Dai-Shanelle
When my baby was born, she let out a cry. That was the first and only time I have ever heard her voice.
Dai-Shanelle is only four-years-old and she has been through so much, she has had seven cardiac arrests and many respiratory arrests. Once I had to bring her back to life, something no parent should ever have to do. I had done the training but no matter how much you prepare, nothing prepares you for that.
Dai-Shanelle lives with chronic lung disease and is at risk of dying every day. We never know if there is going to be a tomorrow, which as you can imagine, is heartbreaking.
Life is very hard for us and we live with horrible uncertainty, but we couldn’t do it without the support of Rainbows. Having Rainbows means we have somewhere that is so important to us. Somewhere that gives us a sense of peace from the chaos of life, medicines and appointments.
Discovering the charity three years ago really was life changing for me and my children – it made a big difference on everything for all of us. If Rainbows wasn’t there, it would be devastating. I simply couldn’t imagine it at all, and I can’t express it in words. And this isn’t just for my family. I am not the only parent who can say that Rainbows is the one place we can easily take our children to.
Our story began when Dai-Shanelle was born at 25 weeks and had a collapsed lung. It was terrifying. I held her for a few seconds and she was whisked away. When I met her properly 90 minutes later, she was intubated with tubes. It was a huge shock.
I spent a long time not knowing what was wrong with her before being given a diagnosis. After four months of being intubated, her throat had suffered so much damage, the tubes had not allowed her throat to develop and it had closed. She now has a tracheostomy.
As well as the chronic lung disease, Dai-Shanelle’s life is made more complicated as she has Global Development Delay and bowel problems. But this is our situation, and it is something we live with every day.
In the early days when she was very ill, I was very uncomfortable with Dai-Shanelle going anywhere that wasn’t with me, but then I discovered Rainbows and I am so thankful I did.
In the big wide world, Dai-Shanelle is a minority when it comes to her disability, but at Rainbows, she is one of the beautiful children who all share something in common. It is somewhere where people don’t stare at her, somewhere where people understand.
We simply can’t do the normal things most children do because it is too risky. But at Rainbows we can. If Rainbows wasn’t there, Dai-Shanelle would never be able to go swimming, enjoy soft play or play on an outdoor playground – this means more to us than most people know.
At the hospice, Dai-Shanelle has learnt so much about herself. I have learnt so much about her too. Without Rainbows I would never have known she loves Play-Doh and other toys she plays with there.
It is the only place where we can go and be away from everything. Dai-Shanelle and her siblings all love Rainbows. There, we have a sense of peace.
I have to be very careful where I take Dai-Shanelle as she doesn’t have a sense of danger and although she can’t walk far because of her lung condition, she is very quick. There are so many things she can do at Rainbows where I feel she is safe. And she absolutely loves it there. At the hospice, I trust the staff with everything, absolutely everything.
Everyone is so friendly and professional, and the nursing care is incredible. I get a real rest; you can’t imagine how much it means for me to not have to cook or to just get a full night’s sleep.
Dai-Shanelle has a lot of surgery to come, and we don’t know anything on her life prospects, but all that matters is she is safe. It feels so comforting knowing we have Rainbows and knowing someone is always there. I love Rainbows just as much as she does.
There are so many things she can do at Rainbows where I feel she is safe. And she absolutely loves it there. At the hospice, I trust the staff with everything, absolutely everything.
