Hi everyone.  The wonderful notes continue to pour in - thank you so much for encouraging us!  Here are a few samples: 

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"WOW! What a great article addressing the human plight in the face of suffering and being a sail in the raging storm. You are a blessing to many and an inspiration to the hurting."

"I am an Occupational Therapist, and also a runner. I was so touched by your story that I forwarded the link to many of my runner friends. Your son is adorable, and your dedication to him is a visible sign of God's love on earth. Best wishes to all of you as you continue the healing work of Jesus Christ. You will be in my prayers this season of miracles."

"Hi Graves family, Let me say that I have tears in my eyes as I write this. I had the privilege to run a bit of the marathon with Don today (I was the guy with the yellow shirt with the big "ELMER" on it). I just read the story on Seattletimes.com about Cody, and how running is theraputic for him. What a great story. As a father of an 18 month old (with another on the way), this story really hits home. I will make a donation through the elilepsy foundation - I just wish there was more I could do to help."

"Hi, I was looking at pictures of yesterdays run looking to see if I could spot my wife who was also running, when i saw your pictures and started reading about you. Really inspiring family you are.  We make blanket just for strollers here in Seattle called the "SammySack All Weather stroller blanket " (See SammySack.com)
Sammy is our youngest. It works really well with BOB strollers and works for bigger kids too. Maybe Cody could use one as it starts to get colder in Seattle? Just let us know what colors you like."  ((incidentally, the DID send us a sammysack and Don uses it for running with Cody - it is awesome!))

"What a darling boy you have and what a wonderful family you are. Thank you for sharing your story (which I first heard of after I saw the website on his stroller during the Seattle Marathon). You all are an inspiration to me to keep moving forward, no matter what challenges may lie ahead. I look forward to reading about Cody's continued progress. Give that boy a high five for me."
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My husband, Don, wrote a lot of people back (and is still in the process of responding to some.)  He said it would be okay if I shared one of his responses because I liked it.  Here it is - it's a note to a woman whose child also has infantile spasms.

Hi, This is Don. Thank you so much for your email!
 
I am so sorry to hear that you are in the same boat as us. Before Cody was diagnosed, I had no idea that this whole other world existed. Infantile Spasms is just such an insidious disease. Sometimes it seemed so odd to me that our child received this catastrophic diagnosis and I thought, "This is terrible. How come I've never heard of Infantile Spasms before? How come nobody ever told me about this?" Then I talk to people and think, "Why hasn't anyone ever heard of this before?"
 
I haven't worked out all of the details yet, but I'm pretty sure that we are going to be turning Cody's Hope into an official not-for-profit organization. I believe that I can get this done in time for the Seattle Rock n Roll marathon, which I plan on running also. 
 
I really hope that this doesn't sound odd, but I am a Christian and I unapologetically believe in the Bible and you and your husband absolutely made the right decision to have your daughter. I respect your courage. So many things in this world and in this life, especially with Cody, don't make sense. But this I do know, Cody has been a blessing to me. If nothing else, or for anyone else, Cody has drawn me closer to God and I have learned things, and recieved insight, that I never would have without Cody. Even something as simple as coming to the realization that when what I want more than anything is to hear Cody say, "Dad, I know what you have done for me. I understand the sacrifices that you have made for me, and I love you. Thank you. I love you dad." And I Think to myself, wow, that is actually pretty selfish. It is all about me. But I also then think, that must be how God feels. God must be thinking, "You know Don, I understand how you feel. Because that is exactly what I want to hear from MY children. That is what I wish I would hear from every single person on earth. But unlike Cody, they willingly reject Me."
 
I am surprised that life can be this difficult. I mean, we live in the USA, not some third world country. I don't have to worry about where my family's next meal is going to come from, or if we are going to get enough to eat today. I'm not caught up in the middle of some war. But, this life that we are living day to day is more difficult than I thought it would be.
 
One thing that helps is what Christ tells us in Matthew:

Matthew 25:34-40 (New International Version)

I know that Christ wasn't talking about our own children in those verses. But you know what? Cody and your daughter are the 'least of these brothers of mine'. They can't do these things for themselves, and the reason that they can't is not their fault. We are supposed to take care of them.
 
Hope that doesn't sound too preachy or that I don't come across as some kind of religious kook.
 
Anyway, I will definitely be praying for your daughter and your family.
 
Thank you so much for your email and I will keep you updated on Cody's Hope and the Seattle Marathon if you like.
 
Sincerely,
 
 
Don Graves
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The reason I like Don's response so much is because it reminds me that, as a special needs mom, I often feel like no one sees or knows what I have to do on a daily basis.  Holding Cody through seizures, staying up all night, research, stress.....yet that scripture reminds me that what I do for Cody....I am doing for the Lord.  By serving Cody, even in the smallest tasks like changing his diapers or wiping the drool off his chin, each individual act of service brings glory to God.  God's very clear in that scripture that what you do for the least of these, you do for me.  That brings acknowledgement and importance to each task I tackle - from emptying the dishwasher - to doing the laundry - to dragging Cody to yet another Dr. appt. or E.R. visit.  I'm not just serving my son, I'm serving the One who made him.  That's an honor that I rarely think of....I usually just go through my day doing what needs to be done...cuz it needs to be done!  But that scripture reminds me that even my laundry room is Holy ground.  I like that - and I'm glad my husband is a scripture-hound who loves the Word.  I'm the emotional one, he's the "knowledge-gatherer."  Together, we stay afloat!

Love to you all - and thank you again for your words of life to us. 

with love,

Shawna