A few months back a SWAN Mum coined a phrase, that we grew to love. She said how she liked living in her ‘bubble’ with her family. Inside the bubble it was just her and her family, without any outside influences.
We love our living in our bubble too. Inside the bubble, it is warm, cosy and safe. Life inside our bubble suits us. It is just Isabella, Paul and I and of course our Dog Daisy. Inside our bubble, we know what Isabella cannot do, but we don’t dwell on it. We wholly embrace all that she is able to do and we give endless praise to achievements that may seem the smallest of things to an outsider.
Life inside our bubble is peaceful. We know each other’s boundaries and constraints. When it comes to Isabella we know what works and when it’s time to stop. We understand the many faces, the cries and the moans.
We have our routines and quirks, the things that work for us a family. We do things in certain ways because they work. We also do things in certain ways, because for the moment that is all we can do. We take things one step at a time, one day at a time. If it’s not right for us as a family or Isabella, then quite simply we don’t do it.
We float and bounce around in our bubble quite happily, until without warning it suddenly bursts. It is sometimes the smallest of things, something that may seem like nothing, but it bursts the bubble nonetheless. On occasion it may be something that we see. A good example of this was when we were hit with the flurry of snow in January. I saw children of all ages out playing in it. It was the children around Isabella’s age that I was somehow drawn to, watching them run around, throwing and dodging snowballs, being pulled on their sledges and making good old snowmen. I didn’t cry, it just caught me by surprise. You see I never give up hope and think one day who knows, how ever old, that could be Isabella.
Then other times the bubble may burst because of what we hear. Sometimes it was meant for our ears other times it is overheard. People naturally are drawn to children and very often they stop and speak to Isabella. It is usually her involuntary hand movement, (which actually looks like the Queen waving) that gets their attention, as they think Isabella is waving to them. They come over and say hello. They pause and wait for Isabella to reply, then ask her if she is shy. They pause again and ask her her name and smile at her waiting for a reply. Isabella smiles and looks to me and back to the stranger. I then tell them, ‘It’s Isabella.’ Now armed with her name they resume the conversation with Isabella and ask how old she is. I say, ‘You are 3 aren’t you Isabella’. At this point the conversation goes one of two ways, it either ends very awkwardly, very quickly when I explain the fact she is severely disabled and unable to talk. Or it gains their interest and sparks a number of questions; ‘Will she ever be able to walk or talk?’ ‘How did it happen?’ ‘Will she get better?’ and several other questions along the same lines. Like I always say I am happy to answer questions and raise people’s awareness on children with Rare Genetic Conditions. However there are days when these questions affect me more than most, days when I don’t want to answer them, days when hearing myself answer the questions makes me feel a little sad. These days, rare as they are, most definately take me by surprise and most definately burst my bubble.
On occasion we over hear things, a tut or cutting remark. They are not directed at us, but made clear that they were meant for us. The tuts are usually when Isabella is having a melt down and distressed and are usually followed by a comment on our poor parenting skills. Then on occasion it is an unintentional comment that can be cutting. It may be a simple phrase in one of Isabella’s groups, like, ‘Now that all your little ones are walking….’ Now I don’t expect anyone to give Isabella special treatment or draw attention to her, it is merely an example of how simply and unintentionally the bubble can burst.
How and when the bubble bursts can vary greatly. Sometimes I feel that our bubble and other bubbles like ours would burst less frequently if people were made more aware and understood that not all disabilities are visible at first. That there a variety of disabilities out there, some very, very rare and others that still remain undiagnosed. It is something that parents like me are constantly doing through sharing information on blogs like my own, organising fundraising events and talking to passers by when they ask questions. Even with more awareness and understanding from the general public, our bubbles will invariably always burst from time to time, as EVERYTHING around us has the potential to burst them. Some days they will side swipe us and pop the bubble with an almighty ‘bang’ other times the bubble will wobble a little but still continue to float along nicely. But each burst bubble makes us stronger and helps us prepare and deal with the next one….whenever that may be…