The reality of having a daughter with a rare chromosome disorder that comes with a long list of symptoms is that not much in life is fun any more. It impacts everything; every plan, every event, every day.
It’s like living in one of those fairground mirror halls where your brain expects one image, but the reflection in front of you is completely different. Yesterday we went to a class specifically for children with special needs, I was really looking forward to both the class and meeting the other mums. I drove the 45 minutes to get there, as there is nothing any closer to us like it, and as we pulled into the car park I saw Imogen bend forward in her car seat in the mirror. Please god let it not be a seizure I thought. Unfortunately it was. This was bad news for many reasons. We had been 6 weeks seizure free prior to this, and now my mind is whirling as to whether this will be a one off or if its the start of the epilepsy getting worse again. Is it because we are reducing one of her old medications? Is it because she is teething? Is it the heat? Is she getting ill? All these questions.
Also on a less important point, this was really bad timing. After a seizure Imogen will do nothing but sleep for a good 2 hours. So we went into the class and sat and watched the other babies taking part while Imogen slept or cried for the whole time. I felt like crying too. It’s the fair ground mirrors again, nothing’s as you envisage it, no plans are secure. ‘Pencil everything in’ is the mantra of mums of children with special needs, everything’s subject to change with a short notice appointment date, a sick child or a seizure.
The reality is I’m not alone, thousands of parents face similar battles every day. Talking to them, meeting them for coffee, reading their blogs, connecting on Facebook groups is so useful and therapeutic, they just get it! These wonderful strangers in the same situation as me are becoming friends and allies in this strange new world. Even among everything they have going on they come online to answer questions and give advise, they take time out of their days to meet for a coffee and a chat, they open up about their lives, their children and dealing with a diagnosis like Imogens. They are among the kindest, most generous and special people I have ever met.
This week is Rare Chromosome Disorder Awareness Week. And at the forefront of this week is Unique. Unique supports 16,000 families around the world, providing detailed information on conditions so rare there is no other literature on them. Putting families in contact with each other, and collecting information on its members as they grow up so that our knowledge on the effects of each rare disorder becomes greater over time. They are an incredible charity and this journey would be much more lonely and scary without them.
For more information on the work of Unique visit www.rarechromo.org