Fightin’ Words
Life continues to move forward in the most normal way. Austin had a chest CT today and it was the first time in the past two years that any procedure went more quickly and easily than anticipated. We’d decided to try it without sedation since it would be so fast and he didn’t require any IV contrast. We brought him down to the basement of the hospital, to a room he’s been in dozens of times before but has never seen because he’s always been sedated. Well, this time he and Mark, who met us on a lunch break from work, were playing catch with his new bouncy ball while we waited. First patient up was Austin’s beloved stuffed Cookie Monster so he could see how it all worked. Then our little guy was on the bed, strapped under the “seat belts,” with Daddy on one side of the scanner and Mommy on the other, both holding his hands. The woman working the machine talked to him through a microphone, telling him to smile and “Say cheese.” Assured he looked handsome, the whole thing was over in two minutes. Mark and I actually laughed and said. “See? This is going to be a piece of cake.” If only.
We should get results from the scan this afternoon, which we fully expect to be negative (heard that before?). And probably more news and recommendations in the next few days.
So now he naps and I am back on the computer, getting my digital therapy through writing and reading your responses. The outpouring of love and support and kindness has been, yet again, overwhelming. Many of you have apologized, either for not knowing the right words to say or not being present to do specific tasks or for feeling paralyzed with sadness and fear. Please, no apologies, people. You are out there and we feel you. There are no right or wrong words, there is nothing specific anyone can do to ease this path for us short of just being there, wishing for us, hoping for us. That is what makes it bearable.
You tell me that I’m strong and then I’m strong, you tell me Austin’s a fighter and then he fights, you tell us we’ll survive and we survive. It’s good enough, what you do. Reading, wishing, hoping, praying, crying, sharing, whatever, it means something to us, even if we never have the chance to tell you one by one.
I got a message today that talked about the sharing of grief, and how other people were willingly shouldering some of the pain and the fear for us. It’s like a big trade-off: friends and family and perfect strangers stepping forward and saying, “Here, give me some of it. I’ll hold on to your pain and your fear and your sadness and in return, you can have some of my strength and my energy and my hope.” A give-and-take, you are doing your part too.
I’m not particularly militaristic. Well, I’m not at all militaristic, but the battle analogy is just too apt to let go. We are preparing for battle yet again and our army is gathering behind us. Some of you will be on the front lines, engaged in the day-to-day combat. Some of you will be behind the scenes, cooking and cleaning (literally!). And some of you might just be the old-school colonial-style drum majors and trumpet blasters, rousing us for battle, cheering us on, creating enough noise to drown out the heart-thumping fear.
And you all have signed up for this, volunteered. You could walk away, say, “No way, I can’t even follow that story anymore. It is too damn sad.” But you don’t do that. You keep coming back for more, re-enlisting, another tour of duty. And you put yourselves at risk, right in the crossfires, because the more you read, the more you care and then you too stand to lose. I gave our babysitter an out the other day, told her she didn’t have to do this if she didn’t want to; she could cut her losses before things get too ugly. But she refused, stood her ground, right here beside us, wedged between Braedan and Austin, ready to go wherever this road takes us.
Austin’s Army is gathering, standing behind us and around us, ready to fight.
Damn straight. We are certainly here! Ready for whatever you need.
THIS is the one that made me weep. I guess that just means that you are feeling a bit stronger. The give and take. This is the one time I will say that my family is happy to enlist in the army!
Love,
Christie, Dom, Lola (who told our new babysitter that we need a babysitter because Gramma has cancer and because Austin has cancer) and Olive
Still wishing, hoping, and thinking positive thoughts! Austin is such a tough boy, he’s a fighter.
P.S
I don’t know if you noticed but the other night Austin insisted on choosing his pajamas (as opposed to the ones you laid out). Of course, I let him decide on whatever he was most comfortable wearing. It turned out to be knee length brown socks (of which he kept saying “so long!”) truck pajama pants, and a pajama shirt with sharks all over it. He fell fast asleep soon after! Hope it gave you a laugh. See you and the two best boys in the world soon.
I am Kay and my mom is Jeanne. Jessica Horn has invited us to inlist in Austin’s Army. We have a house of prayer in Minnesota and we will suit up with our armor and storm heavens doors. We will be praying for Austin of course but also for the entire family. Is there anything special that mom and dad need? God Bless you all. Stay strong and trust Our Father.
Hi Krissy,
Your babysitter, Julia, is my best friend so I feel like I know Austin because I get to hear all the funny and cute stories about him! Your boys are really sweet and I just wanted to let you know I have been thinking about Austin everyday and hoping he gets all better very soon.
My thoughts and prayers are with you guys.
Dear Krissy and Mark,
Sigh………..truly disappointing news. I am so sorry and saddened at this report.
The best thing Austin has going for him is the two of you. He really lucked out in the parental unit department receiving not one, but two amazing units. Your strength individually and together will bolster you for the good fight.
On days when you can’t be strong, rely on us. There are so many waiting in line to send prayers, energy, good thoughts, food, childcare, cleaning and other good things. Whatever you need, let us know. It’s what we can do and want to do. It helps empower us, too.
Sorry it’s taken so long for this responce but I’ve been wracking my brain for the best way to enlist in this gathering core.
DUH!!!!
You have taken so many pics to keep us up to date and connected but you may find some days when you just don’t feel like it, might like another perspective or just want to be in some of the pictures, too. Let me help, just ask. It’s the best gift I have to offer besides my very best wishes and lots of love,
Chris