“Are You Okay?” - The Question Special Needs Parents Always Answer With a Lie
“I’m fine,” I said, “we’ll get there.”
I change the subject.
It’s the same answer as always and I’m still not really sure where ‘there’ is, perhaps it's being happy.
What I could say is this...
“I woke up in the morning and I’m more tired than I was before I went to bed.
This was because Bella was up for 3 or 4 hours in the night and we still had to get up at 6.30 for the school run.
My husband works away and if I’m lucky I’ve had four hours sleep.
I’m trying to let Bella feed herself independently but I can’t bear to take Oliver into school late again so I feed her and I change her instead of allowing her to do it herself.
We run out the door all bickering.
Perhaps I should get up half an hour earlier – perhaps I am greedy wanting my four hours.
We had a hospital appointment; an hour’s drive each way.
I sit and tell the new paediatrician everything about Bella, she pokes her and says the same as the physio, Bella urgently needs Botox and new AFOs.
I know, we are still waiting for the appointment to come through.
She says she’ll see us again in 12 months.
If I’m honest I’m not sure what we have achieved, I feel deflated.
All I really want them to say is, you’re doing great, you’re doing the right thing – keep doing what you’re doing.
On the way home Bella wants to go to the park.
My heart plummets, I’m too tired to carry her around the equipment, but we go anyway.
I carry her up the slide, down the slide.
I carry her along the monkey bars and over the bridge.
I ignore the children staring, Bella doesn’t notice.
I push her on the swing for twenty minutes and try not to be upset when the mum I tried to start a conversation with politely leaves.
I remember when trips to the park were fun, but this is exhausting and painful because I watch the other children running around and for a moment I feel jealous and incredibly angry that Bella cannot and will never do that.
At home, I desperately want to sit down but we need to do an hour of stretches and exercises.
Bella screams at me, she doesn’t want to do it, she says I’m horrible, I try to explain that I’m helping and we eventually get it done.
I get a phone call...
...the AFO’s that have taken 9 weeks to make have gone missing; our appointment the next day to pick them up has to be cancelled.
They’ll be in touch.
It doesn’t sound like a big deal but Bella can barely move in her current AFO’s and if she can’t put them on she can’t use her walking frame, or her standing frame and she is about to start school.
Stretches done, we collect Ollie and we have a lazy hour doing homework and watching TV.
I feel guilty Bella has had a boring day, I feel guilty I didn’t get time to do her reading or pencil practise and I feel selfish and guilty because I’ve had enough today.
When I put Bella to bed (after dinner and bath time and two stories), she grins and says I loved going to the park today mummy, you’re the best mummy ever.
I realise how lucky I am to have such a wonderful happy girl.
I have just an hour with Ollie, today we talk about our day and I try to keep my eyes open while he tells me about his computer game.
I feel guilty because I’m tired and I miss him so very much.
I haven’t spoken to an adult today, I haven’t had a moment to myself.
So when my friend comes over and asks me if I am OK, I say I’m fine because we have a few precious hours together and I want to talk about my favourite TV programme, or plan a girlie day trip out.
So, friend, please be assured that this is a very important part of my day, you are a wonderful friend and I need you to help me remember who I am, because otherwise I’m just a tired, grumpy mummy.
I am broken inside, I grieve for the child I never had, I am terrified of the future everyday but that’s why I see a counsellor - what saves me is being normal and googling funny cat videos with friends.
One day you’ll ask me if I am okay and I hope to be able to say ‘I’m good, I’m there’ and it will be very much thanks to you."