How have we got here? It will soon be a year since we were first told the news that no parent ever wants to hear. An unimaginable pain that crushes every single part of you. I don’t think I will ever find the words to describe how Danny and I felt that day. And I can honestly say that it has never eased. We’ve learnt how to mask it and have somehow managed to put on a brave face but it is certainly not any easier to live with now than it was in those very early days.
A year ago this week, Hugo was diagnosed with Hypermobility. Little did we know at that point that his physiotherapist suspected Duchenne. Even a referral to a paediatrician didn’t give us any reason to suspect anything seriously wrong. At the time, that was a bad enough diagnosis. But I can honestly say I would do anything to have that diagnosis back. I often wonder where we would be now if we hadn’t attended that paediatrician appointment. We very nearly didn’t go because we were satisfied that the Hypermobility diagnosis was accurate. The main reason I stuck to the appointment was because I wasn’t entirely convinced that Hypermobility alone would cause Hugo to have such difficulty in climbing up and down the stairs. Something was niggling at me and I felt that I had more questions that needed answering. I thought it would be something as simple as flat feet or tight hamstrings, I didn’t know anything about Muscular Dystrophy and never in a million years thought it would be anything as serious as Duchenne.
It still doesn’t seem real. I don’t think it ever will. However, I’m not in denial anymore, Hugo has this condition and that’s that. But the reality of it all will never truly sink in. Who wants to accept that their child is growing weaker, not stronger? As a parent, the second your child is born, you instantly have aspirations for them. A belief that they will have a carefree childhood, a successful career, their own family, and a long, healthy life better than your own. It’s our job as parents to ensure they do all the things we never got a chance to do, have better opportunities than we ever had, and not make the same mistakes we did. I wanted the same for all my boys; for them to grow up having the best memories, a strong family unit filled with love, laughter and happy times. How am I ever expected to come to terms with the fact that in 20 years time, one of my boys will no longer be here?
It’s hard not to think of the future. I won’t lie, it breaks my heart everyday but I try not to let it consume me anymore. However, when you know what lies ahead, it’s hard to stop it tearing you apart. Hugo will never leave home, he will never fully have his own independence, he most likely won’t have a successful career and having his own family is practically impossible. Riley and Jasper will one day have to face saying goodbye to their brother and best friend. And then there’s all the inbetween stages, dealing with your 10 year old son suddenly losing the ability to walk, then a few years later losing the ability to breathe for himself, cough by himself, feed himself. All these things will be happening when he should be out with his friends, partying till all hours, going to uni, leaving home, getting a job, getting married and having children. All the things we expect to see our children do. For those of you that think we cope well with this situation, we don’t. It’s hard and it gets harder everyday.
The looming 1st year anniversary since diagnosis has been playing on my mind a lot recently. These last 10 months have been a whirlwind of every single emotion possible, and I just know that June the 6th is going to bring every single one of those emotions back.
Since then, we have been in and out of hospital nearly every week, seen numerous specialists, had hundreds of assessments, and been through the ordeal of applying, re-applying and appealing stupid decisions made by those who are supposed to help us. Hugo has had many different medications, procedures, tests, operations and examinations. From an outside perspective, no one truly knows what Hugo has to go through, what we as his parents have to go through, what his brothers have to go through. And all this is going on while we both work full time and juggle family life.
I am so proud of Hugo, and ourselves, for getting this far. My world practically ended on June 6th 2016 and I’ve had to re-build it for the sake of our little family. It has got to be the toughest challenge I’ve ever faced. If I look at the positives, it’s taught me the importance of family time, the value of memories, and the significance of cherishing absolutely everything.