This poem was written by one of my closest friends and comrades on this journey through mitochondrial disease. It so perfectly portrays the feelings Bruce and I have felt over the last 5 years. I wanted to share it with you and Missy was gracious enough to allow me to post it here. Missy- Thanks for being a true friend and walking side by side with me every day.
So Full of Pride
By Missy Knight
Our precious child, our heart, our soul
We dreamed of you and the life you’d hold
You’d be a leader, a scholar, an athlete, a star.
Life would be easy, you would go so far.
You’d conquer the world without batting an eye
Our hearts and our souls would be full of pride.
We planned your life before you were born
We had no idea how our life would be torn.
You entered the world and we fell in love
We knew right away you were sent from above
You came out a fighter and with your first cry
Our hearts and our souls were so full of pride.
Then came the news, a parent’s worst fear
There was something wrong and it wasn’t clear
Our world seemed to shatter as we tried to comprehend
What did this mean? Would your life end?
We watched as you fought and we stayed by your side
Our hearts and our souls were so full of pride.
We were thrust into a world we knew nothing about
Doctors, therapies, and genetics to sort out
We celebrated each milestone as a success
And we’re humbled by your determination to progress
You never gave up, you took each struggle in stride
Our hearts and our souls were so full of pride.
Our dreams were lost and our hearts ache
we tried to put the pieces together for your sake
It didn’t take long and soon we saw
You were perfect, complete, not one little flaw
The life we had planned for you would not be denied
Our hearts and our souls are so full of pride
You may not be the president or a corporate ceo
You may not solve world hunger or world peace with all you know
But you have the heart of a great leader, all the same
You lead us by example, you don’t ever lay blame
Nothing is impossible when you give your best try
Our hearts and our souls are so full of pride
You may not graduate from an Ivy League College
You may not impress the world with all your important knowledge
But you challenge researchers to try and find a cure
You motivate the scholars by all that you endure
The knowledge you inspire will help others worldwide
Our hearts and our souls are so full of pride.
You may not win the world series or the superbowl
You may not set records or bring home the gold
But you are an athlete in your own right
Your strength, endurance, and your will to fight
Your determination to live can not be denied
Our hearts and our souls are so full of pride
Life hasn’t been easy by most’s definition
But you live your life with great ambition
You’ve welcomed each challenge and never complained
You get up each day and know there’ll be pain
Yet you push on and push forward and take it all in stride
Our hearts and our souls are so full of pride
This isn’t the life we would ever have planned
But it’s the life we’ve been given and we understand
What a blessing it is to hold you in our heart
We’ve cherished our time with you right from the start
While your needs may seem many, we’ll gladly provide
Because our hearts and our souls are so full of pride
Alex- We ARE so full of pride. Proud of your incredible spirit. Proud of your fun-loving personality. Proud of your kind heart. Proud of your strength every day. Thank you for blessing us with your love and teaching us how to live.
Love, Mommy and Daddy
Alex and Maddy
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