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Grace: My Mother's Fight Against Pulmonary Fibrosis

I lost my mum eight months ago.

Shedding A Tear For Mum, for Grace, photography by Shelley Ensz I lost my mum eight months ago, after a two-year fight against pulmonary fibrosis. This dreadful disease is very rare and the patient suffers greatly.

When the patient is your mum, you just wish you could wave your magic wand and make it go away. Yet, she fought right up to the very end, and the hope that one day she would get better kept her going. Unfortunately, for her family, we knew it was terminal, and that there was not going to be any getting better.

Mum first started feeling breathless about three years before diagnosis. This got worse after three lots of flu in one winter, when her breathing was laboured and difficult. Six weeks in a more specialised hospital, a hundred miles away from home, confirmed the diagnosis.

A diagnosis we got, but no explanations, no reasons as to why this beloved woman had succumbed to such a dreadful illness. An illness you would not wish your worst enemy, let alone your mum. An oxygen machine was fitted at home, medicines prescribed, changed, prescribed and changed, doctors giving different thoughts on the illness. Confused — so were we!

Mum gradually got worse over a period of eighteen months, the steriods blew up her body and her face, and a woman so proud of her appearance became ashamed of it. Each chest infection meant an admission to hospital, antibiotics, rest, then home. Each lot of antibiotics meant that her body was becoming immune to them all, until she could no longer bathe herself, or go to the bathroom. Albeit slowly and with a struggle, and hospital beckoned for her final stay.

We live seven hundred miles away from her, so our final visit, three weeks before she died, was exceptionally precious to me. She still was fighting, her eyes lit up every time we walked into the room, and she told us she loved us and we her, but she never said she knew the end was near. The last goodbye was painful, but we told her we'd see her in eight weeks. I saw her on her deathbed three weeks later, after two strokes caused by her immobility.

I told her I loved her and she squeezed my hand; she knew I was there, and I hope it gave her the comfort it gave me. She died one and a half hours later. No more suffering, no more oxygen, no more pain, no more mum. How will we live without her? She brought me up to be strong, and strong I will be, but mum, I love you, and will miss you forever.

I wrote this poem for her the night before she died:

Til We Meet Again, Mum

White flowerI love you, Mum, I am sure you know
But now it's time for you to go
I have seen you suffer, I have seen you so ill
But God's taking you now to a place where you will
Find peace at last and no more pain
I love you Mum, 'til we meet again.

Your daughter,

Grace

To Contact the Author

Grace
(Email withheld by request)
Story posted 1-17-02
Story edited 9-1-03 SLE

Story Artist: Shelley Ensz
LINKS
Survivor Stories
Pulmonary Fibrosis
Go to Greg: Diffuse Scleroderma and Lung Transplant Patient
 
 

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