Maggie, one of Jennifer Trust's outreach workers, visited today.
A lovely, friendly lady with a wonderful smile...
We welcomed her into our house and, quickly, I felt as if I had known her a lifetime.
I feel as we have lived with SMA for a lifetime already: this disease, this condition is part of our family now and we still have a lifetime of Eilidh and SMA ahead of us.
Maggie told us a little of herself and I felt more at ease.
She talked of Jennifer's Trust and SMA - 100 new cases a year, approximately thirty of those children diagnosed with grade 2, and only perhaps ten to twenty families throughout Scotland living with SMA today. A niche club no less!
And then we started with our questions - none of which were deemed too silly, too daft to ask. We were free to talk about anything and eveything. Our minds started to race and twirl and whizz to the point of overload... Wizzybugs, wheelchairs, beds, sleep systems, hoists, cars, adaptations, dla, motobility, grants, charities... So much to think about, a future to plan...
Maggie was able to summarise families worth of experience in an easy to follow way - not too much information but just enough for now, to enable and empower us to move forward over the next few days and weeks.
And I know that she will be there for us, a telephone call or email away; there to answer questions or research things for us, a shoulder to lean on, a listening ear, and I am grateful to Maggie. I am grateful to Jennifer's Trust and I am grateful to those who have given money to the Trust who brought Maggie to us. To our home and family.