Sunday, February 14, 2016

Day 14 - Tristan, Bryce, Scarlett & Rini Olson

Happy Valentine’s Day!

This is such beautiful day, and one with very special meaning to those parenting the amazing children we refer to as heart warriors.  The heart, that incredible organ which provides us with the essence of life, has propelled us into a world that can be so uncertain and frightening, but is also a treasure chest containing miracles and providing us with immeasurable strength.

This is my fourth year writing for 28 Days of Hearts, and looking back on the past I can scarcely believe all that has transpired!

28 Days of Hearts 2013
28 Days of Hearts 2014

            The past year has been uneventful!  Yes! As normal as can be for us and we are ever so grateful for this respite.  Relaxing and enjoying the sweet hum of regular days is something we wondered if we’d ever experience again, and it has been joyful to watch our children grow, thrive, and get to dance, play, and just enjoy being little kids.

            Tristan is now in his second year of Kindergarten and making great strides, with his Pulmonary Hypertension stable, as is his moderate tricuspid regurgitation (post op ASD/VSD). Our sweet and compassionate son brings tenderness into our lives, and we are proud of how hard he has worked to overcome many challenges.

            Our little boy with the impish grin, Bryce, is currently stable cardiac-wise (post-Nikaidoh procedure, double outlet right ventricle, transposition of the great arteries, pulmonary stenosis), and monitoring of his donor pulmonary valve takes place twice per year.  Bryce is quiet, yet quite the comedian and is always surrounded by a swarm of little girls, as per his Kindergarten teacher!

            Our ray of pure sunshine, Scarlett, has a smile that I’m sure could provide the world with power if it could be harnessed! Born with a complex variant of Hypoplastic Left Heart, Scarlett’s cardiac defects consist of single ventricle CHD stemming from complete left ventricular atresia, mitral atresia, double outlet right ventricle, transposition of the great arteries, single atrium, pulmonary stenosis, and total anomalous pulmonary venous return.  She had the Glenn upon arrival home in 2012, and the Fontan one year ago.  Our little beauty is in full-time Special Education Kindergarten, and continues to make strides with speech and daily functioning. We will likely be blessed with her presence in our home for the rest of her life, and we can’t think of anything sweeter!

            Fiesty and spirited, Rini has at last been able to enjoy a year of relative health and ease!  Only two ER visits plus her regular transplant clinic visits, heart catherizations and biopsies, our post-transplant miracle has had a chance to soak in the pleasures of life over the past twelve months!  She began attending a specialized preschool for medically fragile children which she enjoys two mornings per week, and we still have not lost the indescribable feeling that washed over us the first time we heard her precious donor’s heart beating in her chest. I pray we never will.

            From this (27 months ago)

            To this (two weeks ago at her transplant clinic)

            Miracles do happen!  Donate life!

            As part of my work as Executive Director of Little Hearts Medical, I speak to many families considering the adoption of a CHD child from China.  The concern I hear most often is the great fear that families have of suffering through hardship and loss by bringing a child with an unknown prognosis into their lives.  I lack the ability to articulate what I have come to believe through my own family’s journey, but this beautiful poem speaks for me. Embrace the threat of pain, and you embrace the blessings of joy.

On Joy and Sorrow
 Kahlil Gibran

Your joy is your sorrow unmasked.

And the selfsame well from which your laughter rises was oftentimes filled with your tears.

And how else can it be?

The deeper that sorrow carves into your being, the more joy you can contain.

Is not the cup that holds your wine the very cup that was burned in the potter's oven?

And is not the lute that soothes your spirit, the very wood that was hollowed with knives?

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater."

But I say unto you, they are inseparable.

Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.

Only when you are empty are you at standstill and balanced. When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

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1 comments: said...

Oh I have CHILLS - I just can't get enough of your kids and especially Miss Rini - such incredible gifts!!

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