Artists that lift my soul...

Last week, Monday, February 15, Ryan and myself were fortunate enough to attend Paul Cardall's Celebration of Life Concert. We discovered Paul's music about two years ago and immediately fell in love with his work. At that time we were preparing for Samantha's fourth open heart surgery (valve replacement). Unknowingly at the same time Paul was about to begin suffering from Congestive Heart failure and would need a heart transplant.

We were unaware of his health condition or his connection with CHD. We only knew he was an amazing pianist and his music soothes our souls and lets peace find you even during the darkest of hours. While I was pregnant with Madilyn I had seen on Good Things Utah, that his friends were doing a benefit concert (Living for Eden) for Paul to help relieve some medical costs for this "starving" artist. I then learned he was facing some serious medical issues but I was still unaware that it was his heart ( I guess I missed the interview) that was the problem.


About two weeks before Valentine's Day this year Ryan decided to look up his blog and see how his health and music was going. This is when we discovered that he had been recovering from his HEART TRANSPLANT!! He is a CHD survivor. Again we fell in love and had an immediate connection and I had to know everything. Funny how when your world is rocked by something it is suddenly the greatest and most important cause in all of the world. Looking at his blog I realized he was deeply submerged in the CHD world here in SLC and many families have been following his blog and in turn him, their's. Well I have fallen head over heels into the CHD world and seem to be obsessed with these families and their children and their fights....and their blogs.

I have always heard that you seem to find things just as you need them. Well I have discovered this little CHD blogging world and have gained testimony, faith, hope, "friends", love, compassion, empathy and the list goes on and on. Most of these blogs were started years ago when their children were first diagnosed with CHD and many of these beautiful children have returned to heaven and are now the Angel's of the CHD world (my BIGGEST fear). I find myself getting so involved with these amazing stories, that I am sitting at the computer bauling and hoping for so much more time with Samantha. Like I said I hope this is just an incredible blessing with no strings attached but I keep worrying that I have stumbled upon these blogs because I will need them...OK I also worry a lot too!! Anyway this has been weighing heavy on my mind and I just wanted to get it off my chest, so to speak.

Samantha is doing great and I have no reason to worry but I guess that is what a Mom does. Well, because she is doing so wonderful is why I was thrilled to be attending Paul Cardall's Concert and Celebrating Life...his, Samantha's, mine, ours...life in general. Mine has been pretty amazing lately and I think I have been taking it for granted.

This concert was amazing and inspirational. I could have sat there enveloped in a feeling of peace forever. Anyone that has not discovered Paul should really take a listen, he is WONDERFUL. At the concert "we" were introduced to Mindy Gledhill, a friend of Paul's and a new favorite of mine.

~Mindy Gledhill

We were also reintroduced to an old favorite, Peter Breinholt. I found some great pictures and wanted to capture our wonderful night. Also one of the funnest parts of the concert was when Peter B. asked us to be old school with new school technology...we all opened our cell phones and made beautiful twinkling lights.I also just found out that Paul Cardall want's to make this a yearly event and has dedicated himself to doing another Life Celebration in 2011...I can't wait. I am sure we have a new family tradition and a wonderful way to celebrate Valentines, CHD Awareness week and LIFE...OUR LIFE!!

P.S. If you want to take a listen to either Paul or Mindy I have added some of their music to my play list down below...take a listen and enjoy. I know I do!

What has my life become?

Recently I found myself submerged once again in the blogging world. Reading someone's blog can be like finding a window into someone's most personal and intimate feelings. I have been visiting blogs from those that have experienced some amazing things and ultimately endured or are enduring the most life changing events one could ever expect to be faced with.

Today I have to share what I can no longer pretend is not true... all the crazy things I never thought I was really thankful for but when faced with the the thought of not having them in my life...makes me want to cry. So today I am thankful for:
The sounds of screaming, fighting, crying and giggling children
Mess after mess that I get to clean up
Mounds of dishes and laundry that haunt me daily
Cookie and cracker crumbs that I find out of my kitchen
Mopping up the floor and walls and ceiling after my children bathe
Peanut butter and jelly finger prints on my cabinets, wall and banisters
Lost sippy cups and pacifiers
Diapers, formula and wipes
Milk and toaster waffles
Endless requests for Bunny Milk or Cocoa Milk (Nesquik Mix)
Constantly repacking the enormous diaper bag
Having people to fight with about the things that are really not important
Having someone to hold during the quiet times
Little ones that love that I sing to them
Having someone who is always up for a dance
Reading the same books over and over
Watching the same movies and cartoons over and over again
Doctor offices and co-pays
Mounds of medical bills piling up
My house overflowing with toys
The oxygen tank in my living room
Not finding time to dust, vacuum and mop daily
Hearing my name "Mom", "mama" and "MOMMY" over and over again
Trying to find a baby sitter
Having messes in the mini-van
Having a reason to have a mini van
Trying to convince my five year old
Chasing after my two year old and
Catering to my six month old
...Well I think you get the idea. The alternative to this crazy life of mine is nothing I would ever wish for...I will find goodness in something everyday no matter what! Thank you to all the parents out there that have opened my eyes to ALL of my blessings right in front of my eyes and under my foot!!

May you see that God has blessed you too.

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."

Our trials have been many but Our blessings have been GREAT!

This is a poem that many heart moms and dads receive while sitting in the hospital awaiting the future of their little ones battling with a heart defect. Samantha's heart condition is major but when compared to other little angels her fight has been secure and filled with many blessings. I found this on a blog from a heart mom that we shared time with during Samantha's last surgery almost two years ago in April of 2008.

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

I have never had the courage to follow Gracie's blog...I left the hospital with a prayer in my heart for this baby girl and told myself she would be ok- she just had to be. I have just found out that Gracie died last year in March 2009...right before her first birthday following a heart transplant. I only knew of this family for three days while Samantha was in the PICU but I had wonderful conversations and shared my experiences with them...hoping to give them hope too. I overheard and witnessed blessings, faith and love that were indescribable and I often have thought about this family and their little Gracie. Samantha's procedures have always went picture perfect with tiny little bumps but nothing like what this family has endured. Ryan and I learned very quickly that when you want to feel great about your crappy situation go sit in the PICU and start talking to those people there. I always find myself grateful for my situation and praying for those that are currently learning a different lesson and following a different path that their Heavenly Father has made for them.

I have been reading her blog and have been crying almost nonstop for hours now. Looking at their pictures and words I have many memories flooding over me with Sam and the heartache we went through with her and the scary times that I know we will still have to face. When I learned of her condition minutes after her birth, I turned right to my Heavenly Father...even though I had probably not said a prayer since I was a young girl. It is amazing the lessons you learn during your trials. I pray that now that I am a mother of three beautiful girls...the lessons I have learned and the gospel that has found me once again (from childhood roots and a wonderful friend, my Missionary, Simon) will remain strong in my heart, mind and actions.

I read this on another blog and it rang true for me..."Sometimes I feel like I loose faith...not in our Heavenly Father but in myself" to be able to endure to the end and participate in his plan for my family and my most precious girls.