Zach and Luca’s mum Faye tells us about the incredible bond between the brothers. Luca has CHARGE syndrome and Zach, along with his family care for Luca.
Faye talks about how over lockdown, Zach has benefitted from online sessions offered by Sense, when his football for example stopped.
Zachary has always been absolutely amazing with his little brother, Luca. As a mother, I couldn’t be prouder of him but, I always felt a pang of guilt that I could never spend as much time with him has I do with Luca. You see, Luca was born with CHARGE syndrome which is a rare genetic condition that affects his vision, hearing and balance. Sense and other organisations have been there for Luca, but it always left me wondering, who was there for Zach.
CHARGE syndrome is a rare genetic condition that affects Luca’s vision, hearing and balance. That period when he was first born was so scary and isolating. A common cold would involve a trip to intensive care. Zach was so adaptable during that time. During each of Luca’s 16 operations, despite worrying about his little brother, he coped extremely well. He knew that plans could change at the last minute and never complained. The first lockdown was very much like those early days of Luca’s life.
It was challenging for all of us but seeing Zach sad broke my heart. His football had stopped, and he couldn’t see his friends or his Grandparents. We had to focus a lot of our time on Luca because his support had stopped. Thankfully, Zach is a wonderful big brother with an endless number of games up his sleeve.
Luca is profoundly deaf but, with the use of his bone anchored hearing aid, he has some hearing and loves music! We use Makaton, a simplified form of sign language, to support his communication. No matter how hard we try, we cannot make Luca smile as much as Zach does. The two have a very special bond which we cannot replicate. Luca also loves sensory play and getting messy which Zach is always happy to help with. Zach never wants his little brother excluded from anything and will regularly push Luca’s wheelchair just to be near him.
The first lockdown was very upsetting for Zach as all the things that he relied on for his own wellbeing, had been taken away. When Sense called to offer online sessions just for the siblings of people with complex disabilities, we snapped up the opportunity. They are the only organisation to provide specific support for Zach through the Sense Connect program. He can be quite shy and doesn’t really talk a lot so we were nervous about how he would take to the sessions.
It sounds like I am being dramatic, but these sessions have really been life changing for us all, especially Zach. The sessions have only been going on for a couple of months and the change we have seen in him has been honestly outstanding. It can be really sad for siblings as they can get forgotten about a bit through no-one’s fault. He was quite reserved during the first sessions but now, he joins in by himself. This is his time and, he loves it.
Speaking to the other siblings has given him so much confidence to honestly express how he feels. No matter how caring his other friends are, speaking to peers in the same situation as him really opened his eyes. It really struck us when, one day, he said that he felt sad that he would never be able to talk or play football with his brother. This took us by surprise, but we had to reassure him that it is ok to feel sad. It is important for him to know that it is not a negative thing to talk about Luca.
That moment alone filled him with so much confidence. Now, he actually chats with us and other people. Occasionally, I have to remind him to let other people speak but inside, I am just beaming with pride. My boys mean the absolute world to me and I love them both equally. The love they have for each other fills my days with wonder and hope. Having Sense and the other siblings there for Zach has changed him profoundly and helped me feel less guilty about the time I spend with him. His only wish is to meet his newfound friends face to face when all this is over.
If you’d like to speak with us more about getting support, visit our Sense Connect page on our website for the referral form.