Balance is a word that keeps cropping up for me, and this weekend I’ve been pondering it a lot. Inevitably when you have a baby whatever tenuous balance you may have achieved is sent totally out of whack by the arrival of a new set of demands. That I was totally prepared for. What I couldn’t have anticipated were the extra requirements placed upon the parents of children with disabilities/special needs/additional needs*
Abi’s needs have rightly dictated so much of our life over the last three and half years and trying to find a satisfactory new balance has been my holy grail. The amount of time we spend at various appointments has affected our life in many ways. Not least while friends with children her age were going to Mum and Baby groups, soft play and similar we were visiting hospitals and attending therapy sessions. When we did make these groups I’d often leave feeling depressed at her lack of progress compared with the other children, or fed up that once again some well meaning individual had suggested we would enjoy x or y group for disabled children.
Lately things have been turning around though. There has been a gradual shift and I think maybe that elusive balance has been struck.
What’s changed? Well, along with becoming more assertive about who we see and when, the biggest thing has been finding three lovely friends whose children all have CHARGE syndrome. Our regular get togethers are good for the little uns, who love seeing other kids who have hearing aids, walkers (back to balance again!) and so on, as well as for the parents, getting to spend time with people who get it. They know the journey and don’t look baffled by terms that usually make the spell checker flag them up with a wiggly red line if you type them.
This weekend Abi and I spent Saturday at Bicton Park Botanical Gardens with one of the CHARGE families mentioned. It was a glorious day, in beautiful surroundings, with a very good friend. Sunday was a beach day with my sister, bro in law and nieces (who are 4 months older and 10 months younger than Abi) Another bright sunny day to make your heart sing, having fun with the kids and enjoying what South Devon has to offer. Fortunately, as I am now battling with paperwork relating to getting a Statement of Special Educational Needs, it was a weekend to remind me what it’s really all about and to make me believe that we might be near something like equilibrium!
(* delete according to your personal preferences, I don’t have any favoured or hated terms among the three)