Grief has no Shortcuts

In years gone by I used to tell people that “when Leah went away on holidays, our household fell apart“! This was because Leah was so organised. For any planned event or outing, Leah made out a tick list and followed me around the house asking “Mummy have you done this?” Or “Mummy have you got that?”

I too can be a very organised person, or at least I used to be before grief set in. Grief affects my concentration and attention span, but most especially my time management skills – it seems to take me ages to get anything done.

Simon was going to camp early yesterday and there was no chance that he would do his own packing. So my task for Saturday was to pack for Simon going to Faith Mission Camp. A simple task you might think?

Last year before Leah went to Bristol in July, she wrote Simon a list, so that he would know what to take to camp with him in August while we were away.

For the camp Simon is going to I am supposed to send a tub of homemade buns with him to contribute to the catering – Leah usually made those, other than last year when none were sent.

Leah absolutely loved going to camp. When she was of Primary School age she went to the same camp that Simon is now at – Faith Mission Camp in Portadown. Then as she got older she went to C.E.F. (Child Evangelism Fellowship) Camp in Rossnowlagh in Donegal. My older daughter went there too and trained to be a leader. Leah had one weekend in 2012 as a junior leader which she really enjoyed. Her plans for 2013 were to attend “Training Week” in June to do leadership training and then to be a leader at camp in August last year.

However instead Leah was diagnosed in April 2013 and started treatment in July. Leah’s burning ambition was to work with children and young people. She planned to train as a youth counsellor when she left school.

This was Leah’s list that she made for herself when she was going to CEF camp in Rossnowlagh in 2012

Packing for Simon to go to camp on Saturday seemed like a mammoth task. There was my grief at having only one teenager going to a faith based camp this year instead of two. There was my grief at not having one of Leah’s familiar tick lists in front of me. There was my overwhelming grief at the complete absence of Leah’s voice checking up on me.

Thankfully Miriam came and helped me to make the buns for Simon to take with him so that was ok.

What should have only taken a few hours took me the entire day. I’m learning that grief has no shortcuts though. There would have been no benefit to some helpful person coming and doing that task for me – every aspect of our loss has to be grieved, even though the pain at times is awful.

Tonight I’m planning to go to New Horizon in Coleraine. I missed it last year because Leah and I were in Bristol. The last time I went there was when I brought Leah home from having spent the week there in 2012. I clearly remember parking and sitting with Leah in the car outside our house, unable to get a word in edge ways because Leah was so excited about everything that God had done in her life that week.

When Leah was leaving CEF camp in 2012 her dorm leaders gave her a little notebook and wrote this in the front:

Leah then took this notebook to New Horizon in 2012 and wrote six pages of notes – here’s an extract:

I’ve shared this song before but I’m going to share it again because it’s one of many that I regularly come back to:

Sovereign Over Us

By Aaron Keyes, Bryan Brown & Jack Mooring

THERE IS STRENGTH WITHIN THE SORROW
There is beauty in our tears
You meet us in our mourning
With a love that casts out fear
You are working in our waiting
Sanctifying us
When beyond our understanding
You’re teaching us to trust

Your plans are still to prosper, You have not forgotten us
You’re with us in the fire and the flood
Faithful forever, perfect in love
You are sovereign over us

We heard you were coming 💝

Today I went to visit a very dear friend on the Sperrin Haematology/Oncology ward in Altnagelvin Hospital. Leah had two admissions there prior to going to Bristol for her transplant and was really well looked after.

As I walked through the door of the South Wing of the hospital today my tears started flowing and I wondered if I had made a big mistake in going there.

As I walked up the stairs and down the corridor, everything was just as I remembered it, all the familiar landmarks, and everything reminded me of Leah.

By this stage I was in no fit state to visit anyone, but felt I couldn’t turn back as my friend was expecting me.

I was relieved that the entrance to the ward was open as I wasn’t capable of speaking into the intercom. As I approached the nurses station a lovely nurse turned to me and said “We heard you were coming. This must be so difficult for you. We remember Leah.”

Then she took me away to sit in a quiet corner and we talked together about Leah’s illness journey and I showed her some photos of Leah taken in Bristol and after that at Christmas.

The nurse brought me a drink and when I was composed she took me to speak to the ward sister and we reminisced about Leah sitting her GCSE modules on the ward and some other happy memories.

Then I went to visit my friend and had a lovely time with her.

Sometimes there is healing in facing painful memories head on and being enveloped in the loving care of those who God provides to minister to us on this journey.

The Health Service is far from perfect and I have seen the good, the bad and the ugly, but today I thank God for the very many kind, caring staff who made Leah’s and my journey that bit easier because of their compassionate hearts.

A time to be born and a time to die

In Bristol Children’s Hospital the cleaning staff always knocked and asked our permission before entering Leah’s room to clean it. If we indicated that it wasn’t a good time they would go away and came back later. If Leah and I were snuggled up together in her hospital bed watching a DVD then the nursing staff often apologized for intruding. Shortly after Leah was admitted to the Bone Marrow Transplant Unit there I was quite taken aback when our very senior haematology consultant even apologized for disturbing us when he came to see Leah!

However once Leah became an adult (i.e. over 16) and was in the adult ICU in Belfast City Hospital, there were times when I felt like the intruder. Now I was the person on the outside knocking and asking permission to enter. I hadn’t changed but the environment had changed, policies and procedures had changed, and my heart was breaking.

In Bristol when Leah was ill I provided all her personal care, showered her, dressed her, changed her bed linen etc. The nurses administered her medication, worked the pumps, nasogastric feeds etc. It never occurred to me that it would be so different when we returned to adult services in N.I..

On Thursday morning 2nd January I could see that Leah’s oxygen levels were dropping and that she was finding it increasingly difficult to breathe. I knew that putting her on a ventilator was the likely next step. I was asked to leave the ICU for doctor’s rounds so I went and had breakfast in the hospital cafe – I liked their warm and frothy cinnamon milk.

Shortly after my return to Leah’s side-room the consultant on duty called me into a separate room. He explained that Leah was critically ill and that they would have to put her on a ventilator to help her breathe. He said that this would entail giving her a general anesthetic & keeping her fully sedated for at least the first 24hrs or maybe more.

He said that because she was so ill she might not even survive the process of being put on the ventilator. He also said that she needed some essential blood products before being ventilated in order to reduce the risk of death and these weren’t available yet so it would be 1-2 hrs before they could go ahead with the procedure. I knew that this unfortunate delay could further increase the threat to her life.

I asked the doctor if I could stay and hold her hand until the general anaesthetic had been administered and she had gone to sleep. He replied that this wasn’t possible as he had equipment to set up and I would be in his way. He continued talking, explaining other aspects of her situation, but I couldn’t concentrate. My stomach was churning. My child was possibly going to die. He was going to put her to sleep and I couldn’t be there to provide reassurance and comfort until the anaesthetic took effect. The last face my child would see would be his face and not mine.

I wanted back in to see Leah, knowing that every moment was precious, but right now my breakfast was threatening to make a reappearance and there was no relative’s toilet in ICU. I excused myself and made my way through the convoluted set of corridors until I reached the public toilets in the hospital foyer.

Thankfully the disabled toilets were available – I didn’t want an audience. I locked the door and gripped the sink as the walls spun round me. I closed my eyes and tried to slow my breathing. This was awful – just awful.

About 20min later I had finally regained my composure and could return to my daughter. I sat and read to her and prayed with her and we listened to her favourite Christian music on her iPad. Due to some difficulty in sourcing the very specific blood products Leah needed, it was a couple of hours before the doctor came and put us out of the room. During this time of waiting, Leah’s oxygen levels continued dropping and the machine that was monitoring her stats was frequently alarming. I wondered at one stage if Leah was going to live long enough to even go on the ventilator.

The Bible says in Ecclesiastes 3:2 “There is a time to be born and a time to die” and thankfully this was not Leah’s time to die.
On Monday 13th January Leah’s oxygen levels were again dropping and she was again finding breathing difficult although this time round she was already on a ventilator and she was awake.

Thankfully a different consultant was on duty – one who didn’t mind me being with my child & giving her comfort while he worked through the crisis. He tried many different approaches to help her with her breathing difficulties until the only option left was to fully anaesthetise her for the last time. While all of this was happening I comforted her by holding her hand and stroking her head. The last face that Leah saw before going to sleep was mine and it was a face so filled with love for my daughter.

Leah remained fully anaesthetised until she was transferred to the N.I. Children’s Hospice on Thursday 16th January to spend her final moments in peace and dignity surrounded by the love of our large extended family and a few very close friends.
It’s so hard to explain how in the midst of the terrible sadness of my daughter’s death I still feel an incredible sense of God’s perfect timing.
Another song that Leah and I loved comes to mind, it’s “Sovereign Over Us” by Aaron Keys
“There is strength within the sorrow, There is beauty in our tears
You meet us in our mourning, With a love that casts out fear”