The past week has been exceptionally hard. And considering things were hard to begin with, that says a lot.

I’ve always been one to look ahead and have a plan or two, set goals and do what I needed to do in order to see them fulfilled. Practical and self-directed in that way, some would say. At the present time, that core part of who I am is wrestling with the reality that there is so much left unanswered about what will unfold in the next number of weeks and months, that it is causing me untold internal stress. In other words, lack of sleep or, when I do sleep, it’s filled with panicked dreams, and when I’m awake I am exhausted and having anxiety attacks.

In short, this is an incredibly difficult time. Here’s why:

I want answers I simply can’t seem to get. And, I want answers to questions that simply cannot be answered because life just has to unfold and be revealed – the present path Brendan Bjorn is on in particular.

So, I try to plan around what, in part, actually can’t be planned. Then I try to plan around what could be planned, but because of lack of services and answers around his care, I can’t do that either. Enter the exhausted, anxiety-filled state I’m in.

Fact: Brendan Bjorn isn’t getting enough fluids since his formula feed was decreased a few days ago. Unless the new gut motility medication begins working and I can increase his feed again, it would mean he needs IV fluids.

Questions: That fact then brings the questions of where and how that would happen? And when? Would it be a permanent care facility as we’ve discussed for when he turns 18 or is this going to be occasionally topping up his fluid levels somewhere and then he comes home? What of the extended residential respite to give me rest and him to receive 24/7 care as his needs have greatly increased with the nigh time vomiting and choking episodes? Will that happen or will he be left at risk at night with his increased medical concerns? No answers. No answers to any of it.

More questions. Is he moving on his journey into a palliative/hospice level of care now? This is a question which is in the process of being assessed, but as it’s Christmas and as we’ve been waiting over a year for a GI (gastrointestinal) consult, who knows when that will happen. And again, I lose hope. And again, more questions. If he is in rapid decline, how will that transition occur and where and when and…and…and…so many questions. Remember, I like to have plans.

Then there are the practical questions roaming without check in my head.

When/if Brendan Bjorn permanently leaves my care and our home – for whatever above reason – I will lose the vast majority of financial supports coming into our home. Then what? How will Declan and I stay afloat? I’m 56 and in chronic pain and waiting on various consultation appointments myself. How could I work full time, and who would even hire me at this point? My professional career is a long lost cause. What would and could I do? Yes, more unanswered questions.

Christmas, one of my favourite times of the year, is in less than a week. I have one beautiful son who is beyond excited and even at 13 sits at the Christmas tree, looking at the presents, and is filled with joy. I have another beautiful son who is struggling to survive, the quality of his life being slowly taken from him. And here’s me. I’m in the middle, trying to plan and trying to take life day by day.

I look up at the sitting room wall covered in family photos as I write this piece. For those two beautiful boys, that’s what this is all about and why I worry about so much left unanswered.