“I know the journey is too great for you”

“I know the journey is too great for you”

I don’t really have a plan to write on this “Journey” page on a regular basis, but some days the words just bubble up inside of me & overflow onto my iPad.

When Leah was battling with her illness I chose my words so carefully both for her sake & for the sake of our loved ones reading my posts, as I never wanted to take away hope or cause unnecessary anxiety.

Now there are days when I feel compelled to fill in the gaps & tell the story behind the story.

Some of you leave beautiful comments, saying that my posts are helpful.

I would love to think that the things that I share here could somehow be an encouragement to others in the trials of life.

Hopefully if what I have to say here is not helpful to someone then those people will vote with their feet (or fingers) & just not visit this page.

When Leah was first diagnosed she was given a gift of Rainbows for Rainy Days by its author Catherine Campbell who has buried two of her three children.

This book contains 40 devotional readings which we used in Bristol and then put on our bookshelf.

imageimage

When Leah was admitted to ICU we decided to start using the book again.

On the 6th January Leah was critically ill and I was reading out loud to her from this book before the doctor came to give her a general anesthetic followed by a bronchoscopy and a lavage.

Our scheduled reading for that day was Day 5 based on 1 kings 19.

I was normally very good at controlling my emotions in front of Leah but my voice quivered with emotion as I read Leah the following

God utters some of the tenderest words in Scripture to this broken servant – I know the journey is too great for you.”

The words seemed so relevant to Leah’s situation that I was overcome – concerned that these words might somehow have a deeper almost prophetic significance.

Leah was too weak to open her eyes but she heard the emotion in my voice and reached out her two arms and gave me a hug.

Yes, the journey was too great.

Leah said at the time of her diagnosis that God had a plan for her life and I believe that God’s plan for Leah’s beautiful life was fulfilled in the 16yrs and 16 days that she spent on this earth.

Although the emotional pain of losing Leah is worse than any physical pain I have ever experienced I wouldn’t bring her back because I know that she’s in a better place where her body is no longer broken.

Click here to visit Catherine Campbell’s website

Our God is a Great Big God

Our God is a Great Big God

Leah was more sedated this morning, her oxygen requirements were broadly similar to what they have been, kidney function slightly less good & chest X-Ray no change so today’s nice doctor ( one of my favourite) has decided to go ahead with a bronchoscopy and lavage under general anaesthetic.

They hope that this will enable a more definite diagnosis of Leah’s condition to be made & then they hope to be able to take her off all unnecessary medication and possibly increase the quantities of some medication that might help her.

Results from today’s tests will take 1 or 2 days and they don’t expect to make any major changes to her treatment until towards the end of the week. This procedure is very risky in someone so ill and she may or may not regain consciousness again.

I explained to Leah what was going to happen and then I read to her from Day 5 of Rainbows for Rainy Days by Catherine Campbell. I had some difficulty controlling my emotions & Leah reached out & gave me a big hug.

Just before they put me out of the room so as to set up for the procedure I put on the song “Our God is a great big God” & Leah proceeded to smile & do all the actions while lying there with her eyes closed.

“Our God is a great big God
Our God is a great big God
Our God is a great big God and He holds us in His hands………………………………..
He’s known me and He’s loved me
Since before the world began
How wonderful to be a part of God’s amazing plan.”

No keeping this girl down!

No keeping this girl down!

Today Leah is medically more or less in the same place as yesterday.
The samples that were taken from her lungs on Thursday and were sent to the laboratory haven’t grown anything, so this confuses the PCP diagnosis a little bit and has led some of the docs to suspect that Leah may have pneumonitis, another complication of transplant.
It’s not one I fully understand but I think it could be a type of GVHD (graft vs host disease) or some other kind of auto immune condition triggered by the transplant process.
I have been told that the only way to prove/disprove the diagnosis would be to do a bronchoscopy and a lavage which at present they are reluctant to do, as Leah is so ill.
In the meantime they will continue treating her for everything that they can think of treating her for, including PCP, and wait to see what happens.
Leah is less sedated today, she’s sucking on a Polly Pineapple ice pop, but typed that she would prefer a coke float – no chance!
She also typed “what about maths exam 10th Jan” and I said “Leah you won’t be doing this exam”.
Then she typed “maybe God wants me to go back a year but maybe I could still have lunch & break with my form class Mr M lets them go down town” – going back a year is something that Leah has fought hard against since her diagnosis, but here she is trying to make the best of her situation – no keeping this girl down