Last Christmas was BBGs first Christmas time.
We were so excited to celebrate as a family of 6, I’d brought a different outfit and pj set for each day of the week of Christmas back in early November. I had excitedly brought Christmas presents all the way back in September/October.
Then our world changed. We were suddenly having blood tests as BBG had an undiagnosed condition. We were told it could either be Muscular Dystrophy, Motor Neurone Disease or we could still be left wondering.
Our Christmas was suddenly plunged into darkness. As we had BBGs bloods taken just before Christmas and awaiting the results that we would get in the January.
It is a strange feeling; one of excitement as it is her first Christmas. One of sadness, as the presents I had brought she may never use, one of mourning at what should be.
We celebrated Christmas with grins and tried to put everything behind us, after all my baby didn’t look unwell.
As we celebrated 2017 coming in, we were looking forward to hopefully a negative diagnosis and everything being ok and just our daughter being lazy.
As you know this was not the case. We still have no diagnosis, we still have no clue what’s going on inside my daughter, we are still being told to brace for a terminal diagnosis.
This year we are celebrating Christmas BIG time!
We are having Christmas round our house, we have basically bought the toy store home and all the big kids have what was on their list. They have gone to plays and shows and are being spoilt.
This year has been so hard for the children, they have realised their sister isn’t the same, they have seen us rush to the hospital, they have noted us going up to Great Ormond Street routinely. They have heard Dad and I talking about our fears and when we realise their listening completely changing from sad, scared parents, to parents who have no worry and who can fight the world.
I’m not going to lie, we don’t know how many christmas’ we have left as a family of 6. It could be our last one or we could still have decades to celebrate together.
This Christmas and new year we aren’t as naive. We are aware probably next year BBG will be the same, and we know the likely hood is she won’t have a diagnosis. This New Year we will be looking forward to seeing how well BBG progresses, we will celebrate how wonderful the big kids are coping with a situation no child should be in and yet so many siblings are.
This Christmas Day we will smile and remember how far we have come, we will celebrate the joys and triumphs we have had. We will celebrate the fact we are a family of 6.
Christmas is a time of joy and love and our house this Christmas is going to be bursting at the seams.
Merry Christmas Everyone
A Mum Doing Her Best