What does Isla’s future look like with 2q23.1 Microdeletion Syndrome?

what does the future holdI 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 of our 2q23.1 Syndromes and MBD5 Disorders 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 a 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 be 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 brought 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 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 no one 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.

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

2 thoughts on “What does Isla’s future look like with 2q23.1 Microdeletion Syndrome?

  1. I completely understand what you are saying here. We too have a daughter with a chromosome disorder and she is 12. We were hoping that by now she would be further ahead than she is. It has been heartbreaking to reach this point and know that things are unlikely to change dramatically in the next few years, the time when most other adolescents are spreading their wings and maturing and becoming more independent each day. The gap between our daughter and her peers has grown enormously. But through this difficult realisation has come acceptance too that she is who she is and while we will always worry for her future, we know we can only do the best we can and continue to give her the love and support that she’s always known from us. Isla is very lucky to have two sisters and two doting parents to care for her and you are doing an amazing job as her mother!

    Liked by 1 person

  2. I’m glad I’m not the only one who lies awake at night. I, too, worry who will care for Natalie after us. I don’t want my boys to feel obliged to have her live with them but I do hope they will care enough to visit her wherever she ends up. I don’t want her to be lonely. I see “crazy” old homeless ladies pushing shopping carts and I shudder thinking one day that might be my sweet girl.

    Liked by 1 person

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