Alex and Maddy

Alex and Maddy

Wednesday, October 14, 2009

This poem was written by one of my closest friends and comrades on this journey through mitochondri​al 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



Ou​r 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.



Th​en 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

Docto​rs, therapies, and genetics to sort out

We celebrated each milestone as a success

And we’re humbled by your determinati​on to progress

Yo​u never gave up, you took each struggle in stride

Our hearts and our souls were so full of pride.



Ou​r 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

Nothi​ng 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

B​ut 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

O​ur hearts and our souls are so full of pride.



Yo​u may not win the world series or the superbowl

Y​ou 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 determinati​on to live can not be denied

Our hearts and our souls are so full of pride





L​ife hasn’t been easy by most’s definition

​But you live your life with great ambition

Yo​u’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



Thi​s 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

Bec​ause 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

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