Additional Needs

Control gives me comfort

Posted by Sarah Kay on 4th February 2021 Additional Needs, Advice & Support, Disabilities

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I joked the other day about being a control freak…or a “control enthusiast” as comedian Sarah Millican affectionately calls it, sounds so much better.

As I thought about it, I felt like maybe it was a trait I should apologize for, or try and address, but I don’t think I want to!

There’s always been a bit of it there, but it’s definitely got stronger since I had Heidi. (Heidi was born in 2015 and experienced a HIE event, a lack of oxygen to the brain, shortly after birth. She has cerebral palsy as a result and lots of extras!).

You see as soon as things took a dramatic turn with Heidi, any control I may have had was taken away from me.

My birth plan (which was pretty relaxed to be fair), went out of the window.

I didn’t get to choose the first blankets she was swaddled in as the room was full of doctors and she was whisked away to intensive care.

I didn’t have the choice whether to breastfeed or not as she was fully tube fed (and still is).

I didn’t choose how we spent our first few weeks as a new family because we were in hospital, with doctors and nurses doing all they could whilst we watched on in shock, before our fight and survival mode kicked in.

The only thing we (Steve my hubby and I) could do was try and claw some of that control back.

I felt a little better by tidying Heidi’s hospital room; a spreadsheet (I know, geeky or what!) gave me security as we tracked Heidi’s feeds and weight gain; a diary helped me to log changes and progress, no matter how small; even ironing muslins made me feel like I was achieving something, when so many other things had been collapsing around me.

And this is how we carried on, for weeks and months, and as Heidi got stronger, so did we.

We established a routine.

We got organized with feeds and meds.

We packed a hospital bag (our “oh sh&t” bag!) in case we needed a short-notice dash to Children’s Unit. We drew up a list. We planned ahead.

We had spare spares (nappies / suction machines / chargers). We did everything we could to make life as easy as possible.

And it made me feel so much better.

Almost 6 years on and we are still pretty much the same, apart from the ironing – that stopped completely at the start of the first lockdown!

I draw up Heidi’s meds for the following 24 hours, I do a weekly medicine check so I can ring the pharmacy and order anything we might need, we still love a bit of an Excel doc….the list (literally!) goes on.

It’s just routine, and I don’t do it in an anxious way, it’s just how I roll.

I realise that control is my comfort.

I like a plan, I like to be prepared (never come to me for anything spontaneous!), but I also recognize that sometimes life doesn’t go to plan.

I work hard on accepting when control isn’t possible, how I have to adapt, or re-focus.

It’s way out of my comfort zone, but sometimes that’s not a bad thing I guess.