At least…

People who say phrases that begin with “at least” to a grieving parent really suck balls… unless the whole sentence is “at least there is cake” But it is never “at least there is cake” it is usually “at least you have Dylan” or “at least you can have another baby” or “at least you have Dylan and Evan”. I never ever have a clever comeback to say when people say this to me and thankfully it doesn’t happened very often. I think that “at least” is the worst thing you can say to a bereaved parent, no good can come at the end of that sentence.

What I want to say is that having another child doesn’t make losing one of them ok. I don’t ask people to pick one of their children to lose, of course i don’t because that is a horrific thing to say. I take a lot of comfort in my little chaps but having them doesn’t make the lose of Eilys hurt any less, having another baby doesn’t erase the loss of a baby, there really isn’t any “at least” unless it is about cake.

At least I have Dylan… Yes, I am so lucky to have Dylan, thank you for pointing out how lucky I am. At least I have a wonderful little boy who has lost his sister. At least we have had to explain terminal illness, dying and death to a 3/4/5 year old little boy. At least Dylan knows what physiotherapy, suction machines and NG feeding tubes are. At least Dylan has seen his parents, his grandparents, his great grannies, his uncle and his auntie’s hearts break and have helped them piece them back together again. At least Dylan has had to talk to his friends and classmates about how his sister had a terminal condition and that she died. At least Dylan has been to a funeral. At least Dylan looks through photographs of his very much missed little sister rather than giving her a cuddle before bed. At least… At least…

At least we could have another baby… yes, thankfully we were able to have another baby. At least we were able to make the agonising choice to risk the 1 in 4 change of making a baby with SMA type 1. At least we were lucky enough to conceived quite easily. At least we had the added pressure of deciding to have another baby which a genetic test looming over us. At least we had to wait through 11 weeks of agony after conceiving not know whether or not our baby had SMA type 1. At least I had to go through a very uncomfortable CVS procedure that carried the risk of miscarriage in order to determine if this baby carried SMA type 1. At least we had to contemplate a medical termination of the pregnancy if the results were that the fetus carried the SMN1 gene. At least… At least…

At least we have Evan… Yes, we are so incredibly lucky that Evan was clear of SMA and that there were no other complications during the pregnancy and that he was delivered healthily. At least we have to explain to Evan that he had a big sister that he’ll never meet because she died before he was born. At least we have to explain death and terminal illness to Evan at some point. At least we will have to have Evan and Dylan tested to see if they are carriers of SMA. At least Evan will never meet his sister. At least… At least

Thanks for reading

xx

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