Additional Needs

An open letter to the exhausted Special Needs parent

Posted by Ceri-Ann Brown on 13th June 2019 Additional Needs, Advice & Support, Disabilities

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It sounds really narcissistic and self congratulatory; but sometimes when I'm struggling mentally with everything I read one of my blogs from four years ago where I wrote a letter to myself (as seen here: https://www.fireflyfriends.com/uk/blog/a-letter-of-support-to-myself-raising-a-child-with-a-disability

I found myself reading this earlier to calm myself down. Today was a bad day. The dog cost £157 at the vets (again!) and Amy had her second day of continuous mood swings and cluster seizures.

The housework is piling up, paperwork is getting ignored, and my body aches to the core. It's the second week of the school holidays and the burnout is setting in. I need our routine back, I need space to breathe.

So, I thought this would be apt opportunity to write another letter; 4 years on.

Dear parent,

You do look tired today. Not just the eye bags, but the way that you hold yourself.

Your chest feels tight, you're not even allowing yourself chance to breathe properly. You're wearing freshly clean clothes and yet already it is smothered in prescribed formula and nappy cream.

You brushed your hair and watched more of it come out than probably should. You never did keep to that whole regular haircut thing. Or eyebrows. Or indeed any other "indulgent" form of self care.

Today on Facebook you scrolled an endless stream of "could get used to this view" and quotes like "problems you have now won't matter in a years time so forget about it".

Your current view was a dystonic seizurey child and a poorly dog.

Two beautiful but vulnerable little lives crying out (literally at times) for your help. YOUR help. No one but you.

You can feel yourself crumbling under the weight and intensity of the pressure.

You are quite literally worrying about the exact same problems as last year: seizures, surgery, pain, managing so many things at once.

You spend the day berating yourself for not being enough, for not being able to fix every problem. Yet - if you met someone else encountering the same challenges you would have nothing but admiration, empathy and respect for them.

You know that carers are the most over worked, underpaid and unappreciated people out there don't you?

Do you see the 100s of little things you do everyday... those 100s of acts of kindness that come to you intuitively. Wiping dribble away and applying cream - don't want a rash. Adjusting straps constantly - don't want rub marks and soreness. Applying extra creams to stoma sites, bum, face, everywhere... so much cream and so many types!

The way you prepare meds with care, the way you pack bags and account for every possibility. You need to be kinder to yourself.

You felt lonely today. So lonely. You suppressed tears a few times. Then you felt bad for feeling so low.

Your feelings are valid. Your physical and mental pain is real. No, it never did get easier.

Any challenge you had is either ongoing, or replaced with a different one.

Sometimes everyday feels the same, you either feel like its groundhog day or you're on edge at what unpredictable dreadful thing could happen next. You feel a loss of self worth - imagine people treated your work like a "real" job.

You don't want to be the victim. You don't want to be the hero. Yet somehow you feel like both. You don't want pity, you don't want a parade. But you want to fit in, you want your normal to feel different.

You miss old normal. You miss the normal you were robbed of that you see lots of other people experience. You grieve the normality you wished for your child.

Her only pain should have been bumps and scrapes from playing at the park... it shouldn't be from muscle spasms, and seizures, and whatever else is going on.

You feel a guilt that you can never truly relate to what your child goes through.

You feel about 10 different emotions a minute sometimes - and that's draining. Sometimes you question your own sanity - is it normal to be this tired. Is it normal to post a sad and desperate Facebook update one moment, and the next a picture of a hilarious dog.

You still matter. You're still important. You are still valid. Your contribution is colossal. You are doing everything you can and then some.

You care too much... or not at all... but you recognise this flaw and work on it daily. You feel everything and nothing at once, you're like a comet flying through the sky travelling at a great velocity but also burning.

You want people to understand... but at the same time you know that no one can ever truly understand what it is like to be you.

Just like you can't ever truly understand someone else. We all have our problems, it doesn't matter if someone is worse off or better off... you are in your own bubble and whatever troubles you troubles you.

You don't have to do every job. Everything doesn't have to be perfect. In your child's eyes you are perfect - you hope. Or at least she knows you're trying - you hope.

Everyone doesn't hate you. You're not a huge burden. Just because you annoy yourself doesn't mean you annoy everyone else, and you are worthy of love.

You want a holiday. Oh how you long for one. You know it won't be relaxing or easy, you know it'll be like a military operation - but you'll do it, and you'll look forward to it. You won't regret it.

Doing different things scares you, you spend too much time thinking about what could go wrong; and that's understandable in your situation. Just try to go with the flow and make memories. It won't be like a "typical" holiday, you'll probably need a holiday from the holiday, but nothing worth doing ever comes easy.

Her smile is all that matters. But you have to accept that there will be tears too, and that doesn't make you a bad parent. You'll feel frustrated, you'll want to cry too, but just breathe through it and stay calm (or pretend to be) like you always do.

There are others out there just like you feeling robbed, isolated, full of grief, full of pride, happy and sad at the same time.

You're not the only one worried about your back in the future, or what will happen when you're gone. You're not alone. You're really not.

Just because you feel it doesn't make it a reality. Your anxious mind will always try to trick you and you must fight everyday to challenge it.

Ignore the "motivational" quotes, don't compare to others and get jealous or bitter.

Focus on being kind to yourself, resting when you can, and acknowledging all of the hard work you do.

As you go to sleep tonight think of all you have done, and your beautiful sleeping child - and know that you worried so that she didn't have to.