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Don’t Wait For A Miracle!

Don’t Wait For A Miracle!

One may happen (hurrah! if so), but if it doesn’t, that can be ok too!

(Before you read on, I just want to make it clear that of course I believe every life/child is a precious miracle in itself, I’m not taking away from the wonder of that at all. Heidi is our biggest gift, and we are thankful for every day we have with her.)

The reason I wanted to share my thoughts though is this: so often I see posts about very poorly babies, just like Heidi was, who go on to prove all doctors wrong, hitting their milestones, walking, talking, getting 9 A*s at GSCE (are they even graded like that anymore, I may be showing my age!), despite the rockiest of starts at birth. These are great, uplifting, inspiring….all the positive words. But, I’ll let you in to a secret, sometimes miracles don’t happen, and life can still be all those things.

I hung to the idea of a miracle as I searched the internet while Heidi was receiving cooling treatment in the neonatal unit, only hours and days old. I dreamed it would happen as we brought Heidi home from hospital at just a few months old. I hunted out positive stories from other families as we adapted to our way of life.

All that made me feel better to begin with. We were going to be ok, Heidi was going to be ok (if you’ve read other blogs you may remember I actually thought she was going to be a racing driver at one point after reading about Nicolas Hamilton). But then, all of a sudden, it made me feel worse, a lot worse, as it didn’t happen. Had I done something wrong? Maybe I didn’t do enough physio. Maybe I should have paid for private therapy. Maybe I should have researched treatments abroad. I thought I had failed. I associated “ok” with “unaffected”, and that just wasn’t what life had mapped out for us.

You see Heidi (now 5 years old) in one sense hasn’t had the miracle outcome (go back to my first point, of course she is a little miracle to us). She wasn’t expected to walk - she’s non-mobile and wheelchair dependent; she wasn’t expected to take food orally - she’s fully tube fed; she wasn’t expected to develop a safe swallow - she has a tracheostomy to help manager her secretions.

At some point though, I stopped looking for the miracle. It wasn’t a defining moment, I couldn’t even tell you when it was, but it happened, and I started to enjoy Heidi for being Heidi.

Big miracles may not have been happening, but small developments were creeping in. Her first smile, that we waited over a year for, was like all my Christmases had come at once. I cried when our lovely consultant told us that she would go to school (I cried when she started school, I cried when her first piece of artwork came back from school, I am a big crier, and have totally accepted that!); I was beyond excited when we realized Heidi had started to react to both sights and sounds, having been told early on that she was visually and hearing impaired; I was fit to burst when she started to consistently blink in response to questions and choices given to her.

You see these seemingly small things became the big things to us. They were reasons to be happy and proud of our girl. I saw families of children similar to Heidi, living their best lives, and that then became my focus – to be grateful for what we had, and (try) not giving energy to what we didn’t (don’t get me wrong, that’s much easier said than done some times!).

Of course, I wish for Heidi’s sake that she didn’t have the challenges she does, but she is happy, loved, safe, and developing (even if sometimes it’s in the tiniest of ways).

We may not have had the miracle outcome you read about, but we have our girl, and for that we are thankful. Our “ok” isn’t what we had planned, but we’ll take it. We know things could be much worse. She has taught me more than I thought any daughter could, she knows nothing but nice things in these otherwise crazy time, and she is the toughest little cookie I know. Without realizing it, she has made a difference in this world, and that’s pretty impressive for a 5 year old.

For those parents who have had the miracle outcome, brilliant, it’s what everyone hopes for and I’m so glad it has happened for you. For those still waiting, I hope you are able to find joy and peace in the now, in the small (big) things, and that your “ok” can be a happy place. Our children are miracles in their own way.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sarah Kay

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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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