions as of late, I can still sense the devastating heartbreak waiting for that guard to drop its precarious defences.
I think I’ll add a few more photos to the sitting room wall this week.
I have followed you since the days we shares about our children’s experiences with bus safety. I know how hard you work to give Brendan the best life possible. I also hear the pain when you write. đź’” I think of you often and hold you in my prayers.
Hopefully things will get better in the new year, and as they say (the darkest hour is before the dawn)
Keep–Strong.
Some sad thoughts here, many of which I experienced as my son Ronan grew increasingly unwell. The only real answer is to take one day at a time and hope for the best, while doing what you can to sustain some kind of quality of life for Brendan.
Please remember each day you are being such an amazing mother to Brendan.