I wrote this poem for my daughter last August. Since it has been written, Victoria has been hospitalized 4 times, has had 1 surgery and 1 pending this summer, 10 ER visits, and countless procedures with no end in sight.

VICTORIA MY CHILD YOU JUST TURNED TWO

by Mary Fitz, August 1997

Victoria my child you just turned two
I love you so much, if only you knew

An angel sent you from above
To show me what is means to love

Since you were born you've been in pain
It never ever seems to wane

You're fed through the intestine and breathe through a trach
When is it your turn to be "normal " for heaven's sake

16 hospital stays, 11 surgeries are what you have had
You will have many more which makes me so sad

183 nights in 5 hospitals away from home
It's true, I did not make it up for this poem

You have facial paralysis and your muscles are weak
We are teaching you to sign as you may never speak

You've lived in 2 countries and 2 U.S. states
You've endured emergency room visits with very long waits

The air and land ambulance rides that we have taken
Have been intense and left us shaken

Your home health nurses take excellent care of you
They're compassionate and professional in all that they do

Your therapists work with you every week
To increase your stamina is what they seek

You're an inspiration to all whom you meet
Your strength and courage are a valiant feat

Every day I wake up to say this prayer
Please don't take her today, God, it wouldn't be fair

Is selfish for me to want you near
To comfort and protect you from all you may fear?

Victoria my child being your mother is the best
You've taught me that I truly am blessed


Victoria has a tracheostomy, gastrostomy, and jejunostomy. She has had 2 failed nissen fundo plications, a failed mandibular osteotomy which will be redone this summer, a pylor plasty, and 2 muscle biopsies. Victoria cannot sit up; she is non-verbal, and as you can imagine- a very special little angel! She is still undiagnosed; however, the doctors feel it may be a mitochondrial disorder.

Mary Fitz, Vmf2@aol.com


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