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My daughter has suffered from immune problems from the day she was born. At the age of 12, she was diagnosed with both Graves and Hashimoto's Thyroiditis. At 14 she had her thyroid completely removed. Over the next four years, she would have other health problems as well. Last December another lump in her neck appeared and she needed more surgery. This time it was a lymph node and missed thyroid tissue from the first surgery. The contents of the lymph node looked suspiciously like metastatic thyroid cancer. To add insult to injury, a review of slides from the original surgery revealed that not only had she had autoimmune disease but her thyroid had contained papillary cancer. It had been missed in the original diagnoses. I had to sit my daughter down and tell her the most horrible news that a parent could possibly ever give a child. She had been so strong over the past six years, keeping up with school, letting go of friends who abandoned her, staying home alot, finding hobbies to accomodate her afflictions. But on that day she wept like a baby.
After that, everything became a big blur for her and me--days caught up in Doctor's phone calls and reports and appointments. And then there was a visit with the Oncologist. Radiation was the best option with one little caveat...a chance, with even one treatment, of permanent leukemia. Things didn't seem like they could get any worse. We did a lot of praying, while we waited for the Pathology report to be finalized. We waited....and waited...and WAITED...ONE MONTH...But in the end we got a miracle! Unknown to us, the Pathology Dept at the hospital where the surgery was performed had sent the lymph samples out for a second opinion, which eventually turned into a third opinion submitted by the DOD Army Hospital in Washington DC. My daughter's case it seemed was somewhat unusual. The result, however, was a complete and pleasant surprise-- the lymph node contained dense infiltrate of antibodies but NO cancer. And there would be no need of radiation. In fact, yearly checkups and blood tests would be all that she would need for the rest of her life. It seemed that the original cancer was self-contained and in the early stages, with no metastasis.
During this time I had also learned of the death of John Travolta's son and the difficulties his family had struggled with because of the son's illness. I knew all too well about caring for a chronically ill child. And the cruel unfairness of it all. On one of my darkest days, I wrote this poem. It is dedicated to all the Moms and Dads and Caregivers who become warriors against the horrible afflictions that rob their children of their childhood and sometimes their lives. God bless you all and may He grant you the same grace that he bestowed upon us...
THE GUARDIAN
You lie there helpless, sleep upon your face
Tubes in your arm, near a heart alarm. Can I take your place?
Why God? I ask. Does this have to be?
Why couldn’t you instead have picked me?
Nurses in and out…You are without a doubt
The star of today’s show, I wish you weren’t though.
Your eyes open and stare up at me
“Momma?” You whisper, your voice a plea.
“I’m here baby girl…” And here I’ll always be.
Your guardian, gatekeeper, your warrior Mom
The one, who protects you, keeps you from harm.
“I’m sleepy…” You moan, and then close your eyes.
“Rest…” I respond. And then with a sigh
I take your hand and wait
And wait…and wait…and wait…
Wait for you to come around
Wait for you to gain some ground
Pull yourself back from this hell
Till then my heart goes on a shelf.
People try to comfort me
With words conferred so flippantly.
There are no accidents in life…
Even when you have such strife…
To everything there is a season…
Well, can you give me just ONE reason?
Why, one so young must suffer so?
Until you can…Will you please GO?
I don’t need that kind of attitude.
And the platitudes.
I need answers, and hope, a plan to make it better.
A helping hand to help me keep it together.
I must be strong to help her along.
To do what’s best and pray it’s not wrong.
So here I’ll wait…
And wait and wait and wait…
Lean on me, baby girl. Take what you need.
I’m not going anywhere. Dear God! I plead
Send me some angels, send me some friends
To help me see this through to the end.
Better still a miracle send
And help this child to fully mend.
Till then I’ll sit right here
Ever so near…
And wait and wait and WAIT…
…And hope my prayers are not too late…..
Love to all,
Pegasus
After that, everything became a big blur for her and me--days caught up in Doctor's phone calls and reports and appointments. And then there was a visit with the Oncologist. Radiation was the best option with one little caveat...a chance, with even one treatment, of permanent leukemia. Things didn't seem like they could get any worse. We did a lot of praying, while we waited for the Pathology report to be finalized. We waited....and waited...and WAITED...ONE MONTH...But in the end we got a miracle! Unknown to us, the Pathology Dept at the hospital where the surgery was performed had sent the lymph samples out for a second opinion, which eventually turned into a third opinion submitted by the DOD Army Hospital in Washington DC. My daughter's case it seemed was somewhat unusual. The result, however, was a complete and pleasant surprise-- the lymph node contained dense infiltrate of antibodies but NO cancer. And there would be no need of radiation. In fact, yearly checkups and blood tests would be all that she would need for the rest of her life. It seemed that the original cancer was self-contained and in the early stages, with no metastasis.
During this time I had also learned of the death of John Travolta's son and the difficulties his family had struggled with because of the son's illness. I knew all too well about caring for a chronically ill child. And the cruel unfairness of it all. On one of my darkest days, I wrote this poem. It is dedicated to all the Moms and Dads and Caregivers who become warriors against the horrible afflictions that rob their children of their childhood and sometimes their lives. God bless you all and may He grant you the same grace that he bestowed upon us...
THE GUARDIAN
You lie there helpless, sleep upon your face
Tubes in your arm, near a heart alarm. Can I take your place?
Why God? I ask. Does this have to be?
Why couldn’t you instead have picked me?
Nurses in and out…You are without a doubt
The star of today’s show, I wish you weren’t though.
Your eyes open and stare up at me
“Momma?” You whisper, your voice a plea.
“I’m here baby girl…” And here I’ll always be.
Your guardian, gatekeeper, your warrior Mom
The one, who protects you, keeps you from harm.
“I’m sleepy…” You moan, and then close your eyes.
“Rest…” I respond. And then with a sigh
I take your hand and wait
And wait…and wait…and wait…
Wait for you to come around
Wait for you to gain some ground
Pull yourself back from this hell
Till then my heart goes on a shelf.
People try to comfort me
With words conferred so flippantly.
There are no accidents in life…
Even when you have such strife…
To everything there is a season…
Well, can you give me just ONE reason?
Why, one so young must suffer so?
Until you can…Will you please GO?
I don’t need that kind of attitude.
And the platitudes.
I need answers, and hope, a plan to make it better.
A helping hand to help me keep it together.
I must be strong to help her along.
To do what’s best and pray it’s not wrong.
So here I’ll wait…
And wait and wait and wait…
Lean on me, baby girl. Take what you need.
I’m not going anywhere. Dear God! I plead
Send me some angels, send me some friends
To help me see this through to the end.
Better still a miracle send
And help this child to fully mend.
Till then I’ll sit right here
Ever so near…
And wait and wait and WAIT…
…And hope my prayers are not too late…..
Love to all,
Pegasus
Last edited by Pegasus on Mon Jul 27, 2009 10:08 am; edited 3 times in total
