Often times, people tend to forget that stuck inside this house with me while I care 24/7 for Brendan Bjorn is a vibrant, amazing, and sensitive 9-year old boy. My youngest son, Declan Dale, is trapped inside along with me, unable to even go for a walk. He’s been home for 9 days now on break from school and we have done NOTHING.
Let that sink in: We haven’t been able to go ANYWHERE for 9 days while he’s been on break. Did you get out of your house in the last 9 days?
If as an adult I am screaming inside of my head at being housebound, I can only imagine the turmoil he is going through inside of his own mind as a young boy.
No one came to visit.
No one rang to chat to him.
No one invited him anywhere.
So, we row, as any two people would do trapped in a house for 9 days together, no matter how deeply they love each other. As such, our relationship suffers…and it musn’t. We are all we have – each other.
Brendan’s disability team social worker came this week, so I correct my above statement about no visitors. But really, does that count? No, not really. She came to chat with Declan, to see how he is settling in, because I told the team he isn’t settling in well at all.
My little boy, Declan, is changing because of everything revolving around his big brother, Brendan Bjorn. Yes, yes, it in part is making him stronger, more compassionate and all the rest. BUT…it is also stifling his growth as a boy. His potential – physically, socially, emotionally, intellectually – is not being met because of being housebound. Today is day 116 that Brendan Bjorn has been bedridden.
My heart is breaking for Declan. My sweet, sweet boy.
I need in-home respite desperately so I can take him hiking, shopping, out to eat, anywhere…just OUT! We have a nurse coming next week to do an assessment. I still don’t know how many hours per month the HSE will approve because Brendan requires 2 people together to provide respite for him – a nurse and an aide. So, we wait…again, still, always waiting.
Tomorrow, I wait for a call from Crumlin to see if there will be a bed for Brendan to get a sleep study done. If there is, I’ll need to pull Declan out of school and run down to Dublin with the boys, where we will stay overnight. Declan will miss school on Tuesday as well because other tests on Brendan will be run. These include a sedated MRI schedule for 4:30pm – that is, if the department can get to Brendan. So, Declan will wait, again, in the hospital all day, doing nothing, missing school, his potential being stifled. We won’t get home until late Tuesday evening, which will mean Declan will go to school Wednesday morning exhausted.
Declan has 2 weeks off of school for Easter break coming up. Instead of being able to plan something fun with him, we wait to see if I will even get a few hours of respite within those 2 weeks so I can get out of this house with him. We wait to see if Brendan’s pressure sore will finally be healed so that he can get out of the house, too.
God knows I wrestle daily at how I have failed Declan. He deserves the security of a forever family home. I can’t buy one. He deserves to join Scouts, a soccer team, have a garden where he can run and play. He deserves so very, very much! I wish I could give him all that he so rightly deserves – a childhood of security, peace, comfort, and stability. He has enough to be worrying about having a brother he knows has a life-limiting illness. He shouldn’t have all these other worries as well.
My sweet, sweet boy, Declan.