God is in Every Tomorrow

“There’s been a slight improvement in her chest X-Ray.” Leah had been in ICU for two weeks and this was the first time that I had heard those words. I was so excited. At last, the miracle that we were all hoping and praying for, was on its way.

I plied the doctor with questions like “When can Leah come off the ventilator?” and “Is she likely to have any residual long term side effects or will she make a full recovery?” The doctor looked uncomfortable as he struggled to answer my questions. He kept reminding me that this was very early days and that I shouldn’t be looking too far ahead.

I was undeterred – this was our miracle – thousands of people all over the world were praying for Leah and I really believed that God could do this. That night, as I walked to my room in the Cancer Centre, there was a smile on my face and a lightness in my step, for the very first time since Leah had been admitted.

The next morning I arrived at ICU and I rang the bell expectantly, but I was asked to wait outside in the corridor. Half an hour later I was still waiting. An hour later I was still waiting. No detailed explanation was being given and the staff on duty were avoiding eye contact with me as they walked past. After an hour and a half of waiting I began to fall apart. A relative of another patient arrived and he attempted to comfort me. After the longest two hours of my entire life, I was finally allowed in to the ICU to see Leah.

Leah’s condition had deteriorated significantly. They wanted to do further tests to see what was going on in Leah’s body but those tests would require leaving the ICU and right now Leah was too ill to be moved. My heart sank. This wasn’t what I wanted to hear. All that day, my emotions were in turmoil. Although Leah was still on the ventilator, there were times when she found breathing difficult and she became very distressed.

That night, after our family visitors had left and gone home, I sat with Leah, holding her hand, while I read and prayed silently. As I did so, the realisation dawned………. “Lord, you’re not going to heal her are you?”

Silence…………

Later that night, as I walked back to my room in the Cancer Centre, my heart was breaking and my whole body felt so heavy. It was like trying to wade through very deep water.

The next morning Leah’s condition continued to deteriorate; her oxygen levels continued to drop and she was struggling to breathe, even with the assistance of the ventilator. While the doctors and nurses worked with Leah, I held her hand and stroked her forehead. Eventually they had no choice but to anaesthetise her as she required a form of artificial ventilation that could not be tolerated by somebody who was conscious. I was very thankful that the staff allowed me to be present to soothe and comfort my daughter while all of this was happening. It was really important to me that the last face that Leah saw before she lost consciousness was that of her Mummy.

Shortly after this a close relative came to visit and I went out to the waiting area to speak to her. She looked me in the eye as she asked “What’s your gut feeling about all of this?” For the first time I verbalised what was in my heart and I replied through my tears “Leah is going to die.”

I had a brief cry and then I gathered myself together, I did not want Leah dying in an acute care setting. I asked the doctor what my options were for her end of life care, he said that I had no options, Leah was going to die in ICU. Then I asked the nurses, my Social Worker, everyone I could find, I told them that I wanted to take Leah home or to the nearby Children’s Hospice. The answer was always the same – because Leah was on a ventilator, we had no options and she would die in ICU.

I was so upset and frustrated, I wanted my daughter to die in peace and dignity, surrounded by our family, but I felt that nobody was listening to me. The next morning I sat and read from ‘Streams in the Desert’ as I always did. The reading for that day was based on John 10:4:

“When He has brought out all His own, He goes on ahead of them.”

Then I read:

The oriental shepherd always walked ahead of his sheep. He was always out in front. Any attack upon the sheep had to take him into account first. Now God is out in front. He is in our tomorrows, and it is tomorrow that fills people with fear. Yet God is already there. All the tomorrows of our life have to pass through Him before they can get to us. F. B. Meyer

God is in every tomorrow

Therefore I live for today

Certain of finding at sunrise

Guidance and strength for my way

Power for each moment of weakness

Hope for each moment of pain

Comfort for every sorrow

Sunshine and joy after rain.

Shortly after I had finished reading I was contacted by a friend from work. I told her that my heart was twice broken; firstly because Leah was dying and secondly because we weren’t being allowed to take her to the Children’s Hospice. I did not want Leah dying in an adult ICU where the average age of the other patients was seventy and where there was minimal facilities for relatives. Leah’s two younger siblings had not even been allowed to visit in the 2.5 weeks that Leah had been there. When Leah was conscious she had pleaded to be allowed to see her younger sister.

My work colleague said that she knew someone who could help us. Within hours Dr H., a specialist in paediatric palliative care from the Health Trust where I work, had driven seventy miles and had arrived in the ICU where Leah was being treated. Earlier in the day Leah’s condition had been stable enough for them to take her for a CT scan of her lungs. The CT scan had confirmed what everyone suspected – the damage to Leah’s lungs was irreversible, none of the treatments that had been tried had made any difference and now it was only a matter of time.

After Dr H arrived we had a meeting with the doctors and nurses involved in Leah’s care. Dr H explained to them how it was both safe and possible for Leah to be transferred to the Children’s Hospice for her end of life care. Dr H was very gentle but very persistent. By the time she was finished, they had agreed to everything. Before leaving, Dr H put her arms around me, Leah’s boyfriend Nic and his Mum and she prayed with us. I felt so comforted.