My Son …
You're almost there my son,
laying there in your last bed as medications struggle to give you peace.
You haven't had this in a long time, and I’ve shed my pain through half closed eyes.
You never deserved this,
never deserved the massive mess that had no reason to take you slowly.
Like a monster, it set a fire that never will pass on like you will.
In the deep of my watery eye, I can see that you won't feel this pain anymore.
Even though I faced the time to agree on decisions made for you, I know that you in some way understand, because really, who am I to decide this fate for you?
How could anyone?
But it was out of love for you Kody.
Some reason I feel that you will be the brightest star that will linger in the night sky,
and I won't remember the pain you, your mother, and even I felt while you were here.
We will remember in stone how your laughter rang our ears; your mouth opens so far you can see your baby teeth grow.
We will always stand up for the way you would play with me, your dad,
giggle at the world when I would blow on your tiny belly,
or the sparkling masterpiece of your eyes when you just looked at me; and time and time again, you loved to dance to loud and upbeat techno music, winding up so much with energy no-one but me could feel, when I sang my favorite songs, as you cooed along.
You are my son. Always will be my son.
Your sister Emily will too remember the times she felt your warm arms around her as you comforted her many nights. She will not forget the time she tried to help feed you by holding your feeding tube.
No sadness or pain can take away the roses in your cheeks, the dimples in your hands, and small feet that kicked my face on accident once.
You are my son and your suffering will not take you anymore, because this isn't what love is.
Love is the fact that you exist.
Love is you.
Love is the bed you lay in now.
Kody's will to live is being overpowered by his disease, which he was, for no reason, born with.
Our last visit to the hospital was the worst one yet, it has even made his doctors question whether it is the time to let Kody pass on. We have come to our own realization and agree with the doctors’ thoughts and advice. Our decision to let Kody go was made with love.
Kody has had a short time with us on this Earth; he has been in pain for what seems a long time and without our decision, would have grown to be much worse.
The little time Kody has been a part of our lives, he has touched everyone who has crossed his path in some form or fashion. Kody is two years and three months old. It has been a great and wonderful pleasure to raise a fine and beautiful person and child as he.
The disease that he has is rare and unbearable, and people need to know about it so that they can research or find some way to find a cure for this horrible child depriving disease. If anyone wants to do their own research, they may find many documents on the Internet, just start with this
Menkes disease is a disorder that affects copper levels in the body. It is characterized by sparse, kinky hair; failure to thrive; and progressive deterioration of the nervous system.
Thank you for listenning :)