to Estella's dear mummy and daddy
I have thought of you every day since I heard about Estella’s story and on so many occasions have wanted to contact you with my condolences, prayers, thoughts and love. I have wanted to contact you because, even though you are strangers, we share a common ground – we live with SMA.
We grieve in different ways for children who are lost. Estella lost her life because of SMA and the pain that you must feel is surely immeasurable. As a parent, you have so many hopes, expectations and dreams for your unborn child: as you nurture their growing bodies within your own, you dream of their future and your heart swells with expectant love. Your child is born and you immediately know unbounding magnificent unconditional love and your future is a “happily ever after” as a family. Sometime later, and I wouldn’t wish this on anyone, a moment comes when you realise that your perfect little baby isn’t quite perfect - because parents are always right! – and doubt and worry fills your mind. You see doctors and consultants and then one day you hear the words that will turn your world upside down “your daughter has spinal muscular atrophy”. For us that was two years ago and as a result Eilidh will live a very different life from the one we imagined for her.
We live each day with SMA “normally”, carrying our burdens differently and grieving for very different lives for our children; but we survive and carry on, taking each day as it comes. You live with the death of Estella and the pain and loss that that brings. Your “normal” is your normal. We, on the other hand, care and live every day with the physical and emotional demands of having a child with SMA and the difficulties it brings to family life. This is our “normal”. Our burdens are in no way the same and I hope that you don’t feel that I am belittling yours in any way because death is surely the greatest of all losses. We learn and grow and we carry our burdens as we can. We do what we can to lighten our burdens.
Our children guide us and teach us about life with SMA. They inspire us to live purposefully, full of hope and grace, passion and determination. I know that you are not superheroes (nor am I!); I know that you are doing what any parent would do to make a difference; to never let their child be forgotten. I know that you are parents who love wholeheartedly, to the stars and moon and back again, and who have suffered a loss so unimaginable. But from this loss something remarkable is happening and you have begun to tackle SMA head on: you are fighting for our children and thousands of others too and I am proud of the work that you are doing to spread awareness of SMA.
I cannot begin to understand - nor do I want to consider that it is possible in my lifetime - what it must feel like to lose a child to SMA, just as I am sure that you would struggle a little to imagine our day to day, but we do have SMA in common and I am reaching out to say that I am so sorry to hear about Estella’s death, that you are doing a truly wonderful job and that I am here if I can help in anyway.
Good luck in London, I'll be with you in spirit...
My love, hope and prayers go out to you
Now & Always
Now & Always