In the first article of Shalome’s story, we told how expectant mum Emma Harwood and husband Colin were told their new baby would be born with a severe brain abnormality and were given the option of terminating the pregnancy. But the Christian couple agreed the baby was wanted, come what may, and Emma gave birth to daughter Shalome, a name which means ‘Peace.’ As they tackle the difficulties they face during Shalome’s limited lifespan, here are some more selected extracts from Emma’s personal journal…
March 10th – CONSTANT SCREAMS
This picture of tranquility has given us a rollercoaster ride this last three days! Half tempted to post the videos the neurologist wants for his viewing/records of extreme or suspicious behaviour!
It’s been a tough one with constant curdling screams, refusing to sleep (just shy of two hours last night between constant screams otherwise) and near feed refusal (1oz in 28 hours). Seems to have turned a corner with a calmer two hours this morning and settled tonight thanks to our carer Julie (and with a spoonful of medicine).
I’ve kept positive but my heart strings snapped when Faith just flopped in the middle of the kitchen, covered her ears and said: “Mummy, no waaaaaaa. Peace shhhh!” And sobbed her heart out.”
March 25th – SENSE OF PURPOSE
Easter changed my life and Colin’s forever. It’s the reason we have chosen this path… because we believe it’s not us who gives life or takes it away, and because there is more to life than THIS. There is a PURPOSE. Because of Easter… as difficult as it is – we have not given up on Shalome.
It’s been a rough ten days with ‘Peace’ (those who know me dearest know I go quiet when it’s full on). I can’t even describe the rollercoaster right now, it’s raw.
In Colin’s world of engineering, everything has a reason for being. In design – every little piece has a function and is an essential part of the mathematical equation to make something work and fulfil a purpose.
I can begin to get my head around Shalome’s purpose in being given to us; to teach me something? To slow me down? To make us take stock and rediscover the joy in the little things? Because we can do this (on most days!) I can even compute the purpose in Faiths life; to stretch her, to enlarge her capacity to love and care. But Shalome? Surely to enter heaven you have to be created… And she was created in this family. Ouch and hurray all at once!
On this Good Friday I’m grappling with “What is Shalome’s purpose?” People claim she brings hope and peace… What’s the purpose for HER?! We are going to hunt it down with Shalome! Even the darkest night will end and the Son will rise.
April 13th – NURSERY DAY
Shalome’s first day at nursery was yesterday: They ‘only’ rang me 11 times for advice, but I think they nailed it! Big up to Kirklees Council for granting funding so Shalome gets 1:1 specialist care (and we only pay normal fees).
The doolally thing on days like these is Faith and I landed at our normal ranch/toddler group… and everyone eyes me up (i.e. hunting for Shalome) and avoid me, until someone stuttering is like “err… hi, EJ… err, is err… Shalome… err (alive!) OK?”
Me: “Sure, she’s in nursery!” Word spreads, people finally are OK in approaching me!
In other news: we meet with a Children In Need journalist today who is putting us forward for interview with Chris Evans Radio 2, Children in Need four-minute film (only 12 finally chosen) and televised live memorial for Terry Wogan. Their purpose: fundraising. Ours: raising awareness/ethical political agenda.
Hospice respite was this morning for two hours. They brought a teddy donated from ELC for Shalome and circus tickets (no joke!) for us two and Faith (Grandma time for Shalome!). Blessed by the little things, just in that someone has thought of us.
April 14th – TEDDY BEARS
Some of the keepsake teddies made out of Shalome’s first clothes (and Faith’s by default!) being posted to us this weekend. A forever thing (no baby clothes left for any Number Three!)
April 16th – HOW TO TELL FAITH
My ears ring with a question asked by both my health visitor, and a student at Leeds General Infirmary: “How have you explained to Faith the fact her sister will die?”
I hadn’t explained this ‘fact.’ I was just beginning to teach her to embrace sisterhood, and BIG sisterhood at that! Sharing Daddy and Mummy isn’t an easy feat – and we know, we are both the eldest of a tribe!
Others offered wise words: Choose your message to Faith wisely: If you explain Shalome is poorly, sick or ill and then Shalome passes away, Faith will be scared when she’s poorly, sick or ill (e.g. with a cold or chickenpox) that she too will meet her maker prematurely.
Faith calls Shalome “Peace” (she’s learning to pronounce still).
This week, Faith initiated the beginnings of exploring Shalome’s destiny. Faith signs ‘Jesus.’ She knows Peace was gifted to us by Him (or for some of you simply by ‘Mother Nature’). Faith puts her hands on Peace in our morning reflection/mediation. Faith often massages and prays for Peace before sleep and kisses her. Whether you’re on my side of the belief fence, the opposite side of the fence or sitting on its spikes, please join me in explaining to Faith that Peace is on loan. We have her to hold now but she is Heaven’s child.
April 27th – TEDDY TIME
Shalome has been giving her teddies out this week. Faith was so excited she cried!
In other news: Just got a phone call ten minutes ago saying the MRI scanner has broken and it’s all off for tomorrow’s scan. I’m ringing around to cancel ward admissions. Faith’s ‘babysitters’ and Auntie Juju attending. Back to the board of drawing! A little disappointed really. Must be a reason.
May 4th – RESPITE CARE
Shalome receives: two hours of respite at home each week on a Wednesday morning (I take Faith to a dance class) and eight 23-hour stays per year.
Shalome has a key care worker neonatologist/children’s nurse, Charlie, plus access to the hospice doctor at any time, and all other health professionals. The hospice liaise all LOTA (DNR) treatment and care plan updates with ourselves and all linked care workers. We have 24-7 access to advice and are always within 15 minutes of an on-call professional.
Plus, at end of life we have the option of all moving in or having a base at home. We can book use of the hydrotherapy swimming pool, sensory room, music therapy, counsellor/art therapy, sibling support worker…and be involved in any events e.g. Christmas parties or fundraising activities.
Looking forward to setting up parent and baby coffee mornings this month, plus the reflection/prayer room.
Forget Me Not: it will blow out of the water any preconceptions you have of hospices, and fill you with hope. Not everyone is necessarily pro-life, but everyone celebrates every life on whatever form that takes. They bring you back to the basics of “All you need is love, love, dadadadadum!” We have squatters’ rights. It’s our oasis.
May 11th – MEDICAL UPDATE
MRI re-booked for Wednesday May 25th including sedation. Full body scans to follow after these results. Plenty appointments still happen weekly. I’m getting good at being Shalome’s sidekick. Still owed her 12 week injections…she just needs to be cold free!
Shalome has had ‘grab your camera,’ ‘remember this moment’ incredible times of peace and utter contentment this week – it’s been phenomenal – followed by screaming and feed refusal. Still acting the rollercoaster. Still want to read the last page in this book, then go back to this bookmark.
Her eyes really are the windows to her soul, and we can see it… dancing.