The festive holiday can be a triggering time of year for so many, for so many different reasons.
It’s not always surrounded by family, friends and jolliness.
It may be easier for us to share part of our family story, to then relate it to our appreciation of young carers in the holidays.
For us, Christmas has never been how we imagined it ‘should’ be when you become parents and have children. For Rio, a person with intellectual disabilities and sensory sensitives, Christmas can sometimes be too overwhelming and out of his comfort routine.
When he was younger, he really did not like the day, he would want to hide away and not be part of any of it. As new parents it was devastating, the loss of another exciting dream of how you imagined Christmas ‘should’ be when you have children. It became a stressful day.
We know that there are many families in our shoes, that feel and experience similarly.
In all honestly, years ago, we were on the verge of forever cancelling the day of celebrations, and just letting it be another ordinary day; if it had not been for the arrival his sister, Tia!
Tia brought (possibly demanded and controlled) the festive feeling and excitement back to the house; she broke into Rio’s world and shared (possibly forced) her Christmas passion onto him!
Now he is 19, Rio LOVES Christmas with enthusiasm, in a very different way to others but in his way; with a level of gratitude of the togetherness and kindness it brings. He loves opening presents, but has no materialistic care of what is in it (you just have to witness his level of appreciative delight for unwrapping a new plain white tshirt)! He just loves the excitement and magic of it all.
This is truly wonderful, but it still is not a day like it seems for other families that we see on Insta posts around us., whom have children the same age; which all looks care free and fun (yes Dr Ryan Penny, we know, “Do not buy into the lie!”).
In our situation and for many in our shoes, THE day is truthfully often hard work, stressful and tiring; but you still strive to make the dream reality in any tiny way you can. Realistically, any significant “holiday ‘day’” usually means a day with no help or rest, just more work and tension, so it never feels like a break or “holiday”. 19 years on, we still have to deal with changing nappies/accidents, feeding, having seizures and huge meltdowns in public, etc, it’s never relaxed and care free, this brings a level of constant tension - which gets much harder when your child is an adult and you have been doing it for 19 years.
This is not moaning or complaining or being ungrateful, it is just stating a reality for many; as it seems an unvoiced subject, that maybe needs to be heard and shared, so others do not feel alone/isolated in the experience?
Saying this though, there does come a point that you do find your own way, you adapt the dream, create new traditions and accept the reality. I believe we have found our own way and we do enjoy the day, our way; accepting it is very different for us, compared to our family and friends, hence why we keep ourselves to ourselves and avoid big groups, to steer clear of the extra pressure. There is still always a sense of grieving, but acceptance is also liberating when you remember.
As adults and parents we can choose to have that attitude, we have a sense of duty; but what about those that don’t have a choice in this same situation and are equally effected - the children, the young carers?
The purpose of this post, is that we wanted to do a call out for the young carers in the world, the siblings and children that have someone at home with a disability … possibly the forgotten ones by society.
With social media sharing their peers amazing day, it must be incredibly hard to know that your day will never be anything like that. We know the sacrifices and compromises you have to constantly make and accept; the moments of lack of attention; taking on many care giving roles in the day, when you just want to play with your new toy; not complaining, quietly getting on and accepting (possibly better than your parents!); and finding your own magic to hold onto amongst the tension. That is true love!
Young carers are amazing human beings, whom we could all learn from!
Please remember them in this equation when we think of others during the holidays.
With this thought, we wanted to say a personal THANK YOU to our Tia @littlewolf1311 for being the most amazing daughter and sibling. Assisting us when we need your help, often without being asked and with no complaints; for being so patient, sharing, fun, loving & kind with Rio; dealing so graciously in public situations when Rio (or us) just hasn’t coped, that most other teenagers would be horrified and embarrassed about; for your understanding when you don’t always get our full attention when you truly deserve it; and, THANK YOU for bringing back Christmas to our home and to Rio!
We are forever grateful to you!
We hope that the Young Carers of the world have had a lovely festive holiday … we are thinking of YOU!