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
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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