Poem for Jessica by Mandy Taylor

Poem for Jessica

By Mandy Taylor (Posted on FaceBook on August 8, 2010 at 5:00pm)

For those of you who don't know, I love poetry. I don't write or read it anymore as often as I should.

This particular piece came to me a few years ago in a dream and wouldn't let me rest until I had written it down. I sent it to Nancy shortly after I wrote it and she asked me to find a copy now. I thought I'd share it with everyone, too. Feel free to re-post or direct others here if you desire.

Always the Princess

My family began with my parents' first son
And continued because they couldn't have just one!
Mama hoped next for a beautiful girl
With celestial eyes and hair she could curl.

So I came, then, in answer to prayer,
Her very own princess, though bound to a chair.
Mom and I play, giggle, and talk
Of all things to come when with angels I'll walk.

"Heaven is perfect, my princess," Mom says
As she irons and smooths my favorite dress.
"There you'll never be lonely or gasping for breath.
You'll have more family to love even after your death."

"I like it here, Mama," I say with a tear.
"I'll miss you and Papa. I'll only know fear."
She says, "Hush, now, princess. You've been there before.
God loves you, as I do, and has blessings in store.

Let Him now enfold you as you fall asleep.
I pray every day your soul He will keep.
Fear not if tomorrow in His presence you wake.
It is one step in a journey we all someday take.

I and Papa will follow when God for us calls.
We'll find you and hug you in His glorious halls.
If He calls you and offers His heavenly rest,
Go, my sweet princess. He knows what is best."

"Our family--begun with your very first son--
Is forever! Forever!" Mom smiles, "Yes, the victory's won.
I love you, sweet princess, do not needlessly stay.
We will see you in heaven, in God's glory, one day."

Everything I Ever Really Need to Know I Learned From Jessica

Everything I Ever Really Need to Know I Learned From Jessica
                                                                                          by Lindsey Rohrbough (my niece)
Most of what I really need to know about how to live, and what to do, and how to be, I learned from my cousin Jessica. Living life wasn’t in the sky diving of things but in the things seen from the eyes of a child.

These are the things I learned: Love everyone. Share laughter. Pokemon can take over the world. Power Rangers will save the world. Disney princesses may have true love but they miss out on so much more. All the pain in the world can’t keep you from trying. A family’s love has no boundaries. No one can tell you, you’re not strong enough. Life isn’t about the things you get but the love you give.

Never take life or anyone for granted. Keep a smile on your face even when things may be tough. Hate no one. Ask others about themselves. Never think yourself as a burden. Keep your loved ones close and happy. Overuse “I love you”.

It’s okay to let go when you can’t hold on anymore.

Remember the love that is seen and felt. Remember the pure white snow in the bed of a truck, taken from a nearby mountain. Remember the simplicity of everything.

Think of what a better world it would be if we all- the whole world had pure unconditional love. Or looked out for each other and shared friendship like Mario and Luigi. Look to the future as not to be the end of the adventure but the beginning of a journey. "

An Amazing Poem by an Amazing CHD "Child"

The following post was shared on one of my heart support groups by Becca's mother. Becca has basically the same CHDs as my Jessica. Becca may be younger but is more "mature" mentally since Jessica is at around a 7 - 8 yr old level. I had the opportunity to meet Becca and her family several years ago when I traveled to a CHD event. Becca and her mom, Chris, have always been a great support and inspiration to me. They have been through a lot of the same issues that we have but also some very different ones. It's always amazed me how the basic same CHD can be so different in so many ways in two different "children". Also, Becca was the FIRST Christmas socks baby. She is the one who started it all. (If you don't know about the Christmas socks story, here's our experience: JENSENLAND and then click on Jessica's journey with CHD ... it is almost 1/2 way down the page but go ahead and read about Jessica's life before that event).

I got special permission to share this post along with the poem with you and it's my honor to do so. I thank Becca for putting into words what I'm sure MY daughter is feeling. This comes on the heels of a very painful & emotional night I spent with my daughter. Here's your tissue warning.

"Written by our 17 yr old daughter Becca born with TOF (tetrolagy of fallot), PA (pulmonary atresia), pulmonary arterial hypertension. She has had 4 heart surgeries, one surgery for a life threatening infection, pacemaker/CD surgery, 20 caths (or more); 44 pills a day, low salt diet, 02 at night, above 3000ft and when sick. Has been evaluated for a heart lung transplant but at this time can continue to be medically managed.

Becca wrote this for a poetry contest through school last week.

*******************************************

MIRACLE CHILD

I am a miracle child

Struggling the first months of my life

Given a 13% chance of survival to the age of 5

Struggling for years.

Today I am 17

I am a miracle child




Life-saving battle scars adorn my body

Changing my shirt, I see the bright pink scar running down my chest

Always a reminder of my yearning for life

I am a miracle child

Fear is part of me

I am afraid when my heart skips a beat

I fear being in the hospital

Alone. . .

In pain. . .

Not knowing. . .

I cry at the very thought

I fear dying

I am a miracle child

I know I am not like most

Valuing life

I celebrate the morning

I appreciate those who love me

And know

Everyday truly is a gift

I am a miracle child

Being a miracle child

Is

Frightening,

Is

Celebrating,

Is

Accepting,

Is

Struggling

Is

Appreciating

Is

My life




I am a miracle child.