When My Son Spoke Out to Support His Brother With Epilepsy

My family recently asked our local Council to fund a ceiling track hoist in the living room so my son with cerebral palsy and life-limiting epilepsy could sit on the couch with me, his father, and his two brothers, including 9-year-old J. Our request was declined, so I wrote this letter:

Dear Council Members,

Thank for your email informing me of the “very difficult decision” the panel had to make in declining our request for a ceiling track hoist. The equipment we asked for would have helped us lift our son onto the sofa so we can sit together as a family.

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Thank you for explaining this is “beyond the standard criteria.” I acknowledge your service has limited resources, especially in the current political climate. I too live by a budget. It was very helpful to read your criteria. I note that it focuses on functional independence, essential daily living needs and whether it saves the council money. I also notice that your criteria doesn’t mention comfort, being a brother or son, or creating memories.

I think our criteria for what is “essential” is very different.

It is important that I feed and look after a pet in my care, but it is my duty and privilege to love and nurture my son. I guess because he is blind and can’t walk, you could say he can’t see us all sitting together without him. I suspect, though, that if I willingly and repeatedly excluded either of my other children from “family time,” I would be rightly accused of emotional neglect.

Having a son with complex needs and life-limiting epilepsy has shown me that life isn’t about staying warm and fed. It is about love and relationships. It is about making memories and valuing a person — not what they can do. All the best parts of life can’t be touched, seen or quantified; they are felt. I don’t want to complain about life being hard because I don’t ever want my son to think I begrudge the care I give him. I don’t want him to feel anything other than cherished. The truth is, however, that your “difficult day” has resulted in many more rubbish days and weeks for me.

The impact of your decision hangs over me like a bad smell as I grapple with what it implies about the value of my son’s life.

I have to decide what to do next. Do I start the letter writing and complaining? Do I take on the role of advocating, and highlighting how ableist this decision is? Sadly, I know from experience that trying to validate my son’s needs to a professional quickly eats away at my joy. It is an exercise that costs me much more than the time it takes to write a letter. I know that at some time in the future, all I will have are the selfies of us sitting on the sofa together. When all I am left with are the memories we have created. So I have a choice to make.

Do I line my filing cabinet with more letters to you, or make memories?

Be assured my husband and I will continue to sit with all our sons, for as long as we are able. In the meantime, our backs will bear the brunt until we can raise the money for a ceiling track hoist. I really hope you don’t suffer from too many “difficult decisions” because life is tough and then you die, so make it count.

I also hope you manage to improve more lives than you hinder. After your hard day at work, you get to leave. Sadly, I don’t have this option, because this is my life, not a job I can clock out from. Once you are home, after your difficult day, I hope you are able to relax on the sofa with your loved ones. When you do, please spare a thought for this family who, as a result of your “difficult day,” have had this “luxury” restricted.

Yours,

Rachel

P.S. I know you aren’t a baddie and you have your own struggles, ones I know nothing about. I’m not trying to create an “us and them.” I honestly wish you all the best, but thought it might be helpful if I expressed the impact these decisions have on real families like mine. One day I might write and let you know what a “difficult day” looks like for me.

After writing this letter, I told my 9-year-old son J about what happened. First, he was teary before quickly becoming angry. I told him that I had written a letter to the council explaining how I felt, and he could, too.

“What good is a letter from a child?” he asked.

“What you think is really important. Grown-ups write letters to the council all the time but 9-year-old boys don’t,” I assured him. “We all need to say what we think is right, no matter how old we are.”

I suggested he put pen to paper and promised it would count instead of homework… here is what he wrote.

It reads (all misspellings left intact):

Dear ___ Council,

My mummy has told me that you won’t let my famaly have a houst in our living room so my disabled brother can sit on the sofa. I heard you said it cost to much to install but from leaving the EU don’t we have lots more money? (It seems the propaganda reached Year 4.)

He is very special to me and we are all uneaque we sould have the right to sit with him. As well as this he is getting heavyer and my mum and dads back are getting weaker. Taking away our happy memerys will be reasting on your soulder.

Sincerearly J

I’ve posted the letter, and I hope they give him the courtesy of writing back. I’m not expecting a change of heart. But once again, I hope this highlights how decisions made by professionals around a table impact lives, not just of disabled children but of those who love them.