Coming to Terms With My Realities as a Disabled Parent

I’m honest with my friends about my health struggles, and I also write for MummyKind about some of my experiences.

The truth is my health is often poor, but I don’t make a habit of advertising it. I find it so difficult to be honest about my struggles as a disabled mum, because so often people hit me with “if you’re disabled, don’t you think it was selfish to have a baby?” It stings because they don’t understand that I’m a good mum, only that I have difficulties and that must mean I’m a bad parent, right?

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Newsflash. Everyone has difficulties. It’s how you deal with it that matters.

I’ll try and keep the medical jargon to a minimum while explaining some of what I have to deal with day to day — having dealt with some of my conditions since birth I’ve been told that I sound like I ate a medical textbook!

I currently have seven conditions diagnosed, with more in the pipeline (lucky me, eh!)

Ehlers-Danlos syndrome — This is one of my most prevalent illnesses. I was born with EDS, and while every day is different, most days are an uphill struggle. EDS is a rare condition that affects connective tissues. Connective tissues are present in skin, organs, blood vessels, muscles, tendons, ligaments and bones (so basically everything). Symptoms I deal with every day are loose, unstable joints that dislocate every day, chronic pain, easy bruising, muscle weakness, fatigue, and problems with internal organs.

Orthostatic hypotension – When my new orthopedic surgeon heard I had this, he said “really? But you aren’t old!” Guess what, young people can have orthostatic hypotension too. When I change position from lying to sitting, or sitting to standing, my blood pressure plummets to dangerous levels, and I lose consciousness and faint.

Mast cell activation syndrome – the cells in my body that react when you have an allergic reaction are over active, and my body spontaneously develops new allergies all the time, even to something that was safe yesterday.

Gastroparesis — my stomach can’t empty itself as effectively as other people’s can, which means food stays in there for far too long. Glamorous.

Chronic fatigue syndrome/myalgic encephalomyelitis — I’m super tired all the time! Yay!

I also have celiac disease and asthma, but those seem pretty pale in comparison!

Now that’s out of the way (and well done if you’ve got this far, medical stuff can be snooze-inducing!) hopefully some of what I’m about to say will make more sense!

The realities I experience living life as a disabled parent will be very different to someone else’s. Life is so variable, and what’s difficult for me might seem like a walk in the park to someone else, and vice versa.

The biggest reality I’m trying to deal with right now is that parenting my daughter is nothing like I thought it would be. Though I do the best I can, there are days like today where I really can’t function enough to look after myself, let alone my little one. I’m blessed to have my husband at home with me all the time (fainting unpredictably means I can’t often be left alone) and my wonderful John is often left to care for my little climber while I have to rest. I often feel a real sense of guilt because I’m not living up to the perfect image in my mind of what a mother should be. I’m faced with the reality that I can’t do all I want to for her all the time. And that’s OK. It doesn’t make me a bad parent for having to take a step back and recover my strength. If anything, it’s a good example of self-care to set for my daughter.

It also strikes me that my monkey won’t grow up in the same way other children will. While it’s great that both her mum and dad are home with her all the time, it worries me that I’ll miss out on important things later down the line because of my health. Because my illnesses are so unpredictable, I’m often fine in the morning and struggling in the evening, or the other way around, and that can be difficult to understand for one so little.  I might not be able to take her to the park when she wants to go, and I might have to watch her play from a distance rather than getting involved.

Not being afraid to ask for help is a big lesson I’ve learned over the last few months. It is practically impossible to look after a crawling explorer while you’ve got a hip that is constantly dislocating, you’ve got a migraine which is making you vomit and see stars, you’ve taken enough prescription medication to tranquilize a horse, and you’re dealing with an allergic reaction from something (and it really could be anything at this point). When I first asked for help, I have to admit I felt a little ashamed, as though I was being naughty for asking for help. But that’s when I realized we have the saying “it takes a village” for a reason. And in our family’s case, it really does.

But it’s not all doom and gloom. While I may have painted a bit of a dreary picture, I get to see my daughter grow up in a way most people don’t. With any luck, I won’t miss any firsts, and while physically I might not be able to do as much as I want to, I’m still able to raise my daughter to be a kind and considerate human being who is already being exposed to diversity at a young age.

While I may struggle more than most, my struggles don’t define me, and more importantly, they will never beat me.

What realities are you struggling to come to terms with?