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7 Years of Loving You

7 Years of Loving You

Our triplets were born at 32 weeks and 4 days gestation, making them “preemies”. We knew one of our babies would have spina bifida, and possibly hydrocephalus, but didn’t know how affected he’d be until he was born. I vividly remember the team bringing him out of my tummy last (but not least!) and he cried the loudest, despite being a teeny 2lbs 10ozs. That was seven whole years ago now so I thought I’d write about seven things I love about him.

  1. “He’ll never walk”

Yes, that’s a strange one to start with, but stay with me. We were told all sorts of things when I was still pregnant like he was a girl (oops) and the spina bifida wasn’t too bad. It was after his first year that we were told he’d never walk. He is indeed a full-time wheelchair user, but what a lot of people don’t know is Jacob CAN walk. He has a special frame that goes around his body offering him full support, but the ability to move. He calls it his “Hulk Suit”. His orthopaedic surgeon will tell us it’s not “functional walking”, which is true, but it does all our hearts good. He’s also defied the odds and can now control some movement in his quadriceps.

  1. He adapts.

When he was little, Jacob’s newly formed speech regressed completely. We were all taught Makaton, which he took to beautifully. I’ve videos of him singing when he was barely even two years old. He did start speaking again but still uses Makaton since it’s used so freely in his school. It’s amazing!

  1. He has a wicked sense of humour!

We are fairly proud of the fact that Jacob's humour has developed given all he has faced. He gives epic one-liners and has us all in absolute hysterics! He’s a total showman and loves to be the centre of attention.

  1. He will never give up.

This can be both a quality and a bit of a stumbling block for him at times, although mostly the former! In his seven years, he has had eight surgeries, been in A&E over 50 times, admitted to hospital more times than we can remember, visited an insane amount of medical professionals etc and he still just gets on with things. Of course, it gets to him, but he doesn’t “stay down” long. He’s amazing.

  1. He has developed in ways they said he never would.

Like I’ve said, he has some controlled movement of his quadriceps, but that’s not all. He was given a diagnosis of epilepsy due to epileptic seizures showing up on consecutive EEG tests. He then had a further diagnosis of “non-epileptic seizures” (NES) which were due to his brain being in absolute overload. He had several of these every single day but thanks to supporting from a special school and a great team, he rarely experiences these anymore. His brain was apparently “unreachable” yet he clawed his way back. We are so proud.

  1. He’s amazingly empathetic.

They say people who go through the hardest times will always understand the pain in a different way. I see this in Jacob. He watches his identical twin brother (who’s “healthy”) and sister with nothing but love. If they fall and get a cut, he will want to help look after them. He worries about the boys and girls in his class who are more vulnerable (in his mind) and he worries about me when my Multiple Sclerosis flares. His struggles have taught him to understand other people’s. He recently said to a family member who’d been through a trauma, “I’m so sorry you’re sad”. What insight for a young child!

  1. He has a vivid imagination.

Jacob is one of those children whose teachers will comment “participates actively” in class. Translated: he never stops talking! Jacob tells stories to the point of creating whole other worlds in his head and we have learnt to just go along with him. It seems to be more than coping for him, he enjoys thinking up characters etc. He did once tell a teacher that I “ate coco pops and drank wine at breakfast” though, which wasn’t quite so good (and certainly wasn’t true. The wine anyway…)

Every year with Jacob has brought fresh challenges and heartache, but also an immense amount of pride and joy. I don’t know what we ever did without him in our lives! Happy birthday our little warrior, we truly couldn’t love you, Ben and Chloe, anymore.

Firefly Blog

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

Katrina Dorrian

Meet Our Blogger

Hi! I'm Katrina, I have 8yr old triplets; one who has spina bifida, hydrocephalus and epilepsy. I also have MS, so we've a busy (but happy) house!

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