By Carly | Esme and Arthur's mum
After a normal pregnancy and birth I noticed that my six-month-old baby, Esme, was starting to miss typical baby milestones. Esme has now stopped using her hands, has lost the ability to sit up, struggles to hold her head up and is non-verbal.
On Esme’s first birthday her seizures got so bad we had to go to hospital. I was on my own, my family a hundred miles away and Arthur, Esme’s now six-year-old brother, was unable to be with me.
On that day, I opened her birthday cards wishing her a wonderful day. Also on that day, a neurologist told me that she may not make it to her fifth birthday.
I was at my complete lowest.
A psychotherapist at the hospital mentioned Rainbow Trust and asked if I would like to be referred. I can’t explain the relief I felt.
Family Support Worker Michelle’s support opened so many doors and has hugely helped both me and my son Arthur. Before we let the support in, we were just surviving, not living.
With Esme’s complex medical needs and frequent hospital trips I had to stop working and dedicate myself to her care full-time. This has been very isolating and I am constantly worried about finances. Alongside this, Esme’s father and I separated.
Knowing that Michelle is there for us is so important. I can offload everything I am feeling to her. It alleviates the isolation and loneliness.
Michelle supports with whatever we need. It could be just a walk and talk to the local shop to pick up groceries or looking after Esme, allowing me to have some much-needed respite.
My biggest struggle has been the impact on my relationship with Arthur. He needs energy and attention that I cannot mentally or physically give. For a time I could not cope. I was borderline suicidal.
Michelle’s sibling support has been instrumental in ensuring Arthur gets the attention he needs to develop, without impacting Esme’s care. He gets so excited for her visits. Michelle takes Arthur out and organises fun activities for him, giving him some time out of the house where the focus is just on him.
Having Michelle around also gives me peace of mind that, if I ever have to rush to hospital with Esme, she will pick Arthur up from school, help him to understand the situation and make sure he is cared for so I can focus on Esme.
Life before Rainbow Trust was incredibly difficult, it still is, but I now know that Michelle has my back, I can confide in her and she is a safety net for us.
It is only thanks to your donations that my family received this crucial support that we so desperately needed. Thank you.
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