I get asked many times what the future holds for Isla and what her capabilities will be. I don’t know the answer. With these newly diagnosed chromosome disorders nobody really knows what the long term prognosis is. The eldest member in our support group is in her 30s but I can’t look at her and get an indication of how Isla will be at the same age as each individual with the same diagnosis, even though they have similarities, are completely different.
I don’t mind if she lives with us forever or is never capable of getting a well paid job. I don’t worry that she may not be able to drive a car. I am also okay with the fact that she may never have children of her own but the thing that scares me the most is how she will cope without us when we are gone. This is the most heartbreaking part of Isla’s diagnosis which causes me to wake up some nights in sheer panic. How will she manage? who will care for her and make sure she has everything she needs? I worry about the burden that will placed on her sisters and how it will affect them through their lives. This makes you feel very vulnerable as a parent. I feel like I bought her into the world, it’s not fair for me to leave her alone.
This is not the way it is “meant” to go. You bring your children up and guide them to be good members of society, get a good education, a good job, do a bit of travel, hopefully meet someone nice and settle down and have families of their own. Then you have done your job as a parent and can enjoy this next stage of your life.
However this unexpected turn of events has forced us to view the future differently. What I have come to realise though is none of us can predict the future. We have an expectation of what might happen but there are a lot of unforeseen events that may happen to anyone. Worrying about them or for me to worry about Isla’s future is not going to help. All we can do is give her a happy life and as many learning opportunities and therapies as possible and and hope that her development keeps evolving. We can put things in place to financially support her and allow her to become as independent as possible. Getting an assistance dog is a step in the right direction.
Being a special needs parent makes you live in the moment and try not to think too far ahead. Partly because it’s too scary but you realise it’s just a waste of time as noone knows what the future holds. We are travelling a completely different road with Isla and we are learning as we go. We have learnt to celebrate small achievements, come down to her level rather than expecting her to come up to ours but mostly roll with it because you cannot change a thing nor would we want to.