Day 165 – Gift of Hope

It was so nice seeing Ellie today for her first Daddy visit in almost a week. So much has changed since last week and I got to witness how much happier she is without a breathing mask strapped over her face. When I arrived she had just woken up from a big nap and I got just over an hours worth of chats, story time and general playing before she fell asleep again. She was very attentive for the whole time and even looked like she was trying to smile at one stage.

Her high flow levels came down another small notch this morning and other than that she was granted a day of rest by the consultant (appropriate for a Sunday!).

It’s a common element of faith that it is a gift to be unwrapped rather than a skill to be earned. My experience of hope this week has been similar. It was only two weeks ago (I think) that we were travelling in to the hospital on a Thursday night due to yet another decline in Ellie’s stats. On the way in we were having conversations such as,

‘what if she never gets better?’ – ‘how would we cope with losing her?’ –  ‘what would her funeral look like?’

In my mind I was even thinking about where I would get her name tattooed so as to always remember her and be inspired by her (and if you know me, I am not the tattoo kind of person). That week, we were very low on hope and we were just in survival mode.

Now, Ellie has yet again turned a corner and the hope we had misplaced has been gifted to us again. Seeing Ellie act less like a critically sick baby and more like her big sister Hannah is so refreshing and we are very much looking forward to seeing the girls play together at home in the not too distant future. This week should hold more answers such as what her upcoming operation will look like and when we will move to the Children’s Hospital.

We may start sounding like a broken record, but…..thank you so much to the family, friends and hospital staff who all held us through another couple of tough weeks. Collectively, you truly are the wave of grace that has carried us through this.


‘Hey Daddy, I’m ready to play now’.



4 thoughts on “Day 165 – Gift of Hope

  1. It would seem Ellie has made sure her unblemished Daddy doesn’t need to get a tatt! Her resilience from day one has been stunning – her constant message to all has been one of hope – don’t even bother to consider the odds, simply push on. I think she just may end up Queen of the World when she grows up – if not that title, then something remarkable…xo


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