WARNING! What follows is a graphic description of an event that occurred three years ago this month. I post it again in honor of Matthew.




I held my son as he cried. Everything had been said. All the wishes, the questions, and the woulda/coulda/shouldas had been brought out. Everything, every impotent, broken shield, had failed. The only thing left was tears. And even they eventually stopped.

"Matthew," I asked, "What do you think of what's happening?"

He had had a difficult week. Painful from a sleepy gut and beleaguered by nausea and itchiness, he had not smiled in days. His bones stood out in sharp relief, his face nearly fleshless. Blood stained his mouth and dripped in slow, miserable drops from his nose.

"I can't lose," he replied softly.

Wiping the blood from his face with the back of one trembling hand, he whispered, "I can't lose. If I die, I get to go to Heaven. If I live, I get to stay here with you. I can't lose."

And then he smiled.

Oh my goodness. What happened? If you need to talk about it, I will listen.

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www.nightingale.pnn.com
www.angelaposeyarnold.com

Thank you, Angela.

Every now and then I very deliberately compose and/or share "Matthew Stories." This youngest son of mine graced our lives for almost 25 years. The memory of him continues to make me smile - and cry.

Here, in brief, is what happened: At age 6 months Matthew was given a diagnosis of Leber's Congenital Amaurosis. A few years later another diagnosis was added: Senior Loken Syndrome. His mind worked wonderfully well; the rest of him did not. Matthew was blind, profoundly hypotonic, functually quadriplegic, and medically fragile. He had a kidney transplant at age 10. He began to fail neurologically at age 17. No one knew what caused his decline. He asked his doctor for DNR orders. We moved to the coast so that he could enjoy the ocean before he died. He did not die right away. Six years later his intestines quit working. Just like that. And then his transplant failed. He came home with hospice care. We thought he would die within a few days. Ten months later, he shed the body that had served him so poorly.

Three years ago this month Matthew left our home, but not my heart. Whenever a "Matthew Memory" sparkles to the surface, I write it down in his honor.

I hope I have not abused the purpose of this part of Nursing Voices.

Joy

Joy, this part of nursing voices is there for you to use in whatever way you wish. Thank you for sharing your story with us. As a mother of a 17 year old called Matthew myself, a boy who is healthy and happy, I am at a loss what to say next. But my thoughts are with you this month. Please share more of your families' courage on this topic.

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Julie
http://www.lifeinthenhs.wordpress.com

Thank you, Julie. And how nice that you have a son named Matthew. I am happy for you.

I do not know that my family was/is any more courageous than are all other families. Every family knows or will know trouble, toil, and heartache. I do think, however, that my particular little family was enriched beyond words by Matthew's presence. He taught us a very great deal about unconditional love, unwavering trust, determined endurance, and very deliberate, somewhat bizarre humor.

I miss my merry-hearted son. I am grateful for the time we had together. And I look forward to seeing him again one day.

Thanks for reading this missive. If I become really brave I will post about the time I accompanied Matthew during a life-flight transport. It's a funny story - but perhaps only in the eyes of an ex-flight nurse!

Joy

Have you read the book by Don Piper called 90 Minutes In Heaven?
Just a thought. You might find comfort in his experiences.
Angela

__________________
www.nightingale.pnn.com
www.angelaposeyarnold.com

Nope. I have not yet read 90 Minutes in Heaven. Thanks for the referral.

Onward! The best is yet to come.

Joy

Thank you for sharing that *Matthew* story with us! I was taking a quick break while working on what was to be my day off and getting all in my head with resentment and such.... then I clicked on your beautiful, poignant story. Ahhhhhhh I am graced and humbled all at once and totally out of my head now!

Thank you LesleyJoy for sharing your Matthew with me!

DivaRN