The Skies I'm Under is a wonderfully honest memoir by a mother whose much-loved eldest child is severely disabled. I had the privilege of staying with the family a few years ago and hearing a little of their journey. Rachel has been blogging for a couple of years now and has taken the brave step of telling much more of her story in this fascinating book, which I devoured in a couple of days.
Rachel describes the frightening time when her first, uneventful pregnancy ended with Sammy being born in distress and spending the first few days of his life in intensive care. Then Rachel and Tim brought him home and enjoyed the first couple of months of cuddles, nappies and sleepless nights, only to be told when Sammy was two months old that he had suffered severe brain damage and would be profoundly disabled. It is a harrowing read and Rachel details her family's grief with poignancy and honesty. The reader is unable to hold on to the comforting platitudes they might wish to trot out.
I'm sure it will be ok in the end. No it won't, Rachel is forced to explain to a stranger in the supermarket, he has brain damage.
At least you have help from the local council. Rachel describes the help that is given to care for Sammy overnight, after much letter-writing and many phone calls. This help is necessary, as Sammy frequently wakes up, uncomfortable, in the night and needs to be moved, and he suffers from seizures which need to be quickly spotted and dealt with. But she explains that she doesn't really want strangers in her family home, 'listening to her snoring' (!).
In time you will come to accept the situation. I think I had assumed that, when a child is born with a disability, their family grieves for what their child's life could have been, then accepts things and moves on. It had not occurred to me that the grief would be always there in the background, ready to wash over Samuel's parents at unexpected times. When other people's children learned to walk and talk, things Samuel would never do. When their second child, Jonah, quickly overtook Samuel in his development. When it became clear Samuel was underweight and would need to be fed with high-calorie milk directly into his tummy, as he had such trouble swallowing - another experience, eating, which he would not be able to share. Rachel describes how she dealt with her grief at different times, sensing the presence of God in her life and never losing her faith, but not receiving any easy answers or simple comfort.
Everything happens for a reason. No it doesn't, Rachel asserts on her blog, and I agree wholeheartedly, although I have never dealt with grief like hers. God does not play games with us. Like Rachel and the rest of the family, God delights in Sammy, and because he loves and delights in him, he too wants the best for this little boy.
Tonight will be the longest night of the year. This evening darkness will fall and the wait until morning will be the longest of the year. And then we begin the slow creep back towards Spring, new life and hope. Tonight is a night for staying with the darkness, accepting it, and looking forward to the hope of Spring. Rachel's book makes for uncomfortable reading because she is so honest about the reality of the pain her family has experienced - and yet she knows that that is not the end of the story.
The Skies I'm Under is on sale in the Book Inn on The Broadway, Leigh on Sea, or on Amazon. It is available as an e-book in the Kindle store.
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