However, today we are here to mourn the loss of that boy. Having a son with disabilities and becoming what Ian did, certainly is not a parents plan, especially as a father. A father looks forward to being able to run and play with a son. To be able to go in to the backyard and throw a ball around and do just about anything boys do. Unfortunately, Ian was not able to do those things throughout his life. Yes he had the ability to run, jump and play in the first half of his life, before the disease really took hold of him and we always had the best of times. From both Becca and Ian jumping on me while wrestling to me picking him up by the back of his overalls and hoisting him into the air.
For those of us who were fortunate enough to have Ian be a part of our lives, I think we can all agree that he made the most of it. He always had the ability to make you smile, to make you laugh and yes even to make you yell and scream. Despite his inabilities to care for himself since he was about 9 years of age, he still kept a smile on his face and made the most out of each and every moment. Sure he had his moments of despair and emotion but who wouldn't in his situation. He endured more than any person should ever have to endure in life.
G-d didn't rob Ian of life. He allowed him to live it to the fullest and experience as much as possible. Ian did amazing things during his short time here from going to Disney World a few times, meeting the entire Baltimore Ravens football team to being able to throw out the first pitch at an Orioles game. We were all allowed to be a part of his life and experience everything with him.
Over the years we have constantly told Ian how much we love him, how proud of him we are and what an inspiration he is to all he meets and even some he has never met. All your support over the years has also helped Marci, Becca and myself deal with the day in and day out struggle of raising a child with a rare genetic disease. Marci and I also have many thanks to all our doctors over the years that never stopped fighting to figure out what was going on with Ian. I am not sure Marci and I could've really accepted Ian's passing without having that knowledge but at least we do not have to live without that question being unanswered.
As we have told Ian we will be ok down here. That was true and at the same time that wasn't true. Initially we are and we will be devastated at our loss. Our house and our lives will feel very empty for the time being and the near future. However, the truth is eventually we will be ok. I'd like to read something that I have been carrying around with me since my grandfather passed away back on September 15, 20 years ago. It's called
TO THOSE I LOVE AND TO THOSE WHO LOVE ME
When I am gone, release me, let me go.
I have so many things to see, and so you mustn't tie me to yourself with tears.
Be happy that we had so many beautiful years (or moments shared).
I gave you my love.
You can only guess how much you gave me in happiness.
I thank you for the love you each have shown.
But now its time I travelled alone.
So grieve for me for a while if grieve you must.
Then let your grief be comforted by trust.
Its only for a while that we must part, so bless the memory within your heart.
I won't be far away, for life goes on.
So if you need me, call and I will come.
Thought you can't see or touch me, I'll be near.
And if you listen with your heart, you'll hear all my love around you soft and clear.
And then, when you must come this way alone, I'll greet you with a smile and say "welcome home"
Ian, today you are free. Free from the machines, free from all the meds, free from all the treatments to make you and keep you feeling good. Today, everything you have lost over the years that was taken away from you comes back to you. Go, run and play. Do all the things you have not been able to and can now once again do. We will most certainly meet up again one day. Keep near the phone since you asked if there was one up in Heaven, because mommy, Becca, and I will be talking to you soon and often. As well when we are ready we will call and let you know we are on our way to be with you again. Just because you are not with us physically any longer, you are and always will be with us in our hearts, our minds, and our very souls. Our family of four will always be a family of four. Becca and you will always be twins and brother and sister. You will always be mommy and daddys little man. Finally you will always be my superhero and nothing will ever take that away from me.
I love you son and send you onto brighter things.