The Home Life - Here and There

Wednesday, December 16, 2015

Home life has changed drastically in the last two months.  That first week October we went from "life as we knew it" to "life upside down."  Obviously, life changed drastically for Brendan.  But really, life changed for all of us.

 I can't say I even know what life was like at home at that time.  Shaun and I just disappeared.  The morning Brendan had his first MRI scan everything was normal--the kids went to school, I took Aaron to parent-teacher conferences, and Shaun went to work.  Hours later we were in Salt Lake, not to return home for several weeks.  We were extremely lucky to have Chris and Kristen willing and able to move into the house and help keep life running -- I'm sure not smoothly, but at least running-- since, unfortunately, life didn't just come to a screeching stop like it felt it should.  The kids still had school, Rachel and Sarah were still in Europe wondering if they needed to fly home, and housework still had to be done.  

 I think the most obvious struggle for everyone that first month was the feeling of numbness and of trying to understand what was happening. Really, it was just hard to think.   All of the kids (all 9 of them were in school this semester) had a period of time where they struggled with school and the homework required of them.  Here is one of the text messages I got during that time:  "I'm having a terrible day:( I'm doing so bad in school!  I just got all of my assignments back, I've never done so bad in my life and I don't know what to do."

For me, it was important to take care of Brendan, but it was also important to make sure the other kids were coping.  Trying to juggle full-time care of Brendan with keeping tabs of 8 other kids and what their needs were, was probably the hardest but most rewarding activity for me.  I spent lots of time on FaceTime with Sarah (traveling throughout Europe with the Huntsman Scholars) and Rachel (studying in the Czech Republic) and also getting information to Loren and Jamie (law school in Virginia).   It was tough missing the high school and junior high choir concerts and cross country meets, band competitions and concerts.  Then, there was nothing quite like missing my kindergartener's daily drawings and reading practice.

One night, while staying at the hospital with Brendan, just after dropping off to sleep near 11 p.m., I heard my phone beep.  On my messages was this:  "Hi mom!  So sorry if you're sleeping.  First off, I miss you!  Second, do we have any thank you cards lying around?"  I cried when I got this message.  One, because I missed being home, and two, because I was so grateful they would still ask for help and include me in some tiny way with home life.

Brendan's neck scars healing.

One of the greatest blessings we've had during this whole experience was that Shaun's trial - which started the last week of September -- was brought quickly to an end the Friday before Brendan's tumor was found.  Shaun felt pressed to end the trial at the end of the week rather than carry it over into the first week of October (as it was scheduled).  With the jury announcing a verdict at 10 p.m. that Friday night, Shaun went from a 24 hour a day work schedule to having time to take a month off.  In addition, Shaun's great partners in his firm were willing to take his work and help out wherever needed to make life easier for Shaun to be at the hospital with Brendan for that first month of surgeries.

After all of the surgeries, Shaun and I have been able to trade off being at home with the other kids and being in Salt Lake with Brendan.  What a blessing to have someone to help carry this load.  I look at single parents, or others caring for a spouse and realize they don't have the same support or the luxury to trade off for a week.  Theirs is a double duty of taking care of a child or spouse, and still having home life to manage.  That makes my life seem pretty easy.

The craniotomy scars on Brendan's head.

Sarah: This title as it applies to me would probably be more like the homeless life, what with spending time in Europe, my apartment in Logan, nights in the hospital, Farmington, other people's couches, and of course my parents' house. Since October I don't think I've ever spent a whole week sleeping in the same place. So I can hardly contribute to the state of the home life for everyone else, but my homeless life has definitely sharply veered since Charlie's diagnosis.

I can attest to the school problems. I've gotten the worst grades of my school career this semester. School used to be the top priority in my life, and it's just not right now. I know it's been the same for some of my siblings. Plus, coping wise, there have just been so many times I can't figure out why what we're doing in school is important, when the only important thing in my life are updates about Charlie. I stopped reading current events for a week because I couldn't fathom how anything else in the world mattered. Considering I'm an international studies major, that's pretty abnormal for me.

This semester is now over for me, so Monday and Tuesday I was at my parents' house. Mom, of course, was in Farmington with Charlie doing radiation, and I definitely was feeling like we were living in a single parent household. I ended up taking Landon to the doctor's office while my dad was at work. I drove the kids to school after a breakfast of toast and smoothie. (My mom has always made us a hot breakfast like every day of our lives, and toast doesn't count). When we came home in the afternoon, Dad was still at work. Before, it was always such a rare occasion if Mom wasn't home. It's working fine, and my dad is a superhero for feeding the kids, driving them around, and working, but it's definitely different.

Brendan's Day today:

Getting the thick gunk out of his mouth is a daily job.

 Star Wars: The Empire Strikes Back and Return of the Jedi done today.  Still 1, 2 and 3 to go.

 See the perky smile!  Brendan had a good day with much more energy than he's had all week.  He enjoyed opening a 12 Days of Christmas present from his scout group.

 Radiation today was a lot more fun with Lydia, Loren, Jamie and Sarah.  It made all the waiting today bearable.  (Check out Santa in the background!)

 The receptionist at Radiation Oncology brought out this present for Brendan.  It was from the wife of one of their other radiation patients.  We had visited with her a couple of times while waiting for radiation, and she was very kind to Brendan and always remembered his name.  She told him he was a "superhero" and that he was influencing others lives -- including hers.  So thoughtful.

 Tonight was a bonus game night.  Loren, Jamie and Sarah were planning on going back to Cache Valley, but the storm kept them here another night, so they played games.  Whoonu. . .

 . . .Monopoly Millionaire

 . . .and Clue with the cousins.

It was so great seeing Brendan feeling better today.  It's a breath of relief to see him able to keep food down and also get up and move around.  And it's always great to see that smile!