Her pain breaks my heart | Shalome Harwood

Shalome
Shalome with her dad, Colin

Emma (known as EJ) and Colin Harwood have been sharing their journal about daughter Shalome, who was born with a severe brain abnormality, with our readers. Shalome – whose name means ‘Peace’ – gives the Yorkshire couple immense challenges but their love is unconditional. Here, Colin gives a father’s account of an episode in Shalome’s life…

Since we’ve been trying to wean Shalome, she’s not taken kindly to being spoon-fed.

There are two schools of thought (mine or EJ’s).

  1. She’s unable to coordinate swallowing from a spoon. Or…
  2. She’s in so much pain with her gastro-complications that she’s refusing to allow us to feed her the ‘normal-standard-child’ way.

As with this whole journey, each day is one of discovery.

From day one we’ve explored Shalome’s capabilities with feeding her milk – something the neurologist at Birmingham Children’s Hospital told us was unlikely to happen – although she struggles, she does consume, with a little help from medication.

Part of me thinks if we’d have chosen intensive care, would the doctors have inserted NG (nasalgastric) tubes as a standard procedure for holoprosencephaly diagnosed babies? Possibly! So would we have ever known if she could have taken a bottle? Possibly not.

I might add that we’ve been told that Shalome is the only baby in the UK with her condition that doesn’t have an NG-tube for feeding. I can’t make my mind up if this is remarkable, or whether EJ and I have a tolerance and patience threshold higher than Mount Everest or we’re just crazy.Shalome

The subject of the NG-tube will almost be guaranteed to be brought up in conversation soon. We’ve not decided whether to accept or reject the proposal, so we may have to adopt the delay tactic I often use in business meetings that are going to cost the client a lot of money: “I’ll have to go away and think about it.”

Please keep us in your thoughts and prayers, the biggest prayer point being Shalome’s feeding and gastric issues.

EJ has often described Shalome’s crying as ‘blood-curdling screams.’ I can’t sugar-coat it I’m afraid; there is no other way to describe it. It breaks my heart every time this innocent bundle turns purple and loses her breath through sheer desperation of wanting to get rid of the pain.

It’s not often I write about this, mainly because I’m worried of writing something I may regret, but one thing is for sure, I’ll never put myself in a position where I’ll regret that I didn’t try hard enough with Shalome.

Suck it up! It could be worse, life goes on! Keep smiling.

We cherish having Shalome to have and to hold, we know the fragility of what we cuddle. We pause stunned at the future… that with this bundle (of joy?) looks oh so different. My hardest part in all things Shalome is the tug of war in my inner self of our dreams and ambitions (Overseas in two-four years!) versus the reality of a full-on life with Shalome.

When I have expressed this recently I have been surrounded, as in a tempest dream, by comments recently of “Life never turns out the way you plan” or “Man has his plans, and God has his!” I’m still wrestling with this notion. Did we get our life mission so wrong? Was our destiny aim so off the mark? Or is this but a test to make it no matter what? Resolved to give now our all and trusting for the future. Faith means you have Peace (Shalome) even when you don’t know all the answers.

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