Saturday, February 13, 2010

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.



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












My life

I am a miracle child.

Tuesday, February 02, 2010

Quick little update:

So much has happened ... where should I start first? My oldest son, Justen, got married to Ravyn Martyn-Dow on December 19th, 2009. They have been engaged for almost 2 years so it wasn't a huge surprise but the planning of the wedding seemed to be fast a furious! lol Ravyn's mom, Jaqui, did an excellent job of putting things together. I was included in the plans and we used everything that I had purchased 1 1/2 years ago when the "kids" were first going to get married. After reviewing their financial situation 1 1/2 yrs ago they decided to postpone the wedding. Jaqui provided some beautiful decorations and the cake was beautiful and delicious. It was a very nice ceremony performed by Bishop Gibson and the reception followed right afterward.

Jessica was able to attend her brother's wedding and was even a bride's maid. Brandon and Austin were groomsman and did an awesome job.

I don't have many photos but here are a few from my father-in-law's camera:

Here's the happy couple:

awwww... how sweet!

We are a goofy family! hehe... Justen and Ravyn wanted a silly photo and they got it!

Here's the Taylor and Jensen grandparents with the couple. (Taylor on the left - Jensen on the right)

I can't wait to see the photos from the photographer. I'm sure they will be great!

I knew Jessica wouldn't have the energy to last the whole evening so I had her favorite nurse, Renee, help get Jess ready, come to the wedding with us and when Jess got tired, Karl took them both home and then came back to the reception. I was able to just be the mother of the groom and enjoy my evening. I danced with my husband, all 3 of my sons and all 3 of my brothers... 2 of which had come from out of state to attend the wedding. The evening was wonderful. Two of my friends, Janice and Reesa, came and helped in the kitchen. We couldn't have done it without them too! We are so blessed that Jessica was able to be there and enjoy herself. We never would have believed that she would survive long enough to see her brother get married back when she was in a coma and hemorrhaging when she was 3 years old. What a miracle she is!