Although this has been an incredibly challenging time for the family, Louise explains how they have been trying to stay positive and make some happy memories together.
“Curtis has CHARGE syndrome and complex needs. He is tube fed and has complex heart and respiratory problems, which have led him to rely on a tracheostomy and a ventilator overnight to keep his lungs fully inflated.
Curtis is under a large team of professionals, from cardiologists to dieticians and many others. We have appointments most weeks with at least one of his team. He also has a large package of care to support his needs at home. Curtis has been accessing Little Harbour for respite and support since it opened, and prior to that we spent time at Little Bridge House.
For us, COVID-19 has had a massive impact as Curtis is being shielded from the virus, preventing access to all support networks that we rely on.
Social isolation is not new to us, or many families like us. We are used to long hospital stays far from home, long periods of illness preventing normal daily activities, being unable to attend school due to health needs and sacrificing social interactions due to care needs. But when you are used to being supported by so many health care professionals for support with health and care needs, it’s not just a feeling of isolation, it’s a feeling of massive responsibility, fear and vulnerability that I have not experienced before.
Due to Curtis’ ventilator dependency, he is classed as extremely vulnerable. But he is also a high-risk person for spreading viruses due to the aerosol producing effect of tracheostomy/ventilator care. Therefore, his wonderful Care Team now have to wear the highest level of personnel protective equipment whilst in his room. This has been strange for Curtis, waking in the night to see masks, visors, gowns, gloves and just a set of eyes to try and identify. Being deaf, Curtis watches facial expressions so for him it is hard and frightening. It is also a strain on the Care Team but they are fantastic and happy to do whatever is needed to protect Curtis, big ‘high fives’ to them!
We have had to continue his night time care as, being a single parent, I am unable to stay up and provide the level of waking night care he requires to keep him safe. But I have stopped all day time care. So, days are full on, trying to meet his health needs as well as keep him stimulated, happy and safe and provide some home learning for his brother. Saying that, we are making lots of happy memories and trying hard to stay positive.
Clinic appointments have all been cancelled or are carried out over the phone now. For us this is actually a good thing as Curtis really struggles with his anxiety when visiting the hospital, so we are grateful to be able to do this. Through the government’s shielding support, we have received food parcel deliveries when we have needed them and are now able to access online shopping deliveries again. We have had regular phone contact from the team at Little Harbour as well as many other professionals who support Curtis.
Not being able to leave the house is hard for us all but we are adapting and finding the positives in that (no piles of coats and muddy shoes to be seen here!).
One thing I am very aware of right now is the amplified affect for Oscar of having such a severely disabled brother. He is 6 years old and I don’t like to think of him as having any caring role other than that of any sibling. But he has really stepped up during this time. He calms down his brother when he is upset, he runs around getting Curtis what he asks for, he has seen a few sights no 6-year-old should have to witness. ‘Lessons’ frequently come to an abrupt holt when Curtis needs care and he has to spend large amounts of time entertaining himself while I deal with Curtis or Curtis-related phone calls. He makes him laugh when he is sad, he always knows what he wants/needs. He never questions his role or needs asking twice. So, hats off to Oscar and all of the amazing siblings like him.
The hardest part is the not knowing. Will life for us be like this until a vaccine is available? Will we have to accept he cannot be protected from the virus and try to continue making his short life a positive one? How and when will his brother be able to return to school and how can I help him keep up with his peers when they are in school and he has to stay home to protect his brother? So many questions.
But as a small family unit we are strong, Curtis has taught us resilience that we never thought we’d need.
When you have experienced such fear and prayed so hard for your child to just make it through the next minute, hour, day... how can we not just be grateful for what we have right now.
Through our hospice journey, we have met so many amazing families who would do anything to have their precious children at home with them now. So for them, we will make this time positive, take each day as it comes and remain thankful for what we have."