The siblings of a disabled child, especially one with such complex medical needs as Brendan Bjorn, often get overlooked. My youngest son, Declan, is no exception. Tomorrow, on May 23rd, Declan turns 11 years old. I will do my best to make it a very special day for him, but with the restrictions centred around Brendan Bjorn, it limits us greatly.
Last night, Declan came up to me while I was in the kitchen. “I bet you’re going to surprise me for my birthday and we’ll go somewhere!” My heart sank. No, Declan, you know Brendan can’t get in his wheelchair. “I know but I bet you’ve got someone coming in so we can go to the cinema or something like that, don’t you?” He had a huge smile on his face. It was all I could do not to cry.
“I’m sorry pet, but I don’t. I’m sorry. I hope you understand that if I could, I would absolutely take you out for your birthday.”
His smile vanished. “I know you would, Ma. I was just thinking maybe. That’s ok.”
And my heart broke a little bit more, as I’m sure his did, too.
This morning, I was on the phone with his teacher about another matter. I asked the teacher if, considering it was Declan’s birthday tomorrow, could he stay home as he’s asked me if he could. The reply was a firm no. That isn’t done. So, when Declan gets home from school today, I will have to tell him that news. I expect upset tonight and a battle tomorrow morning as I try to send him out the door on his birthday for school.
We have been housebound for the better part of 2 years now.
Other than the 15 nights per year provided by LauraLynn,
we haven’t had any in-home respite since June 2017.
Brendan Bjorn hasn’t been fit to go to school the past 2 years, either.
And since his spinal fusion 8 October 2018, he hasn’t had the required custom made wheelchair seating, leaving us all unable to even get out for a walk, let alone drive anywhere.
And in these past 2 years, it is Declan who is often the one that service providers seem to ignore the most. Yet, he is the one who suffers the most.
I am so damn angry that nothing is done to intervene and relieve this situation! There is no home help. No nurses. There is still Loco Parentis, even when/if funding for in-home nursing respite for Brendan Bjorn gets approved, which will restrict me from leaving the home to take Declan anywhere.
My heart aches for Brendan Bjorn and all he goes through, but what I don’t often write about is how my heart is absolutely shattered into tiny pieces at what Declan has to go through. He is such a loving, wonderful young boy and he deserves all the beautiful things that the world has to offer. But he can’t reach them if he’s housebound. I hope someday he understands just how sorry I am at all he’s had to sacrifice. It isn’t right. It isn’t fair.
I’m so sorry, Declan. I’m trying to make it better for you.