The emergency ambulance was due to collect Leah from ICU at Belfast City Hospital at 9.30am on Thursday 16th January 2014 to take her and I to the N.I. Children’s Hospice where her life support would subsequently be switched off.
The day before that was very busy. It was only late evening on Tuesday 14th January that I had gained “agreement in principle” that Leah could leave ICU to die in the Children’s Hospice, but by Wednesday morning Leah’s medical condition was deteriorating so rapidly that the staff needed to act fast in order to fulfil our wishes.
Thankfully some of my favourite staff were on duty including two consultants who always communicated openly and freely with me. The doctor informed me that Leah may not live long enough to make it to the Children’s Hospice on Thursday and that there was a possibility that she wouldn’t even survive the journey there. He also said that she was too ill to be resuscitated.
I asked close friends & family to pray that Leah would be strong enough to make it to the Children’s Hospice, so as to have a peaceful & dignified death surrounded by those who had been closest to her in life.
A nurse who didn’t normally work in ICU was sent there for a few hours that Wednesday and she offered to make Leah’s handprint for me – I was so pleased. The small things become the big things at times like that.
Although the doctors had been telling me for well over a week that my daughter was unlikely to survive, they still seemed to struggle with letting her go. At 8pm on the Wednesday night two doctors asked our permission to do another washout of Leah’s lungs. Leah had been unconscious since Monday and was in no distress whatsoever.
One doctor carefully explained to us that another possible diagnosis had been suggested and he wanted to do a lavage to look for evidence of this. The downside was that Leah could die during the lavage and we wouldn’t have the hospice death we had planned. The positive was that if they found what they hoped for then they might well be able to save her life.
I had included Leah’s boyfriend Nic and my niece Ruth in the discussion with the doctor. The doctor was very careful to make sure that each of us understood everything. We unanimously decided to let the doctors go ahead. They allowed us to stay with Leah during the procedure so that if she did die, we would be there for her final moments.
The procedure did not harm Leah in any way, but they did not find what they hoped to find. I heard subsequently that the doctors were on the internet until midnight searching for some last ditch means of saving Leah’s life that had not already been thought of.
Predominantly I felt relief that Leah didn’t die during the procedure, rather than disappointment that it hadn’t worked – in my heart I knew that my child was going to die and that my role was to ensure that her death was as dignified as it possibly could be.
People say “How did you do all that?” Or “I couldn’t have done that.” Well if you’d asked me a year ago, that’s what I’d have said too. What I’ve learned is that God only gives you the strength when you are in the situation.
Most of you will have learned the Our Father/Lord’s Prayer as a child and prayed “Give us this day our daily bread.” Every day on this journey I have to rely on God for the “daily bread” of strength and grace for what I have to deal with.
When the the Israelites were in the desert they had to gather fresh manna every day and so do I, by spending time with God every day, even if it’s only for a few minutes. Matthew 4:4
The Israelites didn’t always like the manna – they wanted quail. Sometimes I’ve felt that way too. I would have much preferred the quail of God’s healing miracle in my daughter’s life, but God has chosen to sustain me with the manna of His comforting presence.
Leah and I always said that our “theme song” for the 14 weeks we spent in Bristol was Matt Redman’s song “Never Once”
“Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful”