I wanted to call this blog something positive so I chose the piece of advice my mother gave me this weekend as I wept uncontrollably in her arms.
I’m a positive person, always have been. I’m also undeniably ridiculously lucky, I have lived an easy, happy, healthy life surrounded by a family who love me. One night across a sweaty dancefloor in Richmond I met an astoundingly fabulous man who is now my husband and until 4 weeks ago our lives were continuing on the planned route…school, university, single years in London, meet at 25, marry at 30, pregnant 4 months later….
And then out of nowhere an anomoly.
Such an unprepossessing word. Anomoly.
Our baby is not well and to save you the medical details after many tests, an MRI scan has diagnosed Semilobar Holoprosencephaly and Microcephaly. We have been advised that this means quality of life (if she makes it to term which is unexpected) will be minimal and that life will be short and hard.
Adjusting one’s expectations from the day dreams of dolls houseses and dress shopping, to nightmares of baby loss or serious mental illness has been a traumatic process and one which is by no means complete and has led me here to write about our experience in the hope that this will be a blog, which someone starting this journey of uncertainty and fear, at some stage in the future, can read and gain strength from, whether that turns out to be strength to know that even from the very darkest of moments the sun will come up and the pain will ease or a story of coping and dealing with a rare and difficult condition in a child.
I don’t know anything like enough about the condition to know what to expect (this is to be rectified by consultants and paediatrician brain experts over the next few weeks, pending the baby’s continued survival) I certainly don’t claim to be an expert but I will be using this blog as a cathartic venting mechanism so every day will be a school day.