Before I get into the meaty substance of this post, I will warn you loyal readers that there’s a few details in this post that are a bit… much. You’ll see when you get to them. If you’d rather stay warm and fuzzy, you might want to skip this post.
But of course, you clicked through voluntarily….to a blog about a family that’s taking care of a kid who is dying, albeit gloriously and happily. So. You probably weren’t looking for warm and fuzzy, but Real. True. Honest. I’ll do my part on all three.
People keep emailing us, calling us, texting us, FB messaging us (my, my…we have so many ways to communicate these days, and I’m not even listing them all!) and wanting to know “How are you doing?” My response to each of those queries is the same, we’re as good as can be, given everything going on.
…and we are. Really.
I can’t speak for Shelley, but I’m profoundly unhinged right now, unmoored. Adrift.
For the past two+ years, I’ve had a schedule, a structure. I take care of my girls, then I go to work and take care of my kids. Work, home, work, home, rest. It has a pace and a structure that are exhausting, yet profoundly comforting. It gave me a constant source of positive/affective support that I could count on daily.
Now that I’m not working, and don’t have that… it’s profoundly unsettling in some weird ways. That’s not to say that I don’t enjoy the living crap out of being home every day with Amie, making videos, making her smile, cuddling her to sleep most naps and nights. I do. It’s the stuff of legend. But that’s the entire kit and caboodle right now, and my brain doesn’t have much else to focus on…but death, dying, survival, and the process of the previous three.
As a total aside, I have no idea how Shelley has done this for the past 2+ years. She quit her job immediately after diagnosis in September 2012. (To be precise: she went on FMLA, and then quit when her time to come back to work came due, but I digress). This has been her whole life, for the past 26 months, and I’m not altogether sure I could have done what she has done. Moving along…
Being at home each day, in some weird way, is this weird waiting game. We know she’s going to die, but we have no idea when. I find myself, at times when I’m off in my own head, thinking about life after cancer. Thinking about what possibilities are going to be there for us as a family to travel again, to live again….without being tethered to cancer treatments. I barely even remember what the hell that feels like.
But then I immediately snap back and feel really crappy for thinking that, because in a sense I’m looking forward to her death in having those thoughts. But then again, having those thoughts is completely normal, wishing to have the life back that was taken from you. It’s…surreal.
We’ve gotten a lot of inquiries into people wanting to set up times to come visit us…a lot of them. We’ve quietly declined most of them, and we wanted to kind of explain what Amie’s days look like, so that you can see why most of the time, bringing people into her life right now is really hard, and not so practical:
5am - 7am: Amie starts coughing. This is not a normal cough. It’s a profoundly unsettling cough. It’s a “grandpa who smoked for 40 years” cough. She starts coughing, and you can hear her fighting to get a breath back at times. She does this for several hours each morning, as she’s getting close to waking up.
Marsha has listened to her lungs several times, and says they are clear, so it’s not pneumonia developing. Dr. Robertson said that for people on such intense regimens of radiation, they can sometimes have bits of tissue and fluid leaking from their lungs which come loose and cause coughing like this. She just needs to work through it.
I cannot explain to you how awful it is to hear your 4-year old daughter have emphysemic coughing jags.
7am: Amie wakes up. Many mornings she wakes up in a massive pool of her own urine. We have no idea why she’s not going to the bathroom during the day. We take her multiple times a day and have her sit on the toilet. Most of the time she says that she doesn’t need to go.
7:01am - 10:30a: This is Amie’s prime-time. She’s energetic, funny, alive, and wanting to play/craft/interact. We are not sending Anya to school in the mornings right now to take advantage of this time.
10:30a - 12:00p: Sometime in this magical window, Amie fades. She starts getting grumpy, touchy, and overall wanting nothing to do with people. That means it’s time for snuggle time, and then a nap.
11a: Anya goes to school. Usually I take her.
11:30a - 2:00p: Amie is sleeping. Hardcore sleeping. Once she wakes up, she’s not overly energetic…but she’s awake. She might do a little crafting, or maybe just snuggle on the couch.
3p: Shelley heads to the hospital to get radiation with Amie.
4:15p: I pick up Anya from school.
5:30: Shelley and Amie get home from radiation at Mott.
6p: Amie goes to sleep.
As you can see, adding anything into this schedule is…. hard.
Right around when Amie turned 2, Grammie made Amie a Kitty dress. As you might imagine, she grew out of it, as she's now 4+. She got the new Kitty dress a few weeks ago, and Grammie made another one for Baby Jumping. SO CUTE.
Amie and Baby Jumping can now wear matching Kitty dresses, as well as matching cupcake hats.
Steroids. Not sure what the difference is between the steroids that bodybuilders use (illegally?) and the steroids that Amie is on, but she's poofy. Hella poofy. In order to fit her radiation mask, they've begun giving her a "Snowman beard" to help with discomfort.
A week ago, we went and cut down a Christmas tree from Broadview Christmas Tree Farm in Highland. It sat (well hydrated) in our garage, waiting for today.
Ya see.... putting up a tree is an event for the Shelley. She starts off with a bare tree.
The kids need to be taken out of the way. I ensconced them in Anya's bed, wrapped them in blankets, gave them treats, and gave them an iPad. 'Nuff said.
Once Shelley had the lights up, it was time for the kids to put on ornaments.
The final product!
(edit: Shelley says she looks crazy in this picture, but I told her to do her best Vanna White,
and she did....hence, the crazy.)
Once that was done, it was time for a Jet's Pizza and breadstick picnic!
This is another of my far-too-long posts. So I'll end it here. I have more to say, but I'll hold that until the next one.
Thanks again everyone for your support, for your thoughts and messages....sincerely. :)