What does it take to survive? The answer of course varies depending on who you are and what your life’s journey entails. For my 12 year old son, Brendan Bjorn, the answer is, shall I say, complicated. His life is totally dependent upon someone caring for his every need on a 24/7 basis. When I say his every need, I mean just that: EVERY. SINGLE. NEED. And that someone who takes care of those needs is, in fact, me. I am his full-time carer.
THIS IS WHAT IT TAKES FOR MY SON TO SURVIVE:
Every day, and each night, I lift his 34 kilos (74 pounds) of dead weight to move him where he needs to go – his bath chair, his wheelchair, his bed. I carefully dress him and undress him. I change his adult sized, frequently overflowing, nappy multiple times a day. I administer the medications that keep him alive – 3 seizure medications twice daily, 1 liver medication twice daily, 1 reflux medication twice daily, 2 puffs of steroid inhaler twice daily, 1 constipation medication at night, a prophylactic dose of antibiotic 3 times a week, and 1 round of Dioralyte fluid to keep him hydrated, given at night. And of course, there is the emergency rescue medication for seizures that go to the 3 minute mark, as well as oxygen for when he stops breathing in a seizure. I set up his daily feeding regime of formula given via a pump hooked up to a G-button peg surgically placed in his abdomen to be given at a certain rate over a certain time frame, and closely monitored because he is growing less tolerant of feeds, so I must be ready to shut it off at a moment’s notice if he starts to gag. I am his arms and hands – he cannot hold anything in his soft, but now contractured, hands. I am his legs – not only can’t he walk, but he can’t move his legs in bed should they get out of position on his specially designed cushion meant to hold them in place. I am his neck – he can’t hold his head up for more than 30 seconds at this point, so if I want him to look up to see something and he is unable, I must gently lift his head up for him with my hands. I am his voice – the non-verbal child with more complex needs than most any adult will ever have – I am his voice against a system that doesn’t want to know about him or his struggles, fighting wait lists and denials and doctors and therapists and special education personnel and…and it is never ending…but I am his tireless, advocating, voice.
I am his nurse, his pharmacist, his doctor, his therapist, his case manager, his personal assistant, his teacher, his advocate, his body, his voice, his everything. And, I am his mother. His everloving, totally devoted mother.
THAT IS WHAT IT TAKES FOR MY SON TO SURVIVE.
Yes, I am his everything. And somewhere along the way, in order to be his everything, I have lost much of who I was. Tracy. Even as I type my own name, it feels as if I am referring to someone outside of myself. Tracy? Who is she?
And with that question, it leaves me to wonder if I know what it takes for ME to survive.
I survive on scraps of time sprinkled here and there during the week when I actually find a bit of alone time to compose my thoughts, to breathe, and to just be. I survive on the incredible love I so thankfully share with my 2 beautiful sons. They are indeed what sustains me, like the medicines that so vitally sustain my Brendan Bjorn. I survive on hope for a better future, in some undoubtedly unrealistic, magical way, that things will get better for us, that it won’t always be such an relentless struggle. I survive on very little sleep, on not enough money to pay bills, and on too much sugar, caffeine, antidepressants and ibuprofen. I survive despite the exhaustion, the loss of my career, my house, my financial safety net of retirement, adult conversation, and the loss of so many of my dreams.
I survive, but most often, it is JUST BARELY.
I exist. That shadow of my former self. And at times, I let my mind wander into the future and contemplate what will become of me (and my other son, Declan) when my precious Brendan Bjorn gains his angel wings. What will I do? This shadow of my former self, far too many years out of my career to have remained marketable; No savings or retirement to keep me and Declan secure because what we survive on financially amounts to FAR less than minimum wage for 24/7 work; A broken, aging body after years of such demanding physical care and now facing chronic health concerns of my own; And a shattered heart I will surely have, as well.
HOW WILL WE SURVIVE THEN, WHEN THE CARING IS NO MORE?