Tuesday, July 9, 2013


If you haven't heard, we were told that Braden has a pre-leukemia (MDS) and it is a result of his treatments. They believe it was either the MIBG or the Temodar chemotherapy he had for 8 months.

And the odds of survival are really horrible. I mean really horrible.

We were told Braden had weeks to a few months to live.

So we are searching the world right now for anything that could help him.

We have known that we were likely trading long term for short term when we had to do these treatments to try to prolong his life.  And we got 3 years we were told we wouldn't.

It doesn't make this news any easier.

We have been living for this moment for 6 years. We have detoured at every opportunity, we have completely soaked in each minute and made memories cANCER can never take away from us.

I have memorized my son's face, fingers, toes, eyelashes, everything because I have feared the day when I would say goodbye to him and never see him again.

We have been optimistic and hopeful realists.

And...it doesn't make this any easier.

I don't want him to die.

And I am completely, and utterly not in control of this.

To be very clear, I do NOT believe that this is God's work or God's will...I don't.

The God I believe in does NOT give children cancer and watch them suffer and die.  I will never believe that and I will refute any discussions/suggestions of "This is God's will" and "Only the good die young"....not helpful statements and I believe they are wrong.  The God I believe in is crying right now with us.

And again...it doesn't make this much easier but it does cut the "why" question out for me.

Braden feels fine right now so we are hitting the detour trail like crazy. We went to the water park today and have two more detours planned for tomorrow.

We even stopped at an arcade on the way from the hospital after we got the diagnoses because he wanted to play Skee Ball.

We haven't given up yet...we are still searching, but we are realists.

And all I can think about is things like the new shoes I bought him a week ago that were a little bit too big.

It didn't worry me at all because I figured he would grow into them...

And his birthday, September 9...will he see the age of 9?


I put our Christmas stockings away every year by kissing Braden's, putting it on top of the pile, and hoping he will still be here the following year when I pull them out again.

Am I going to be able to even look at that box?

Zach's hand-me-down winter clothes that I had already put in Braden's closet when I cleared things out for summer.

I'm sort of lost right now.

He is full of life! We are so blessed that he is still "Braden" right now!

I watched him at the water park today running around, turning levers to make different things shoot water, and the entire time he was smiling and laughing.

I cried as I watched him because there is SO much joy and life in this child.

He doesn't have clue he is supposed to die soon.

What a blessing!!  Thank you autism.

But we do, Zach does, and so do all of our friends, who are truly our family.

We have been absolutely inundated with messages, calls, texts, emails, etc from thousands of people from all over the world who are hoping and praying with us.

The amount of love and kindness people have shown our family is absolutely humbling. Seriously. It's remarkable.

I read every message and I cherish them. I just can't respond. There are so many that it's impossible and my heart just cannot do it.

I'm still in the stage of putting up my fortress because I can't deal with all the collective sadness when I'm still identifying my own.  I will get there, but I'm very slow at this so please don't take it personally. I will sound like a bad date but "Really...it's not you, it's me!" :)

We still have time for more memories and we will continue to create them and wait for more information that could help prolong his life.  That's a gigantic blessing.


We don't know how much but we know we have some which is a lot more than many people get with death.

I think about our friends who have had to say goodbye to their babies. I think about them every day. And my heart aches for them.

No parent should have to do this with their child.

It is NOT right, it is not fair and it is not okay.

I want to hold him every minute, I want to kiss him every second.

I want to smell his hair, and tickle him until he gets the hiccups.

I want to tell him I love him a billion times a day and hear it from him that many as well.

I want to watch him run and play and have fun like any little boy.

And I want to find cancer in a dark alley....

It threatens to kill him again.  STOP IT cANCER!

Leave our son ALONE!!!!

But no matter how much I wish it and how much I cry and how loudly I scream...I cannot change the fact that he has this disease in a new form and things looks scarier than they ever have before.


For now...I try to put all of the "realist" things in the back of my mind and spend my time cherishing every minute, continuing to fight, making memories, living, loving...

And hoping.

We will ALWAYS hope.

Please hope with us!

We have so many blessings...the greatest are love, friends, faith, and hope!

Now is not the time to give in, now is the time to pray or whatever you believe in harder than you have EVER done before.