Love is in Our Little Boy

child-917366_960_720When I was younger, love wasn’t a word that was really used in our family. We did love each other, but I never really thought much about it. In my teens, I read Jane Austen, Georgette Heyer and the Brontes. I thought love was a hugely romantic thing that happened to other people and I yearned for it myself.

In my twenties I had a few short relationships, but they didn’t last. I had to learn to love myself first, before I could hope to be loved by anyone else.

It was only in my late thirties that I met my husband, and right from the very first week that we got together I felt like we were an old married couple. No grand passion, but instead the comfort of slippers and hot chocolate and knowing that you can rely on that person no matter what. We got married and had our first son, and again my definition changed. Love now meant drowning in overwhelming emotions as I looked down at the perfect little being that we had created.

Fast forward to the 1st of July last year. A date that I will remember for ever and always. The pediatrician made sure that he had a box of tissues in the room ready, so I knew it was not going to be good news. Our youngest son, P, was diagnosed with Mucopolysaccharidosis II (Hunter Syndrome), a disorder which is usually progressive and life-limiting and for which there is no current cure.

Weekly treatments were started to replace the enzyme that his body is missing, but we were warned that it does not reach the central nervous system. Over the next couple of months we faced a barrage of tests and appointments for him, and the bad news kept coming. It was confirmed that he had the most severe type of MPS II and the disease would continue to progress in his brain. The only hope was to get on a clinical trial that would involve more surgery and no guarantee of success. I can hardly begin to explain all my emotions during this time – imagine that any future you’d ever imagined for your child is ripped away, and you don’t even know if he’ll have a future at all.

But one thing I did learn is that, as in the words of a song I used to enjoy:

Love is all around.

It took something as big as this to make me realize how much I was surrounded by it.

Love is in the Makaton lessons that help a grandmother communicate with her youngest grandchild.

Love is in my sister who runs me a bubble bath and feeds me jam tarts when I think I can’t cope with it all for a moment longer.

Love is in a bunch of yellow roses, as beautiful and sunny as P himself.

Love is in a box of chocolates as big as my table, sent to save this committed vegetarian from succumbing to the comfort of a bacon sandwich.

Love is in another mother on the playground who holds my hand while I struggled not to cry in front of the children.

Love is in a friend carrying out a list of DIY jobs for me despite running a marathon the day before.

Love is in so many people, friends and strangers, donating to my fundraising page.

Love is in my dear husband who, despite being shell-shocked himself, can make the world seem simpler and better with just a few sentences.

Love is in the nurses who chivvy me to get some food and rest during treatments, or who work late to help us get to another appointment.

Love is in other mums of children with special needs who share their stories online and give me their support despite their own struggles.

Love is in a big brother who wants P to go to his school so he can still see him during the day.

Love is in our weekly portage visitor who cries with me when she hears the latest news.

And love is in a little boy who takes such joy in dancing and singing round the living room trailing a streamer of loo paper he has just filched from the bathroom. A boy who if I leave the room for five minutes greets me on my return as if it had been a year. A boy with the most infectious grin who wins hearts everywhere he goes. A boy who can make us smile and laugh even now.

Can love conquer all? I don’t know, but it goes a pretty long way to making things better.



Sally is married and lives in North Yorkshire, UK, with her husband and two sons (3 and 5). The youngest was recently diagnosed with Mucopolysaccharidosis type II and since then, Sally has been blogging about learning to live with this condition. Find her on Facebook and her blog, A Hunters Life.





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