Surviving the services around our children

I just want the bare minimum tools we need to survive.

I’m not asking for the world. I am so bored of fighting and advocating. I am tired.

Today I feel unseen, misunderstood, angry, frustrated, sad, depleted, unheard, demoralised, undervalued, physically unwell, mentally drained, and so many other similar feelings.

The unfortunate thing is, if you’re the parent carer of a medically complex child, I bet that last paragraph resonated for you.

Sure, I don’t feel this way every day. It’s a steady accumulation of micro stresses that have built up and caused a bit of a collapse. Today was just a bad day. I hope that tomorrow I wake with a renewed energy to fight again and that maybe I will be listened to this time.

It’s impossible to be fiercely independent in our world. You so regularly rely on someone in a position of power and authority (that hasn’t actually lived a life even remotely similar to you) to grant access to certain services.

I hate how vulnerable we have to be. In the last week alone, we have had to physically measure all of Amy’s medical equipment and list it, scan and send countless personal documents, I have been asked what support we get other than respite and our finances have been looked through with a fine-tooth comb.

We spent a lot of this winter in hospital. Passers-by unable to resist the urge to peer through our door. Our life in the fishbowl. Every aspect of our lives for all to see.

It’s strange to be simultaneously so on show, and yet feel so unseen.

I don’t want pity. I don’t want to be a victim.

I don’t want praise. I don’t want to be a hero.

I really do just want my daughter to have adequate, safe equipment, and reliable healthcare to optimise her lung function everyday. I want to prolong her life as comfortably and for as long as possible. I want to spend less time on admin, proving why we need ‘xyz’ and looking into grants. I want to spend less sleepless nights researching medical options to prevent some of the horrors we endured this winter from happening again.

It feels at the moment like we are working so hard and yet how things need to be are still out of reach.

Quite often it does feel like if money were no object that so many of these worries would go away. Ultimately, if we had endless money we wouldn’t need to worry about the bills, we could access private healthcare, we could pay outright for all of the adaptations, respite, equipment, vehicles etc we need. I don’t care about luxury. I don’t care about riches. Obviously, money doesn’t fix everything. Everyday we deal with medical traumas that can attest to this fact.

“I don’t know how you do it.” They say.

“I haven’t got a choice” I reply.

What matters is every heartbeat in my home.

And I know that even though today was hard, for them I’ll do it a million times over.

To fellow parent carers out there. I hope your hard days don’t turn into hard weeks and then into hard lives. What we do is not for the weak hearted. It isn’t our children, but the systems in place around them.

You have no doubt found a strength and resilience in you that you never knew was possible. Whilst it is a superpower, it is also likely to strip you of your identity and wear you down. I wish you drama free, and even boring times. We always joke that when we have no news that means everything is great. I will always settle for boring.

Every now and then there’s a piece on social media doing the rounds along the lines of “I see you taking your child to therapy… I see you in the hospital waiting room” etc, and it always evokes an emotional response. We all want to feel seen and heard. I definitely see and hear our fellow families and my heart aches knowing so many of us have these battles when it’s all hard enough.

To the services out there. “We have always done it this way” is one of the most dangerous phrases I have ever heard. We know you have your processes, your tick box exercises, and budgets to protect. But do try to take a step back and realise that one size does not fit all.

Most of us just want what’s right. We aren’t seeking special treatment, we HATE asking for help… we are actively trying to not need you… so please, talk to us with empathy, patience and respect. Try to be that one positive person we encounter that day that sees us and seeks to help. Those people are magical.