One year old and so precious | Shalome Harwood

Emma (known as E.J.) and Colin Harwood, of Huddersfield, continue their journal of daughter Shalome, who was born with a severe brain abnormality. The couple face immense challenges caring for Shalome – whose name means ‘Peace’ – but recently they joyously celebrated Shalome’s first birthday.

November 4: Today started off with a bump. I put the milk in the utility cupboard and juice in Shalome’s sterilised bottle! I grappled getting two girls ready (oh and me, too!), wrestled with Shalome’s kitchen sink that I feel I pack each day; unloaded at nursery plus handover of my 2.4 sprogs; ignoring my calls to work on my usual one working day. I did answer this call: One of our Forget Me Not babies was passed to Heaven’s arms yesterday.

After initial shock and water leaking, I thought I was together. Then I dropped something. I can’t even remember what I dropped, but it must have been important. I just boo-hooed!

The treasure of Forget Me Not being our second home is meeting children who become your Forget Me Not family too. We love them, and we won’t stop even if separated till Heaven.

I was honoured to share Shalome’s story today at Forget Me Not to a team pioneering work in all things palliative; blessed that professionals seek so earnestly to provide for the unprecedented. I’m sure I should prep these sessions, but it’s our story… there isn’t much that’s prepared us for that! You know me; where ever there’s a sleeve I’ll put my heart on it! A cherry was put on top of the day when Colin arrived at the end, and as I’d planned, nursery staff landed with Shalome in impeccable timing! I’ll never forget the seas of hands reaching out for a cuddle. Well, she was in her element!

We feel the past two weeks Shalome has deteriorated, but with medication she is managed better. She’s certainly decreased her milk intake and is definitely in need of a PEG/gastro op. This last weekend had a few show-stoppers. In moments of emergency I’m normally Miss On-it, but I’ve now experienced the ‘freeze’ when your body is just frozen to the spot! She is now on regular morphine plus we are trialling sedatives to enable her to sleep.

Today my badge read ‘Emma Harwood, Mummy to Faith and Shalome. Part of the Forget Me Not family’ I wore it with pride! And sneakily (or perhaps not so now) I’ve kept it! Tonight, may we all hold our girls a little tighter.

November 8: Woman’s Own today! Your Shalome is starring in it and signposting for BBC Children in Need and Forget Me Not. Our very own Lynsey from Forget Me Not was the first to collect this morning.

On the read-back before publication they read ‘We were desperate with fear.’ I’d never uttered those words, and asked them to remove it. Alas! It remains unchanged. To be clear as crystal, we’ve never been fearful! We know where our hope is!

November 9: This incredible girl, borrowed from heaven, our little warrior, Shalome is one year old today. What a milestone! We hope to be live on air from Forget Me Not during a small celebration today.

November 19: “I recognise you from somewhere!” I said last night at a prestigious Forget Me Not fashion show event… only to Christa Ackroyd, the former BBC Calendar and Look North TV presenter. I should have done my research!

Colin and I were interviewed by Christa sharing our Shalome story. We see strangers cry, hear some gasps, feel the ‘awwwwws’ and see people suddenly ‘seeing clearly now the rain has gone’; their own worlds put into perspective maybe? After our stint we returned to our seats. The masses’ reactions to our story are always intriguing! A group of ladies next to us took a complete scenic route to get out of the room for the interval, rather than passing us lest they catch our gaze, or even worse have to talk to us! We’re not offended, we even get it; they don’t know what to say, and we don’t mind the U-turn. We don’t know what to say either, particularly when the normal conversation complains about the price of fish. A Shalome puts us firmly in the parallel universe.

Colin re-enacts the ‘scenic route ladies’ in the car on the way home. “Run away,” he said in a high-pitched screechy voice! It’s not often I see him so animated. It’s a lifelong memory, that in itself! Again, held fast by my unshakeable husband and father to our warrior girls. So, don’t worry if you can’t look us in the eyes, maybe we are Marmite; you want to lap us up or yack us out!

Sharing our story gives us purpose, helps us in our wee way to make a difference, and reminds us why so often now we feel or house keys are to unlock that in a parallel world. We are strangely warmed by this feeling, knowing we are not normal… ‘decaf ’ still!