Last Sunday, an article was published highlighting Brendan Bjorn’s need for an urgent spinal fusion. For him, it is a matter of life and death. With severe cerebral palsy that has left him with no muscle tone in his trunk, his spine is literally crushing down upon his internal organs. His lungs don’t function as they should and are more prone to infection, especially considering he already has lung disease. His stomach cannot process feeds any more except at an incredibly slow pump rate into his PEG line. His intestines and bladder, all feeling the pressure of a body toppling down upon itself. His bottom ribs are hitting the top of his pelvic bone. His femurs are not sitting in the hip sockets as they should, in fact, the left side is dislocating. And as his body twists and compresses, he loses weight with the inability to take in the nutrition he needs and pressure sores have been a result of the weight loss and changing body alignment.
Like I said, it is a matter of life and death. The operation must happen urgently.
As of this writing, he still isn’t on the scoliosis surgery wait list. The consultant needs to sign a form is what I am told. Yes, he will be backdated to the time of the appointment with the consultant (June 2nd), but until he is on the waitlist, I don’t know how long of a wait we are looking at…and how much of a fight I must prepare for in order to make it happen as soon as possible.
My two sons are my life.
Even though most mornings I wake up and don’t want to get out of bed (that is the harsh truth of life at the moment), I get up because I must. I get up because these boys need me to fight for them. I get up because these boys are both struggling in their own unique ways, and by God, I will do what I must to assure their individual lives are the best they can be. I don’t mean materially. I’m talking about quality of life – health (both physical and mental); security in having a safe, suitable home long term; having the support of friends, community, and schools to encourage and nurture their individual growth.
I have recently decided to return to Kilkenny. I’ve missed it. Declan has missed it. And Brendan has a fabulous special school that is excited to have him return. As such, our fruitless search for a rental home in this impossible private housing market has now shifted from North Kildare to Kilkenny. After 15 months in Kildare, we are happily going back to Kilkenny.
Today I will be doing a radio interview with the local Carlow-Kilkenny radio station regarding our search for a suitable rental home. I hope it will result in our finding a secure, disability suitable, long term home. Brendan Bjorn so desperately needs it. Declan so desperately needs it, too, as he has a weight on his shoulders that most adults cannot even comprehend. I need it, too, because the thought of pending homelessness fills my mind constantly, and that affects my ability to fight to put out all the other fires in front of me on this ever challenging journey.
Here’s hoping this week brings good news on housing, on the surgery wait list, and on our overall security. I have to believe that good will always triumph over all that is bad.
One thought on “Why I get out of bed. Why I fight.”
A powerful and emotional read Tracy.I pray you find a home soon for you and your boys. It’s disgraceful that in this age you are left in this position. You fight on a daily basis for your boys but who looks out for and supports you?. I have lived in both Carlow and Kilkenny and they are a lovely community. Hopefully after your radio interview someone will be able to help you. Look after yourself. X