CHD Awareness Week

This week is a wonderful reminder of how far Samantha has come from June 8, 2004 when we welcomed her into our world and she changed our life for eternity. It has been almost two years since we faced the heart breaking decision to have her endure a surgery of "cutting balloons" to try and widen her tiny and narrow pulmonary arteries leading from her heart into her lungs.

Our ward fasted and prayed with us as we faced our biggest fear of loosing Samantha and having our family crumble. Amazingly enough, yet secretly... almost expected (I say that tongue in cheek) with the incredible powers of fasting testimonies I have heard, Doctors found no further narrowings that were significant enough to risk surgery and ultimately Samantha's life. Her cardiologist and surgical team found her stable to endure the needed valve change which of course meant open heart surgery. This would be Samantha's fourth but first that was not reconstructive in nature. Samatha came through with flying colors and was released and home in five days.

The last two years have been wonderful...almost no medical worries as far as Samantha's condition. This is a wonderful reflection period to look back at God's hand in our lives, blessing us with faith in the face of fear and supplying love to sustain us. In celebration of Samantha's life and this week of awareness here are a few tidbits I have found along the way from other heart parents.

My child reached for me today,
and I wanted you to know...
that as I spend each day with her,
and get to watch her grow,
as she cuddles close beside me,
wraps her fingers in my hair,
I know she would not be here now,
had it not been for your care.
Your hands rebuilt the tiny heart,
that beats within her chest.
Had others never seen her scar,
they never would have guessed,
that a man could take but half a heart,
and help a child to live,
we thank God for you everyday,
and all the joy you give.
This journey is uncertain,
but, with hope we may succeed,
we would not tread this path at all,
had it not been for your lead,
Samantha is a miracle,
(She's cute and sweet and smart)
We thank you for our precious one,
with such a special heart.

~Stephanie Husted
Originally posted on her blog that she wrote for her son.
(I made changes for Samantha)

Behind Your Scar...

Sometimes I have those "moments",
When I think...life's just not fair,
Then I think of all you've been through,
And I see the scar you bear.
A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?
And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.
What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)
People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)
Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.
If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.
It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?
You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.
No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.
You've taught us to love one another,
(Helping each other to cope)
You've taught us compassion for others,
You've taught us to never lose hope.
You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

~Stephanie Husted


How? Why?

How? Why?
People keep looking and asking
“How do you do it?”
“How do you keep living like this?”
I always say “One day at a time”
“I’m on a mission from God…
I will complete it; I have this heart for a reason.”
People may or may not understand
But I don’t need them too
God makes no mistakes.

I know why I was given this heart
To teach people how to live
To live like every day was my last
To love and to be loved
To help spread the awareness
To show people how to care
To give everything I’ve got
To let everyone know that every day is blessed
Tomorrow is not promised
My heart may be half and very mended
But I don’t regret anything
I’m blessed, I’m grateful, I’m happy
So smile, laugh, love, give, and live
If I can do it, if every single heart kid can do it
So can you!

Mended hearts are here on earth to show us
Show us life is to never be taken for granted
Look at their happiness and smiles
They live to the fullest through every trial
On a mission they are from God
No matter the time they have here
They fulfill their duties with all their heart
They are miracles that bless us
Listen to their heart it tells a story
And learn from the their journey
Never lose Hope, Love, and Faith
I’m a mended heart on a mission
How do I do it?
I just keep living, this is my life.

Poem By: Lauren (22yr. old CHD Survivor)

Borrowed from yet another heart mother, courtesy of Shannon Mason:

Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia."
"This one gets twins. The Patron saint will be Matthew."
"This one gets a son. The Patron saint…give her Gerard. He is used to profanity"

Finally He passes a name to an angel and smiles, "Give her a disabled child." The angel is curious, "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today; she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" Asks the angel, his pen poised in mid air.

God smiles, "A mirror will suffice."