It Gets Easier…

When I first found a parents’ forum online, within days of Heidi being born, that was dedicated to those affected by HIE, I felt an overwhelming sense of relief.

We were no longer on our own, and we no longer felt like the odd ones out (anyone who has had a full-term, slightly chunky, baby in NICU probably gets what I mean).

I had so many questions in those early, scary, foggy days. I was grasping for anything that would give me hope, and desperately wanted someone to tell me that it would all be ok.

The advice that came from so many experienced parents in the forum was that the first 12 months would be the hardest, and that it would get easier.

12 months? That seemed like such a long time, especially when we were just a few weeks in.

How on earth would we make it that far?

Somehow though, with a little luck and a lot of support, we did.

In fact, we’re now over 3 years in to our journey and those wise words ring true.

The first 12 months were by far the toughest.

It’s not surprising really – for families like ours there’s the trauma of what happened (HIE is a lack of oxygen to the brain which causes injury), the uncertainty of what the outcome will be, the fear of hospitals, the lack of knowledge, the questions, the learning, the sleep-deprivation, the guilt…it all adds up, and the way it impacts families can vary greatly.

I clung on to the magic “the first 12 months are the hardest” and almost counted down to the 13th month.

I felt like it should arrive with a fanfare, maybe a marching band, and balloons!

Of course, it didn’t – it just kind of sneaked past us, and before we knew it we were through the worst of the storm.

The things that I found most difficult to dealt with in the first year are now much more manageable;

I’ve come (closer) to terms with what happened;

I don’t care if people look while I’m doing suction;

I have prepared responses for unexpected questions from often well-meaning onlookers;

I take pride in celebrating Heidi’s developments, no matter how small they may appear to others;

I can, mostly, talk to friends without bursting in to tears (but not yet managed a full episode of DIY SOS yet!);

I have the confidence to challenge healthcare professionals and know that my instinct is often right; I don’t give two-hoots any more if people see me as “that mum” and will take on any battle if it has Heidi’s best interest at heart.

Whilst lots of things have eased, other things have taken their place in the “to worry about” folder in my head;

Heidi’s growing so it’s not as easy to scoop her up and wander round with her;

her head control is something we’re still working on so we’re now struggling with suitable seating when not at home,

unless she stays in her wheelchair which presents it’s own accessibility challenges;

she is now too big for the baby-change facilities when we’re out and there’s unfortunately a real shortage of the amazing Changing Places which are suitable for children and adults with additional needs;

her muscles are growing and her hips are becoming displaced so there is concern she may experience pain and need surgery further down the line.

The list goes on.

So many uncertainties still, so many questions and so much to learn.

What we have learned though, on this crazy journey, is that these kiddies can do amazing things, and you adapt, and you cope (and there is support out there if you need it, which is so important).

You can’t predict what will happen, but you also can’t underestimate their potential, and you can’t quite believe just how much love you can have for one little person.

I think some things just go with the territory of being a parent.

The worry won’t end.

My friends with children (neuro-typical) aren’t worry-free…they range from potty-training troubles, to sibling rivalry, to mobile phone demands…may seem insignificant compared to some of the things an SN family will be losing sleep over, but just as real and to that person, and just as important.

It’s not always easy, and others sometimes ask “how do you do it?”.

You know what?

I have no idea!

I’m in such admiration of the other parents I see and take guidance from, and I don’t put myself in the same category.

You do what you need to do, and you do your best.

If you are just starting on your journey then hang on in there…I wish you lots of best wishes (and a little fanfare at month 13!).

About Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and support others who may be on their own journey.

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