You Are Amazing

Two hours ago Matt suggested I put the computer away. Jace fell asleep at 9 PM!! (a record for our stay here), and we were more than ready to sleep. I was catching up on the comments from the day, and as soon as I finished I closed my laptop, put my phone on silent, and rested my head on the pillow.

But...tonight I have the chair by Jace's bed. Last night Matt took this shift. We've decided at least one of us needs to try to be rested in order to be strong the next day. Our dear friend brought in an itty, bitty air matress that barely fits behind the rocking chair on the floor, so we've traded nights on it. (Don't tell on us though. We're pretty sure it's not allowed. We were told that only one parent can stay with the child, but for "a first time diagnosis family," they bend the rules...).

Having the chair by the bed means it's hard to sleep, because all I can do is look at Jace. His precious face is illuminated by the permanent nightlight in the room, and he's restless. He's tossing and turning, and even in sleep you can tell he doesn't feel well. Then my thoughts drift to wondering how I might be responsible for his current health. PLEASE don't send me comments like, "Don't beat yourself up," and "It's not your fault." My brain knows that, but you have to cut me a little slack as a mom-- because I'm going to wonder in my heart. I guarantee you would too. When you hear cancer buzz words like genetics and DNA it's hard not to. I also try to see into the future a bit and imagine my Jace as a 6'3" dimple-faced, 18 year old. I'm envisioning the largest party you've ever attended. From west to east coasts, you'd all be invited to celebrate our victory...and maybe not just ours. Maybe we could celebrate for everyone who has ever fought for their lives against this raging monster called cancer that attacks families and homes and communities.

In addition to watching Jace, I'm sitting here wondering from where you all came. Matt and I have heard what you are doing, and we just can't believe your efforts. From praying -- to organizing a dinner-- to setting up a donation account-- cleaning our house-- moving furniture to clean carpets-- running 5Ks in Jace's name-- and creating hand-made bracelets that say Ironman... we honestly just shake our heads in amazement of why we are so fortunate to have the support we have. Honestly, Matt and I don't deserve it-- but I know the real reason you are doing it. It's because you see what we see when we look into Jace's eyes. Thanks again everyone. We really do love you all. 'Night.

Hope, Faith, and Olives

"Fear not, I am with you, oh be not dismayed,

For I am thy God, and will still give thee aid.

I'll strengthen thee, help thee, and cause thee to stand,

Upheld by my righteous omnipotent hand."

These words are running over and over in my mind. Thank you all so much for reminding me that faith and hope go hand in hand. You are right too-- I can't fear if I have faith. I'm going to hold onto this thought, and do my best not to fear.

We feel your prayers. Matt and I were commenting this morning about what good health we are both experiencing. Normally when we crawl out of bed at home, we are both aching and old.:) Here in the hospital, we are sleeping haphazardly and in even worse conditions-- we awake 25 times a night, yet in the mornings, we are revived and well. Only your prayers and pleas with heaven are making this possible. I know this for sure. I can't tell you how much we feel your love.

Okay, so now for the real reason you are reading this blog: Jace.

He is also doing well under the circumstances. He is weak, but happy. He actually ordered olives for breakfast (apparently Chemo patients sometimes crave salt). He isn't nauseated today, and he is enjoying many of the gifts you have brought here and sent here. He is smiling and teasing his favorite nurses and doctors who have fallen in love with him. They have taught him how to squirt water from a syringe, play volleyball with balloons, and operate and place a *port* on a *hospital buddy.* He is far from his spunky self, but he is ok.

This morning he cried to come home. He misses everyone so much. We tell him we will be there soon, but he doesn't realize "home" is going to mean something much different than it did a week ago. It's hard to believe this life education in sorrow and fear-- hope and faith-- started only FOUR days ago.

I have focused on hope today. It is making a difference paired with the faith you all helped me add. So, for the evening, it's hope and faith, and apparently for dinner we are ordering more olives.:)

Fear

Here we are again- watching his chest go up and down. His chemo treatment may start showing some effects, and if you were here, you would see the fear in our eyes. We look over him at each other with that "parent" look and just shake our heads. It's still surreal.

Your messages and comments on the blog are keeping us going. Last night Jace's blood pressure was too high after taking a shower, so he crawled back into bed and we cracked the computer. "Read some more," he says. "Find the one about... remember when so-and-so said this?...they think I'm tough?" You know how you never listen to the ones who are closest to the situation? Like if your mom tells you how amazing you played in a game, you don't believe her because she *had* to say it? Well, everything you tell Jace is reinforcing his strength.

My fears this morning are thick and ugly. Yesterday a nurse had to "gown up" to put chemicals into my little boy's body. We were instructed that if he throws up or pees on us, it's considered hazardous material. We have to wear gloves to hold his bedpan... It is TOO much. I'm not sure why it has to be Jace, but I am starting to understand there is a reason for his spunky personality. He's going to need it.

Thank you to EVERYONE taking care of Hayden. When we met with the social worker yesterday, she asked if we had a burning question to discuss. We tearfully explained that we hated being separated from our other little man-- but as we started telling her about our social network of love, she helped us know he is just where he belongs. Those of you surrounding Hayden with love are my heroes this morning. Last night we heard reports of those of you "keeping an eye on him" and we cried thankful tears. Hayden is such a tender, sweet boy, and we know he will try to protect us from the reality of any pain he feels, so we appreciate those of you calling him and communicating with him. Even though he will say he's ok, we know he is hurting so much.

My favorite word in the English language is hope. This morning I'm going to focus on that word with all of the energy I have. Thank YOU for lifting us and loving us and making it possible to hope for the best.