There is a little story that has been doing the rounds called ‘Welcome to Holland’. It describes what it’s like when you enter the world of special needs/disability and medically complexed parenting.
It starts off as if you are packing for a great big trip to Italy – where it’s fabulous, grand and exciting but when you arrive, you aren’t there at all. You have actually arrived in Holland where it’s slower paced somewhat. For the rest of your life, everyone brags about how great Italy was and you say ‘yes, I was supposed to go there too, that’s what I had planned’.
Our trip to Holland didn’t start straight away. In fact, it was focused on being parents to premmie twins who were born 8 weeks early. They remained in hospital for three months before we were allowed to take them home.
We didn’t travel to Holland until my son, at 10 months old, suffered a severe prolonged seizure which resulted in his left hemisphere shrinking (hemiconvulsion), further leaving him paralysed down the right side of his body (hemiplegia) and which resulted in his brain damage (ABI – acquired brain injury).
For the first 12 months during this turbulent time, we were crazy busy with appointments for early intervention – physio, occupational therapy, speech, swimming, AFO leg casts, thumb splints and bumper head bands for his falls during his seizures. After the 12 months, of what seemed like an age, we received a confirmed diagnosis of HHE Syndrome – Hemiconvulsion Hemiplegia Epilepsy Syndrome. It was a whirlwind at first, then it all stopped. Eerily, it was like we were in the eye of the storm.
I can recall the moment I knew our lives would be forever changed – when I found him convulsing in his cot. I certainly now know there was nothing I could have done differently, it still would have happened. His brain would have still shrunk, he would still get the brain damage that challenges him. Unfortunately, It is the nature of the beast. There is no rhyme or reason and no amount of self-loathing and guilt will change any of that.
Ironically, when he was safely in hospital during those initial two weeks, his seizures wouldn’t stop and even the professionals didn’t know what to do or exactly what they were treating him for – just that he had an aggressive form of epilepsy. They tried all the emergency medication seizures and kept a watchful eye on him and his vital signs. As it is now a few years after this event, I now accept that, as with all parents who go through something traumatic, it stays with you and you remember like it was yesterday.
The thing with arriving in Holland, like any new place you go to, there are things that you will absolutely loathe about it but some things you will absolutely love.
It’s not like you would pick any of the things you loathe about a place, and have them on your ‘go to’ list… but sometimes, just like the paths that are less traveled in life, the ones that amaze us are the most eye opening, challenging but yet, rewarding paths. To put it simply, you see a different side to life, to a lifestyle that never once before entered into your imagination.
For me, one of the first moments of realising Holland wasn’t all so bad, was when I didn’t think my son would ever be able to talk again. He said his second ‘first’ word – after losing all his speech, months and months later. It was incredible. Despite even now, at nearly five years of age, he is described by therapists and doctors as non-verbal but regularly he will say a word, just the one. This one word will be a huge effort for him due to his language processing issues but the emotion of that one word, in that moment, is 100% sheer joy.
It sounds ridiculous, but it’s the feeling you have. Like when you are in love, you can’t describe it to people, because it’s how you feel. This is how I feel about first-time moments with my boy. He has a very rare condition, that so far, we have only located a handful of families with children around the world who are in our Rare Connect patient page group and they all face daily challenges on so many levels. Yet, when he reaches a milestone, that we once thought was not possible, it is a feeling of sheer joy! An abundance of love flows for this little human who gives it his best shot, even on his crappiest of days.
If someone had told me that my grief in those early days, would eventually develop into a feeling of pure joy and love for him and what he was achieving, I would have thought them mad! However, here we are, nearly four years later, and this is how I describe it. It’s certainly not a pity party – it’s a celebration, that despite how tough things can get at times, Holland is a damn good place once you allow yourself to drink in the enormity of what you have been dealt with. At the same time, you take in the achievements, the milestones and sometimes even the inchstones – and boy, do they achieve and prove those doctors wrong!
To go back to the original story of arriving in Holland, rather than Italy, once you start to look around Holland you will find others that are accepting, or finding their way in acceptance, of this new lifestyle and celebrating the joys that also come with it. You will actually find an abundance of people, all with many different stories, but together, wonderful achievements in life are celebrated and that IS special.