I found out at my 20-week scan that Azaan’s brain was underdeveloped, but I didn’t know how that would affect him or what his specific condition was. It wasn’t until he was about 3 weeks old that he was diagnosed with Joubert’s syndrome. It’s very rare and doctors don’t know very much about it. What I do know is that he has had nearly 30 hospital admissions, several operations, deterioration in kidney function and a short life expectancy.
During one of Azaan’s hospital admissions I was called into a discharge meeting full of medical professionals to come up with a plan of how to best care for Azaan. I thought it would just be a discussion about what Azaan needs in order to be discharged and what care at home he would need. It was much more than that, I was told they were referring Azaan to a children’s hospice. A hospice which only takes children with life threatening and limiting conditions. The kidney doctor explained how fragile Azaan was and that he may not be able to have a transplant or dialysis and that the hospice could help care for him.
I assumed a hospice was a place only for end of life and full of very sick children, so when this was introduced to me I was scared. I was hoping to hear that Azaan wouldn’t fit the criteria and I could carry on with seeing dreams I wanted Azaan to fulfil in the future. Charlton Farm hospice agreed with the doctors that Azaan did fit their criteria so we booked a visit.
It wasn’t until our first visit just before the national lockdown in March 2020 that I realised it was very different to what I imagined.
I thought it would be similar to being in a hospital, but it wasn’t; it was like a cosy home. People were there enjoying themselves! I was very taken aback. Charlton Farm is a beautiful place full of love and warmth and staff who make you feel at home. It’s amazing we have facilities and services like this open for families who face such difficult struggles every day. Visiting Charlton Farm was like stepping into another world, it’s set in blissful surroundings, the views were breath-taking, and it was so peaceful.
We had a lovely time swimming in the hydrotherapy pool, walking the beautiful grounds, lots of games, arts and crafts, sensory play, music therapy and cake! We met other families in the same situation and we understood each other before even talking. We were even reunited with a family who were our neighbours in PICU in hospital a month before! 
It was during that stay that Azaan got to experience what it was like to use a swing for the first time. There is an adapted swing which his wheelchair can fit on to. He’s never experienced that feeling before. He bobbed his head and sucked his thumb, which showed how happy he was!
It was during that stay that Azaan got to experience what it was like to use a swing for the first time. There is an adapted swing which his wheelchair can fit on to. He’s never experienced that feeling before. He bobbed his head and sucked his thumb, which showed how happy he was!
Meanwhile, Raihan had a great time with the sibling team and was kept super busy and didn’t go on the iPad all weekend! It was so nice because he has become such a reserved boy and so withdrawn since I had Azaan, and it’s been hard for him to make friends and to socialise. He has become very protective over his brother and worries a lot. At the hospice, he’s a totally different boy. He had so much fun there and made friends with other siblings – it was amazing to see him like that.
That first visit gave me and my boys a chance to spend time together with me as their mum, not a carer, not a nurse, not a teacher.
I witnessed precious moments with my boys playing together which I’d normally miss by fussing over Azaan. I got the chance to take a step back and see moments myself like them having a race on the swings! I never thought I’d hear Raihan say: “Mum, watch me go higher than Azaan!” Memories were made which I will keep forever, that’s what a hospice is all about.
We visited again in lockdown in March 2021 for a resilience stay after Azaan had a tonsillectomy and it was a much-needed break for me. I was able to spend time with Raihan and have some time to myself knowing Azaan was in safe hands and was calm and content.
Life at home is full-on. Azaan needs 24/7 care so I’m busy with him most of the time which means I don’t get to spend much time with Raihan unfortunately. I make sure I put Raihan to bed and we share a bedtime story but we don’t get much time to do activities.
Because of lockdown, we haven’t been able to see my sisters and the boys aren’t seeing their cousins who they would normally see every week. That’s changed Azaan a lot as a person. He never used to mind noise and lots of people around him. He used to like the hustle and bustle and want to join in but now if he hears too much noise he doesn’t like it. I’m slowly trying to reintroduce noise to him as that is what the world is like!
Home visits by the care team meant I could go for a walk with Raihan and get some fresh air
With no vision and limited understanding, Azaan does have lots of meltdowns triggered by noise and unfamiliar voices. During lockdown I’ve had regular phones calls and home visits by the care team from Charlton Farm. Home visits by the care team meant I could go for a walk with Raihan and get some fresh air, which was nice. I felt very confident leaving Azaan with the nurses; they quickly figured out what Azaans likes and needs are to make him comfortable and happy in their presence.
Charlton Farm is a sacred place and very important to families like mine; it’s a small community where we feel normal, no one judges, no one stares. We’re looking forward to being able to visit the hospice again in the future. For now, we will book some day visits where we can all use the hydrotherapy pool and Azaan can have music therapy sessions which he enjoys.