Monday, February 9, 2009

Tomorrow's a Big Day!

Over 200 people are gathering in Washington DC tomorrow to promote the Congential Heart Futures Act. Steve, my co-blogger, will be there, keeping us filled in on the progress, providing some interviews and promoting the cause. I'm disappointed that due to last-minute circumstances I can't make it!

Here at the CHD Blog, we frequently receive stories and poems, some of which we post. There are a lot of heart warriors out there, and, in my mind, it's a wonderful thing. Lately we've received a few emails from a Heart Dad in Kentucky, one of which we posted. Recently he sent a poem to share with our readers. After consulting with my co-editor, we felt it was well worth posting, and hope you will agree, even if you come from a different religious background!

My Life Yet To Come

by David Moore

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

David, like many of us, saw a need and void in the CHD community, so created a network,

Within the heart community there is a lot of talk - how many groups are too many? Aren't our efforts too diluted already? Yes, we are diluted, and we need to unite. But are there too many groups? My answer, though many will not agree, is that different people need different levels of support, wish to be active in different ways, and have different overall goals. We all have one thing in common though - we all are, or love, someone with a heart defect. We all strive to make a difference for others that have walked down the often scary and lonely path of CHD survival and loss. We find it in a diverse array of ways, but we are united in spirit and hope for cures, better support systems, increased research and greater awareness.

Share your group's information and services, and we'll be happy to post them here - the more we network, the greater impact we can make!


Jenna said...

Hi there. Great poem. I was just wondering if anyone knows more about the Congenital Heart Futures Act. I just would love to read more about the specifics of what the draft looks like at this point so I can contact my legislators and try to get my friends and family involved in doing the say.

Becca said...


I have TOF, PA and PH. I just want to say reading this blog has given me so much hope. Thank you.


Anonymous said...

Dear Families,
Our daughter, Josephine Kate Richards, now Josie Kurz,
seems to be reliving anxieties that we, her parents Tim and Judith Richards, went through with her. When she was born, Josie had defective ureters and at 11 months underwent bladder surgery in New York City. One of her kidneys was already scarred, and doctors worried that her kidneys would not grow. Everything Josie Kurz, now parent of Claire Kurz, we too experienced as her parents. Events have a way of reoccurring, and somehow families connect even when they don't see each other, ever.
Josie chose to live with my sister in Midlothian when she was 15, and my sister refused to let her talk to us, even when Tim, Josie's father, suffered brain trauma in an automobile accident a year later. When hospital personnel tried to convince her to see her father, because he was not expected to live, she refused. Josie even accused us of setting a trap so we could see her again. That was 1999.

Thankfully, Tim is still alive. He is paralyzed, locked-in, knows what's going on but cannot move and cannot speak. He communicates with his eyes.

It was only accidentally that one day I came upon Josie's open letter to parents of CHD. We didn't know she had children. We didn't know that Claire had severe heart problems. We tried to donate monthly to the Midlothian VA Little Mended Hearts group, but I was cut off.

Josie now describes herself as the daughter of Cynthia and Bernard Monroe, my sister and brother-in-law. They too have a child whose condition broke their hearts. Josie is also now the grandchild of Bernard's mother, and Claire and Madelaine were/ her great grandchildren.

We can never go back to the train wrecks in our lives. We are sad that we will have no access to our Virginia grandchildren. Fortunately we have two other grandchildren, and see them frequently.

It's hard to love someone you cannot see or know about. But we do. We love them and Josie, and everyday send our love and best best wishes for Claire.

Josie, what you described in your 5 minutes letter feels as if I written it myself. Connected by the umbilical cord even months after you were born.
The doctors, the fear, the crazy crazy fear. I slept with you. Your Dad carried you to the surgical room for your operation at 11 months, put you down on the table, and wept. When you came out of surgery,
with your ureters crossed inside the wall of your bladder, I rocked you and fed you and swore you would live. And you did!

I don't write to hurt you. I write to let you know that among all your family members, your real father and your real mother understand you and Claire.

We love you and always will, :)

Judith Richards said...

On Dec.31. 2011 I posted a comment concerning our daughter, Josie Kurz and her daughter, Claire. At that time Josie's dad was still alive, having survived a brain injury in a car accident. Josie refused to speak to
her father over the 15 yrs he struggled to be part of the family. I would like Josie to know that her
father, Timothy Albert Burton Richards, died on May14, 2014, at Kansas City Hospice House, 7:45 p.m. Family and friends were with Tim when he died. In the obituary we listed all three of our children, and four grandchildren. One day Josie's children will learn about the rest of their family.
What a shame they didn't know their grandfather Tim.
Judith Richards, Josie's mother