I don't have words. But I know I have to give you some. It has now been 10 days since Jesse died unexpectedly to complications of his type 1 diabetes. Tonight my family - now only 4 - went to dinner to try to feel some sense of normalcy...
Those first few days I kept saying to everyone in a fog, "How can I go on telling people its not a death sentence? I've lied to them..."
Joe Brady, a good friend and a Triabetes athlete showed up the next day with a poem he claims was written with divine intervention. Framed, it sits next to me, I write it below:
Life Sentence
Did I say these words to a hundred,
a thousand parents?
"My name is Michelle Alswager
and my son, like your child, has type 1 diabetes
but don't worry,
it's not a death sentence."
My son Jesse, so little, diagnosed at age three
and so early gone at thirteen
I ask myself, what will I tell the parents now?
With eyes closed, I see my son..and know the answer:
Refuse with me to feel sorry for him
For he lived his diagnosis as a life sentence
with no time limit guarantee.
A life sentence to celebrate his days
touching others with his smile and patient ways
chilling with his school friends and neighbors
advocating with Governor, Congress, and doctors to find the cure.
Hanging with Dad at neighborhood parties
loving music, playing his sweet-sounding life melody
carving sharp, crisp lines with Sean on snowy slopes
laughing with brother and sisters at mom's corny jokes.
For him, beating the disease was to never
compromise, yield, submit or succumb
to an affliction whose victories
are counted with each lost possibility and
"can't do 'cause I've got type 1."
Never did he say "pity me" or "it's not fair"
Instead we heard "what's next?" and "let's go" and "cool!"
as he lived his life sentence.
So Please hear me, dear parent with newly diagnosed type 1,
not once did my son yield, submit or succumb
his life was rich, vibrant, a celebration...
Jesse didn't lose - he won.
~Joe Brady
Godspeed Jesse. We keep fighting for you and mom misses you and wishes you were here.
10 comments:
While I do not personally know you my heart aches for you guys. I've said that many times since I learned of Jesse's passing, but I am truly saddened and broken hearted.
My own son who will be 13 on July 7, was dx'd at the age of 2, just 4 weeks before he turned 3.
I can't put into words the exact feeling I felt when I read jesses obit. I cried, and I asked why?!
He's only 13! My thoughts and prayers are with you!!
OMGsh. I'm heartbroken. Stunned. Sad.
I will pray for your family...this journey...your broken heart.
Oh, sweet fellow D mother, I am so incredibly sorry for your loss.
Heartbeoken doesn't begin to describe how I feel right now. I am scared what life has in store for us in this T1 journey. I hope that my son will also live his life to the fullest as Jesse did.
Our prayers are with you and your entire family. God Bless.
I weep for you and your family. My heart is broken for you. I do not know you but please know that I am here praying for you and your family.
My son, Nathan was dx at 14months last year.
I am truly sorry for your loss.
I'm so sorry. Just so, so sorry. I am sitting here in tears and I just don't know what to say.
What an amazing, inspirational child you raised. I know you are so proud of all he has done in his short 13 years.
Your family is in my thoughts and prayers. I am so very sorry for the loss of your wonderful litle boy.
Kris (Fellow mom of a T1 child dx'd 5 years ago at age 4)
Amen, Joe - well said. I totally agree with you. Michelle knows its not a death sentence any more than life itself is. The danger in having T1 is the same as living any "normal" life... its not dying that one should worry about, its NOT LIVING that is the tragedy. I choose to be like Jesse - I choose to live... and type 1 better get the hell out of my way. Thank you Joe - I hope to meet up with you again one day. Michelle, we are thinking of you and Sam and the rest of the family and community as always.
I'm so sorry to hear about your loss. It's so scary to me. My daughter is 6...dx 2 years ago with T1. Know that we are praying for you.
What a beautiful, moving poem about Jesse, and how true the message. Thank you, Joe. And love to you, Michelle and family. We think of you with affection and concern every day.
Linda and Bruce Findlay
What a pleasure to have met Jesse through video but he was full of life and great courage. My prayers for the family and may he rest in peace.
I am also the mother of a child with T1. My daughter Avery was dx at age 3 last year. My heart aches for you and your family. We are so grateful for the miracle of Jesse's life and how many people he touched and what a difference he made for a cause so close to our hearts. He is a hero , and we will always keep him in our prayers, thoughts, and our hearts.
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