“I am a Shooting Star Children’s Hospices mum. A few years ago, that would have meant very little to me. Today, it means I belong to a group of parents with a life-limiting condition and we will probably have to say goodbye to our children way too early. But it also means we are very lucky. Shooting Star Children’s Hospices is helping us make beautiful memories along the way and, when the time comes, we won’t be alone.”
Tanja and husband Omar are parents to Max, four, and Amelie, six. “When Max was born, we soon realised that something wasn’t right,” explains Tanja. “He was floppy, lethargic, poorly and unresponsive. Things quickly went from bad to worse. Max spent his first year on the edge of life, he was not expected to survive.”
Max has severe combined immunodeficiency, which causes a weak immune system, making it extremely difficult to battle viruses, bacteria and fungi that cause infections. “It is hard to explain what happened to us in this time. Max’s sister was only two and my husband and I had no family support nearby. It was ripping us apart. We were not coping with the lack of sleep and suddenly living between paediatric intensive care units and hospital wards, while taking care of Max’s sister as my husband went back to work. It was a terrible time. It took us down a very dark road.
“When Max was five months old, a lovely doctor referred Max to Shooting Star Children’s Hospices. Initially that was a blow. Although we knew Max was very poorly, this was accepting Max could die. Even more so, it was saying out loud that Max would not survive, that eventually, whatever he had would get the better of him and rip him out of our hands.
“At first I was against it. I was scared. But then we met a lovely nurse from Shooting Star Children’s Hospices. She met us in hospital and she listened, asked me how I was and how we were coping. It felt like a huge rock falling off my shoulders – somebody cared. She was going to help us with it all and support us. And even if we would have to let Max go, she would be there and support us through it. I can’t quite express what this was like. Suddenly, I wasn’t so scared anymore. I wasn’t going to be alone with all of this. In the coming months, she helped us get some sleep. She came and looked after Max, so I could play with his sister, Amelie, or just have some rest. We talked on the phone and she helped us to deal with everything.”
At nine months, Max was ‘stable’ for the first time. “Max was able to come home – finally. He was fragile and his health was volatile. To be honest, I was scared to go home. Scared I wouldn’t cope. What if he died on me? It was tough. We stayed at the hospice for our first week away from the hospital. Max was taken care of by the superb team and we could rest. I slept for the best part of two days. We were safe and it was time to recharge our batteries ready to go home to the reality of sleepless nights and permanent worries.
“Having a life-limited child with complex care needs brings many challenges. The lack of sleep is only a very small part of it. We worry a lot and we try to give Amelie as normal a life as possible. We struggle to keep our little family going, to pretend everything is okay. We struggle to make it to all of Max’s appointments while taking care of his therapies, his medications and his social needs. We struggle with Max’s physical disabilities and the boundaries this brings with it. We struggle with the responsibility on our shoulders and the fear that comes with it. The truth is we can’t do it on our own.
“Max is suffering from several life-limiting conditions but, with the help of Shooting Star Children’s Hospices, we are managing. Shooting Star Children’s Hospices is so much more than just end-of-life care; it is our hub, our safe space. We can meet up with other families in the same situation, talk about how we feel and give each other support. We have a Hospice at Home nurse who is there for us. She helps me when I am not coping, she listens, writes letters, attends difficult meetings with me or simply comes to my rescue. She gives me advice when I have questions.
“Our daughter goes to siblings’ days and now knows other children in a similar situation. They have fun and have a space to talk about their siblings and how they feel. And, on top of that, Shooting Star Children’s Hospices offers us respite. This means sleeping through the night from time to time or spending a day with our daughter, going someplace where the wheelchair or Max’s needs do not allow us to go.
“The team at Shooting Star Children’s Hospices has a unique understanding of our situation. They accompany us on our journey, help us to make happy memories and be ready for when the time comes to say goodbye. There are numerous other respite centres for special needs’ children in Guildford, but Max’s complex care needs do not allow us to send him to those. It is a sanctuary, our little island of happy. We come here as a family and enjoy some happy hours, make memories and forget what is to come. We have learned to take it one day at a time and I cannot thank Shooting Star Children’s Hospices enough.”
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