He Knows the Way that I take

He Knows the Way that I take

 

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As this is a holiday weekend here I’ve had more spare time than usual, so today I decided to take myself to the local woods  for a walk. As soon as I arrived there, I realised that it was during this very week in 2013 that I had walked there with a friend while Leah and Nic had their photoshoot done. Alison Hill did an amazing job of those photos and Leah loved them.

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I was so emotionally fragile at that time (shortly after Leah had been diagnosed) and a walk in the woods with a friend was just what I needed. As all of these memories came flooding back I was glad that the woods were very quiet today. I needed to be alone with my thoughts. As I walked along I enjoyed taking photos of anything that caught my eye:

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When I came to my favourite bench, I sat for a while and studied the photos that I had taken. Most of them were of the path. I reflected on this for a while, then I used my phone to look up Bible verses that mention the word ‘path’. I was somewhat surprised to discover that the word path is used quite often in the Bible. Here are some of the verses I found:

You make known to me the path of life;

   you will fill me with joy in your presence,

   with eternal pleasures at your right hand.

Psalm 16:11 NIV

 

Your word is a lamp for my feet, a light on my path.

Psalm 119:105 NIV

 

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Proverbs 3:5-6 NIV

 

Earlier today I had also read this excerpt from Streams in the Desert which mentions paths:

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After coming home from my walk I looked in my diary to see exactly when I had taken Leah for her photoshoot and what I had written about the event – I had certainly been in a very distressed state that day due to all that was happening. As I glanced over some of my journal entries, my attention was suddenly caught by something I had written on the 5th January 2014 while I was sitting with Leah in the ICU in Belfast City Hospital. Leah’s diagnosis had recently changed from PCP pneumonia to probable pneumonitis. On the 4th January, one of the consultants had taken me aside and had spelled out in words of one syllable what the implications of this new diagnosis were i.e. that Leah was very unlikely to survive. I was still praying and believing for Leah to be healed but as I wrestled with God regarding all that was happening, I had transcribed some words of an old hymn into my journal:

Yea, choose the path for me, although I may not see,

The reason Thou dost will to lead me so.

I know the toilsome way will lead to realms of day,

Where I shall dwell with Thee, O mighty Saviour.

 

There is that ‘path’ word again, all of this serves to reinforce for me the truth of Job 23:10; “He knows the way that I take” and He is with me every step of the way.

 

The Gift that Keeps on Giving

The Gift that Keeps on Giving

Before we went to Bristol I read the daily devotional Streams in the Desert via an app on my mobile phone. I was being blessed and helped by these devotional readings, which were first published in 1925.

While Leah and I were in Bristol one of the ways in which friends and family from home blessed us was with post – lots of it. We were the envy of the other families staying in Sam’s House because most of the post was for Leah and I.

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Every time Leah moved to a new hospital room, her boyfriend Nic helped to arrange her cards so that she could gaze at them from her bed and receive encouragement from them. During the weeks that Leah and I were able to stay at Sam’s House, her cards adorned our room there too.

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One day in August 2013 a package addressed to me was deliver to Sam’s House. The first thing I always try do is guess who a parcel is from. However the handwriting on this parcel was unfamiliar to me.

When I unwrapped the package there was an array of pocket sized items, thoughtfully chosen for my situation; lovely lip balm, pretty tissues, M&S boiled sweets, scented alcohol hand gel – all such necessary items for the circumstances that I was in at the time. Best of all, there was a beautiful leather bound copy of Streams in the Desert. All of this from a “Bible study friend” at home in N. Ireland.

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This little book, along with my Bible, has been a treasured part of my life since then. I would describe it as the daily devotional that reaches the parts that other devotionals don’t reach. Two and a half years on and it continues to be the gift that keeps on giving. I never cease to be amazed by how relevant it is to how I’m feeling or to what I am going through.

Here is an excerpt from today’s reading:

Streams in the Desert 16 April 16

GATA2 genetic mutation

GATA2 genetic mutation

It was the last Thursday in June 2013 and my eldest daughter had just left for America.

By now I was well used to getting calls from withheld numbers so I answered the phone as soon as it rang.

It was Dr C from Bristol Children’s Hospital and I instantly knew by the tone of his voice that something was wrong. He said “We have completed Leah’s gene sequencing and discovered that she has a GATA2 genetic mutation that can cause a familial type of myelodysplasia.”

He went on to explain that the next step would be to test Leah’s brother (the hospital already had samples of his blood suitable for this) to see if he was carrying the gene. If he was found to be carrying the same genetic defect, then his bone marrow could not be used and Leah’s transplant would have to be postponed until a suitable match could be found from the world wide registry.

Dr C said there was several types of GATA2 gene mutations and the type found in Leah’s blood (p.Thr354Met) had never been seen in the UK before. My husband and I also needed gene testing as a matter of urgency.

Depending on which of us tested positive, then they would know who else in the extended family would also need testing. An appointment was made for us to see the geneticist in Belfast on the following Monday.

My world was spinning out of control and I was struggling to breathe.

I thought I already knew how bad this could get.

I had only recently begun sleeping through the night again since Leah’s original diagnosis in April. My concentration and attention span had almost returned to normal.

Now I could once again feel the physical symptoms of shock seep through my body.

Did this mean that more than one of our four children could have a ticking time bomb inside their body?

Would we have more than one child needing a bone marrow transplant?

Would Leah ever make it to transplant?

I needed to rein in these thoughts and focus.

I asked Dr C if he had informed our hospital consultant in Belfast about this latest development and he replied that he had an email ready to send to him but he wanted to discuss it with me first before informing him.

Dr C said that we would know whether our son or ourselves were carrying this genetic defect by the end of the following week.

When we had our first outpatient appointment in Bristol, Dr C had discussed with us some possible genetic implications of Leah’s situation and had put in a referral to the geneticist in Belfast.

I hadn’t really liked the sound of this and had secretly hoped that it would be many months before we found ourselves face to face with a geneticist, listening to potentially more bad news.

Now here it was and I was scared.

I was also relieved, that in the light of what we now knew, that we didn’t have long to wait for further clarification.

Overall, the NHS has been very good to us.

As soon as I got off the phone Leah was by my side “What did he say?

She never missed a thing.

I had left the room to take the call but she had heard me say hello to Dr C. I tried to take the sting out of the news as I repeated the information to her, I tried very hard not to sound like I was in acute inner turmoil.

I explained about genetics and patterns of inheritance and stressed that it was really important not to speak too freely about this until we knew what we were working with.

I said that I understood that she needed emotional support and advised her to choose a small number of close friends whom she could trust, and to confide in them and get them to pray for and with her.

I really wished that I didn’t have to tell my 15 year old daughter about any of this stuff, but the geneticists appointment on Monday was for her, as well as for my husband and myself.

As always Leah appeared to deal calmly with the information.

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On Friday (the next day) our haematology consultant in Belfast City Hospital phoned me. He asked me how I was coping.

I said that I was quite stressed, but that I knew that he and Dr C were excellent doctors and that Leah was in good hands. I also told him that no matter what lay ahead for us as a family, that God would give us strength for the journey. His genuine kindness and concern were very evident.

Saturday morning I was feeling so crushed, defeated and devastated that I just didn’t know how I could possibly keep going.

I halfheartedly opened the STREAMS IN THE DESERT App on my phone that I used every day and read this re Numbers 13:33 – they saw the giants but Caleb and Joshua saw God. Those who doubt say “we can’t do this” but those who believe say “let us go on……for we are well able

It was the most appropriate word of encouragement I could possibly have received.

One of the constant challenges for me in all of this has been the question “Do I really believe what I say I believe?”

If I truly believe in a God of love then what is there to fear?

Realistically speaking though, one of the big problems is the emotional roller coaster you step onto when a life threatening illness enters your life.

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You think you know what life is all about then wham! the roller coaster takes a nose dive and none of your existing strategies or coping mechanisms are anywhere near enough to get you through this new phase in your life.

With each new development along the way you have to learn new coping strategies.

When the roller coaster stops for awhile you might even think that things really aren’t all that bad, but suddenly and with no prior warning the roller coaster car takes off again at breakneck speed and this time the dips are steeper and the rails seem thinner and there’s even a few loop the loops and once again you ask yourself “Am I able for this?

For me the answer to that question has to be “I am weak but He is strong

Monday came and the three of us headed out on the by now all too familiar 70 mile journey to Belfast City Hospital.

The geneticist turned out to be pleasant, friendly and easy to talk to.

We had a list of questions.

He told us that GATA2 mutations are inherited in an autosomal dominant way, so if either Horace or I tested positive then the siblings of whichever one of us tested positive would be considered for genetic testing also. If one of our siblings tested positive, then their children could possibly have inherited the genetic defect too. The best case scenario would be for both Horace and I to test negative.

He also said that someone could have the genetic defect and not develop myelodysplasia, although they could develop other disorders associated with GATA2 mutations.

We asked about Leah’s eggs that had been harvested and he said that her eggs had a 1 in 2 chance of being affected by this genetic mutation and when the time came for Leah to need them she could be referred to Guys Hospital in London for pre implantation genetic diagnosis.

On Friday 5th July @ 10.30am Dr C phoned us with the good news that the Horace, myself and Simon were clear of the GATA2 genetic defect. He said that this meant that Leah’s genetic defect was “de novo” i.e. this was the first time that it had occurred in our family.

I was so relieved to hear this news that I was scarcely capable of coherent conversation. Once again I felt weak and on the point of collapsing, but this time it was for happy reasons.

It was such very welcome news.

The roller coaster car that I was travelling in, glided temporarily into a lay-by.

If God sends us over rocky paths, He will provide us with sturdy shoes

If God sends us over rocky paths, He will provide us with sturdy shoes

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Just found this lovely photo of Leah sleeping with Duckie & Gromit in her bed on the Adolescent Ward in Bristol taken 30th August 2013.
Leah had her bone marrow transplant on 1st August ’13 & by the end of August we knew that it was successful & she appeared to be making a good recovery.
At this stage Leah hadn’t developed any of the side effects/complications from her transplant that were to ultimately blight her health.
We were both on a high, thinking that she had come through the worst and that things could only get better.
I have said so often this past year that I would not want to know the future, because God only gives you the grace to cope when you are in the situation – or – in the words of today’s reading in Streams in the Desert –
Each of us may be sure that if God sends us over rocky paths, He will provide us with sturdy shoes.
 He will never send us on any journey without equipping us well.
 
Does this man have kids?

Does this man have kids?

Just before 2pm they put Nic and me out of the room so that they could start the process of putting Leah on the ventilator.

The Doc wouldn’t let me stay with Leah until they administered the anesthetic that would put her to sleep because he said that he needed space to set up his equipment and I would be in his way – does this man have kids?

We left Leah awake and cuddling “Duckie” & “Bristol Gromit”. I thought my heart was going to break saying goodbye to her but I had to hide my emotions for Leah’s sake.

They said that they will call us back in about an hour. Nic, Leah & I have spent the last couple of hours listening to Leah’s favourite praise & worship music on YouTube; mostly Rend Collective Experiment & especially “My Lighthouse” – verse 2 goes

“In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are my peace in the troubled sea
You are my peace in the troubled sea.”

We also read from Rainbows for Rainy Days written by Catherine Campbell and Streams in the Desert.