The time we have
By Jenna, Esme’s mum
Esme is a smiling, happy, bubbly little girl, who is full of life and well known for the beautiful bows she wears in her hair. Her personality draws people in. She takes everything in her stride, regardless of whatever’s thrown her way.
When she came out, she was so beautiful but deep down in my heart I knew something was wrong.
She was just so tiny in comparison to her brother and sisters.
Over the first few months of her life, we were really struggling to get her to feed. We went through countless bottles and teats and tried every formula we could find but she just wasn’t growing.
A scan on Esme’s brain at six months confirmed that gut feeling I had. Something was wrong.
Esme was diagnosed with a rare genetic disorder called Aicardi-Goutieres syndrome (AGS). There was no cure.
When we got the news, we felt empty. It was as though someone had just taken our whole world and broken it into a thousand pieces.
Now nine, Esme still can’t sit up, walk, or do the things I would love for her to do like go out to play, invite her friends round, or do things we take for granted every day. But we’ve accepted that.
She is who she is, and we’d rather enjoy the time we have with her than spend it worrying.
Coming to Acorns makes that time special. They have such a close place in our hearts and are like a second family to us.
At Acorns we know Esme’s going to receive the same level of care that we would give her at home.
It’s such a happy place for Esme too and it’s full of smiles. The staff put on lots of activities for the children and plan their whole day around fun, care, and creating memories to last a lifetime.
These memories are something which as a family we will hold on to forever. Without those memories, you’ve got nothing else to carry you forward.
They also bring joy to the siblings which is really important for Esme’s brothers and sisters.
At Acorns we receive help through their dedicated Sibling Service where they can be around other children and professionals who understood what they were going through. It’s made a huge difference.
When Esme is at Acorns, that’s time we can give back to our other children and give them the one-on-one care that they might be missing out on.
I just love Acorns, I really do. And if the time does come and Esme’s time is up, I’m glad that we have them by our side.
Whatever dark days are coming and whatever the future holds, Acorns are going to be there to support me and my whole family.
Until then, they help us enjoy every moment of the time we have with Esme.
More stories inside this issue…
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