February 13, 2010

What CHD Means to Me Now

CHD you meant nothing to me.

I did not know you.

I had vaguely heard of your effects but never knew you had a name.

Honestly, I would have rather never met you … ever.

But you had other plans.

You abruptly came into our lives. No one invited you.

You were not needed nor welcomed. But you came.

You hurt my baby. You broke her heart.

I don’t like you. I am tired of you.

You have caused much destruction.

You have taken too many lives.

You have shattered too many dreams.

You have caused much bloodshed.

You have created a never ending river of tears.

You have broken many literal and figurative hearts and continue to do so.

When you break one child’s heart you break the whole families.

You know that and you like it. It is your thing.

You should be ashamed of yourself.

But your time is coming. You will not succeed in this endeavor forever.

I know that for a fact. Can you feel it?

Things are changing. Your victims are uniting!

They are rising up and will be silent no more!

We will make a difference. We will take a stand!

For all the warriors, those lost in the battle and those still fighting, we will keep fighting you!

Our children, our families, our friends, our neighbors, our medicine, technology and finally our God will conquer you!

Can you hear it? Everyone is talking.

You have ignited a raging fire that can no longer be contained.

Enough is enough!

With every beat of our heart’s we will make known the monster that you are.

You may have broken our hearts but not our spirit.

You may have taken us down, once, twice or many a time, but never out.

You affect unborn children. Why do you disrupt them in the womb? Do you not know that is a sacred place?

You affect newborns. Why must you take them away from their mother’s aching arms and swollen breast?

You affect babies. Why must you take them away from the security and comfort of their home?

You affect toddlers. Why must you interrupt their development and personality and joy to explore and learn?

You affect children. Why must you place fear in their hearts as they learn to face you?

You affect teenagers. Why must you leave so many scars? Do you not know these years are difficult and nobody likes to feel different?

You affect young adults. Why must you meddle in their future plans?

You affect parents. Why must you bring such agony and constant worry?

You use to mean nothing to me. Yet now I think of you often.

I don’t like to but I can’t help it.

I can think of you anywhere at any time for any reason.

I can look at my baby and think of you.

You are there, lurking in her mended little heart that needs fixing again.

You are there when I see her oxygen saturation levels hit 67.

You are there when I worry about the physical and emotional toll you will take on her.

You are there as I prepare for her next surgery.

You are there when I lie next to her at night and wish you were not in our lives.

You are there when my older children tell me they wish their baby sister did not have to go the hospital.

You are there when my husband cannot change jobs because we need the health insurance.

You are there when my mom calls everyday wanting to know how the little princess is doing?

You are there when my friends ask me about my baby and her next surgery?

You are there when I close my eyes and I want to be sure I can see my daughter outlive me.

You are there when you make everyone of her smiles, giggles, new words, kisses and hugs more meaningful.

You are there when I read about new families joining this journey.

You are there when I hear about babies passing away.

You are there when parents are worried sick at the hospital keeping vigil on their little ones.

You are there with every doctor visit.

You are there when I see the oxygen tanks sitting around my house.

You are there when every night I must give my baby half a tablet of baby aspirin.

You are there when we want to go the zoo but we must avoid public places.

You are there when I want to go to the store but I decide against it for fear of my baby getting sick.

You are there when I must face a medical procedure as simple as a blood draw but I have the courage to take it because my baby has endured that many times over plus the unthinkable.

You are there when I walk around the grocery and see a box labeled 'heart healthy' and think 'if it were only that easy.'

You are there when I hear or see future dates and wonder what our life will be like.

You are there when I feel my heart start pounding faster with worry and anticipation.

You are in my prayers to God as I pray for us and others.

And you are here now as write these words.      

I did not know you CHD and you meant nothing.

With time I have come to know your ways and find you worthless.

I admit however, that your presence is undeniably powerful.

When you barged into my life you expeditiously made all the blessings in my life more valuable

and that CHD, means everything to me!

I wrote this at 2 a.m. hope it makes sense when I wake up and read it later but it does come from my heart.


  1. I think it made prefect sense...something that us heart moms understand very well!

    Stef, Ryan, Wyatt and Logan

  2. When you speak from the heart it always makes more sense rather then trying to find the perfect words. En el nuevo orden todo sera muy diferente hasta entonces sigue fuerte. We love you guys!!! Your words were well said.

  3. Just found you through Cora's page. Wow...this was very well written. I am a heart mom to a 1 year old with Hypoplastic Right Heart. This really spoke to me and I understand all your feelings that you wrote in this post. Well said!
    Catherine (www.clinkscalesfamily.blogspot.com)

  4. RE: "Letters To Mommy"

    Hi Michelle, Thanks for your comments on "Letters To Mommy". By all means share it, as long as you do give me the credit (I've had a few already try to claim it as their own). Feel free to email me at bstewart17@live.com or Join The Fight: CHD's emails, jointhefightCHD@hotmail.com. I do not check JTF's email as often as I'd like, but I'm always checking me email.

    Hope to hear from you in the future.

    ~Bobbie Jo Stewart

  5. Hi!
    I came across your blog today. That was very well said. I hope all is well with Alexa. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
    I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
    My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
    Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
    Thanks so much and we look forward to reading more on your blog!
    Vito Lisa

    P.S. If you want to keep up with Cassidy’s journey here is her Carepage info:
    www.carepages.com , Page name: cassidylisa

  6. From one 'Heart Mom' to another... we are fighting with you!


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