Additional Needs

The grief in parenting a medical fragile child

Posted by Carolyn Voisey on 29th January 2020 Additional Needs, Advice & Support, Disabilities

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Just in case anyone was in ANY doubt, I absolutely adore my son. He is the most remarkable, beautiful, perfect little human.

But that doesn’t stop the grief that comes from parenting a child who is, simply put, medically fragile.

I remember the day of Sam's first seizure vividly; the smell of coffee, the sound of music playing next door, the moment when my instincts suddenly screamed that something was very, very wrong.

24 hours later, our world shattered as his first of many diagnoses was gently given to us. But we dared hope that medication would stop the seizures.

I have never come to terms with seeing my child have a seizure and feeling utterly helpless to do anything. And they’ve never fully stopped.

Day to day, I’m happy and bubbly, chatting away to anyone who’ll listen, with at least 4 different projects in progress at any one time.

It’s a defence mechanism; if I stop, I’ll likely as not start overthinking and descend into the abyss of anxiety and depression.

As someone who already has an anxiety disorder (OCD), and a family history of anxiety/depressive illness, I’m right up there at the top of the ‘high risk’ group for relapse.

Over December 2019, I took time out to rest. I went to bed as me, and woke up a totally different person. Barely able to get out of bed, unable to eat, consumed with anxiety, grief and pain.

Grief for the life we may have had, the milestones my baby hasn’t reached. The many times I’ve held my sons hand and desperately wanted to put myself between him and death, to just give him a chance to live.

The way you feel your heart breaking as you hold your child still for a painful procedure as they fight to get away, pleading with you to let them be.

It’s how when my son is in a seizure I only notice that I was holding my breath when he starts to breathe again.

Its grief for the strain my marriage is under, continuously. Constantly being on high alert for the next emergency leaves little time for being a couple, and I miss the time we spent together when life was less complicated.

Is it any wonder SN parents often struggle with mental health?

Grief, anxiety and depression are a triad of cruelty. Parents of medically fragile children are engaged in battle on a daily basis for services, support, equipment, acceptance.

Sam’s birth remains the greatest experience in my life; he reminded me why life is precious and I knew from the moment he arrived that there was nothing I wouldn’t do for that little boy.

The rewards and joy that come from being his Mum are stratospheric, but the anxiety and grief are always just under the surface.

No matter how good the good times are, there is no denying that the lives we are living could not be further away from what we dreamt they would be.