I didn’t get to become a mother until two months before my 39th birthday. On the day Brendan Bjorn was born, I knew my world had changed forever. No, I didn’t have any idea he had severe brain damage and would take me on this journey of life with a profoundly disabled child. The doctors didn’t know, either. All of that would cruelly unfold in the weeks to follow. But on that day, that blessed day, I finally – after four miscarriages – got to hold a child of my own in my arms. There he was.
I sit here now, 17 and a half years later, watching his tired body slowly give up its heroic fight to stay with me for as long as possible. There is nothing more I can do to stop his fragile body from failing his indomitable spirit. Everything has been tried. The last ditch effort of a new medication started last week didn’t help, and in fact, he had adverse reactions to it. So today, I stopped the medication after speaking to the GP. She agreed.
There is nothing more I can do.
Those words have be ringing in my head all day today. I’ve lost my breath at times when I think about what they really mean. Panic has set in. Thoughts racing of what I want to do with my beautiful son while I still can. What would he like. What would Declan want. What, how, when, and why…oh why, I cry.
No answer comes, of course.
Strange, random thoughts come to mind. Fingerprints. Get his finger or toe prints so you can have one of those memorial necklaces made. I tried. Ink everywhere. I discovered he doesn’t have very pronounced fingerprints and I’m not sure what I got will work. Then I sat down, bawling my eyes out, realising that not only may I not be able to have that memorial keepsake become a reality, but also for the simple fact that I even thought of it.
I’m exhausted physically, spiritually, emotionally, mentally.
On that note, last week, one of the managers on his disability team actually suggested I send Brendan Bjorn into school this week so I can “get a few hours of respite.” I have thought a lot today about that callous, ignorant suggestion as I listen to my son cough, gag, moan, unable to tolerate his PEG formula feed and now just on Dioralyte, which even that is causing difficulties for him. Even I, in my exhausted state, can see how that suggestion screams out just how little support and understanding there has been, and even now in this palliative time continues to be.
So here I sit, pondering the days to come.
I want to turn the clock back and have more time with him.
I want to be able to hold him in my arms like I did when he was little.
I want to go to bed not terrified he’ll be gone when I wake up.
I want to somehow magically make all of this not happen as it is bound to do.
And I want to shelter my youngest son from what he’s about to go through in losing his only sibling.
My heart is heavier today than I think it has ever been. I now know that this is what it feels like when there is no more hope. There will be no healing; no coming back from this struggle. This is Brendan Bjorn’s final struggle.
I can now only hope that I have been worthy of him all of these years, and will be so in the days ahead.
Brendan Bjorn in his bedroom, watching his favourite film