As we have acquired symptoms, diagnoses, (or a lack of diagnoses), medications and a bucketful of frustration over the years I can understand why there is such a strong ‘Special Needs’ community on the internet. It is a source of support for many, all the more so because being a full time carer is incredibly isolating. Without the information, experience, social contact and, above all, understanding such a network brings many lives would be infinitely poorer.
Having children with complex health issues is isolating and lonely at times, and certainly in recent years I have felt progressively more divorced from other mums in the school playground as our experience of our children growing up is increasingly different from theirs.
I could write about it regularly, share my inner turmoil at 4am when son number 3 is sat crying in pain on the toilet and how I feel utterly unable to wake up properly and hold his hand – let alone alleviate his discomfort somehow. Or I could share my despair at the haphazard and ill-prepared attempt by son number 2′s school made to rewrite an IEP which is 18 months out of date, in preparation for an annual review of his statement before he transitions to high school.
Maybe you would like to hear of the constant tummy pain our daughter endures when her condition is flaring, or the head-bangingly infuriating lack of response from son number 2′s Great Ormond Street consultant after four months of chronic bowel impaction and non-existent motility. But I would rather not. I would far rather share something like this: