“Please stop, you’re hurting me. Please stop, you’re hurting me. Please stop, you are hurting me”. I say these words over and over, tears silently leaking down my face. I try to prise his fingers off but I just can’t release his iron-clad grip. He bangs his forehead against mine repeatedly. Thud. Thud. Thud. I …
noun: dread; great fear or apprehension. We’ve all felt it. For some it feels like a hard heavy lump in your chest or throat, for others it feels like a suffocating weight is pressing down on your lungs, either way the message is clear: something is not right. In fact, something feels very wrong indeed. …
My husband and I have lived in 7 different homes since we first moved in together 10 years ago. Some were short-term, some much longer. As we gear up for another move, this time feels different. As we’ve gotten older, our roots have grown where we live. Those roots sprouted and shot off in different …
With Kasper’s third birthday rapidly approaching, I can’t help but look back over the last three years and everything that has happened. I got thinking about what it means to not only be a mother but a mother to a rare child and, in fact, what mothering means to me. To mother: verb To mother …
Long silky ears stood to attention in the tall icy grass. I watched as the hare glided back and forth through the lush frozen garden. I daren’t move a muscle for fear of scaring it away. Woodpeckers pecking away and lambs bleating were the only sounds I could hear. There was no manmade sound in …
Five pairs of eyes all gawked intensely at my son who gazed around completely oblivious. In their owner’s hands lay clipboards and pens. Their masked faces only highlighted their stares. I sat holding my son, silently wishing my husband could be by my side in what felt like an ever-shrinking examination room. The claustrophobia was …
Before reading this, please know that I am aware that I am writing this from a position of privilege. I know that not everyone is able to go on holiday for various reasons and they may not have a partner. I also acknowledge that my son is not medically complex. This is just one perspective …
A guide to getting needs met (by somone who is still learning) Read More »
“When my rare son was born my world expanded”. These words swirled through my mind as I stood with the winter sun on my face and looked out over Lake Geneva towards the Alps. I thought back to when my son was born and nothing could have been further from the truth for me. I …
“How did this happen?” we asked. The geneticist calmly explained how genetic mutations occur. “My wife keeps telling herself that she somehow caused his disabilities”, my husband said. The doctor looked me in the eye and said “no, you could not possibly have caused your son’s rare genetic syndrome”. Hearing these words was like someone …
Today my heart hurts. It hurts for my son and the world that we live in. One where disabled people are neither considered worthy nor important. Now that the tears have dried up, the anger has set in. Let me explain. I spend a lot of time alone with my son. Finding activities that are …
