We lost our boy six months before lockdown began. Bertie was 4 years old and had gone through a terrible neurological degenerative disease called Batten Disease, which saw him loose the ability to walk, hold his head up, to swallow and to see.
After he died we held his funeral at a beautiful village church. My husband and I carried Bertie’s small white coffin, decorated in garlands of yellow flowers and buried him under a tree, with a bench nearby where we could sit and talk to our boy.
A few days later we had a Thanksgiving service for Bertie, where an overwhelming 200 people celebrated the short life of our precious son.
Of course, we could never have known then what a privilege it would be to be able to come together with family and friends to honour our son’s life like this. To be able to hug one another, to share food together and to weep on each other’s shoulders. To have friends fly in from abroad and to hold us in our grief. It feels surreal to say this now, but we are thankful for the privilege of being able to bury our son and to celebrate his life in the way we wanted.
The grief has been hard on us since the lockdown. There is more time to think about the trauma of the last few weeks of Bertie’s life, more time to realise our awful loss and more time to be alone in our grief.
My husband, our 7 year old son and our faith in God have always been my main source of support and joy. My friends and wider family were also a huge source of support following Bertie’s death. This precious support network would regularly take me out for lunch, helping add structure to my day and above all, giving me something to look forward to. I am still supported with regular messages and phone calls, but it really isn’t the same. There is something invaluable in being held, being looked at in the eye and just knowing they are there, really there with you.
At the same time there is also something to be treasured in the aloneness, the lack of distraction and rushing, which forces me to think and remember. To remember Bertie’s smile of recognition as he would hear our voices when we went into his room and told him it was the morning. To kiss his soft cheeks and brush his beautiful hair. It hurts like mad.
Comments
Mimi and family I had the pleasure in caring for you and your family at home and at Demelza and it was a true privilege to of meet you all and cared for Bertie too, yes he did recognise voices and our Thursday mornings are treasures by myself and colleagues too xx
Mimi I'd love to connect.... We lost our Shalome three months ago, she was 4years old and neurological, just before lock down too. And our Faith too has been our anchor. We have a six year old girl and a now seven month old boy. Feel free to follow our story on 'pray for Shalome Harwood' on Facebook. Home schooling by day, working in evenings.... And my husband is working flat out. So no time to reflect I feel....but we trust.
Dear Mimi, Thank you for sharing your beautiful poignant thoughts. We too lost our daughter in mid September and we too are grateful that we were able to have a real funeral. And the hugs and the support of loved ones. Just had a chat with my bereavement counsellor which is now on weekly phone calls and discussed how lockdown affects grief. Feels like being on a rollercoaster , but the ride keeps getting longer. Also my eldest is away from home and is living his grief and in pain. Miss my daughter Zainab every moment but am thankful we were able to have a funeral and support after. It does feel as if the world is now tasting some of your grief. Sending a virtual hug, Aliya
Hi Aliya, thanks for your comment. We are so very sorry to read about the loss of your daughter. Sending our very best wishes to your family.
Hi Emma, it’s lovely to hear from you and thanks for your comment. We will reach out to Mimi to make her aware of your lovely message. Sending our very best wishes to you all.
Hi Sarah, thanks for your comment. We are sure that your message will mean a great deal to this amazing family.