There is so much to post, so much to update yet I'm so focused on something I'm finding it hard to deal with much else. For over 7 years we have fought for our Kyle. For 7 years there has always been a next step....a new hope...another dream. Right now we are living in the land of no new steps. No other options.... When we got home from Kyle's Make A Wish it was the first time in over 7 years that there was no next step for me to focus on, no next step to hope for. It was the first time I had to force myself to realize and deal with the fact that this is our life...there is no miracle cure out there for our sweet boy. I can say I didn't handle our first week home well, I felt so out of sorts and incredibly sad. We are maintaining our sweet boy and that is not a good feeling for me. I'm trying to take it a day at a time, trying to not focus on the future but instead focus on and be grateful for today...for the most part that's working for me but there are moments where all this just seems like to much...to painful. I so desperately want to fix this..
Our Make A Wish trip was wonderful, to have our family all in the same place for a week of fun was priceless...Give Kids the World which was the resort we stayed at was beyond amazing..they treated all 3 kids like little heroes and that was great for all of them. I'm pretty sure the fact that they had a pool that Kyle could walk into was one of our guy's favorite things on the trip I know that swimming is one of the things that Kyle misses the most. It was beautiful to watch his sweet face when he walked into the pool...priceless.
If anyone is interested in the Team Kyle Energy Armor bands...please email my girls at teamkyle2004@gmail.com We need your size and shipping info <3 thank you EA for this incredible gift...your hearts are beyond anything I could describe....
To see pictures of the bands you can check out Kyle's fb page... www.facebook.com/livinglifefortoday
Thank you for loving us. I know it's not always easy but for those of you still sticking around...thank you.
7 comments:
Thanks for the update. I think about you and Kyle often. This may be a stupid question but have you looked into getting him into the EPI-743 trial? Reagan just started it a few weeks ago. I know it's not a cure...but at least it gives us some hope. Just thought I'd mention it.
My heart aches for your pain, and it is also over joyed by the love you show for others. I pray every night that Kyle will wake up with a miracle cure. There may be no next step today, but everyday there are advances in technology and before you know it there will be a staircase full of hope again! Your family has given so many strength when needed, its your turn to lean on us for encouragement!
It is so easy to heart you guys.
I honestly know that I can not even begin to imagine the heaviness that weighs on your heart. Even if I tried, I know it wouldn't do you justice. I also know that you completely embody living life for today and you do so under the most difficult of circumstances. It's hard to keep the mind in now when all it wants to do is run ahead, behind and all around.
Sending you wishes for peaceful now moments.
xoxoxo
Lauren
I am happy to hear that the Disney trip was so good. I admire your determination to live one day at a time, but that weighs heavily on you.
I will keep you all in my prayers.
It *is* so easy to love you all! I think about you daily and send all my love. Luke prays for Kyle all the time.
Thank you for updating. Kate... the emotions and the pain you are feeling - I cannot fathom. I hope you feel every ounce of love from all who know you. xoxoxo
i hop over to your blog regularly and keep you and your entire family in my thoughts. you have opened a door into your life and showed others, so eloquently, the love and the pain that are there.
sending all of you wishes for rest and healing, and the comfort of togetherness.
- Olga in Seattle
My heart aches for your pain, and it is also over joyed by the love you show for others. I pray every night that Kyle will wake up with a miracle cure. There may be no next step today, but everyday there are advances in technology and before you know it there will be a staircase full of hope again! Your family has given so many strength when needed, its your turn to lean on us for encouragement!
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