Unexpected Sorrows

Our family is experiencing new sorrows this week. Nine months after Chris's mother passed away, Chris's brother Timothy passed away this week. Our entire extended family has experienced a lot of strain this year and we all pray that these trials allow us much clearer vision into the four last things we Christians are to meditate upon daily (Death, Judgement, Heaven, Hell) and help us each to choose to love better, embrace more patience with others, and endure longsuffering. Our hearts ache at the permanency of death and we pray for your prayers for the happy repose of the soul of Tim as we prepare to travel out of state for his funeral.

We had an hourlong, in-person follow-up with our surgeon this week and, after working through all the current issues needing attention, we spent some time reviewing Just What Happened. I won't speak for Chris, but will say that I am only now, home for three weeks, finding myself able to start to examine parts of Thomas's hospital journey, things that apparently I was psychologically protecting myself from as they unfolded. For the very first time, I asked our surgeon, "How close did we come to losing Thomas?" He took the question seriously and answered thoughtfully that due to the complete failure of five major organ systems (kidney, liver, pancreas, endocrine, and GI), any one of which could have caused death, Thomas's chances of death had been "way more than 90%" . . . and that was before his organ death and ten additional surgeries over the course of three weeks. We were living very publicly online so maybe some or many of my readers would have guessed that, but Thomas's own mother was ignorant of such a number. Completely ignorant. No doctor ever said, "It is most likely your son will not survive." I've been experiencing a new and deep grief this week trying to process what that percentile meant back then and means now.

Meanwhile, a family within our church homeschooling group is now suffering with their 17-month-old in the same PICU where we lived for two months. Little B. is fighting for his life in the most serious sense of the phrase. I won't share their private story on our family blog (and most of my readers know it!), but I will say it is stunning for our same small community to have two children (our Thomas and now their B.) in a short span of time walk this close to death.  (If you are on Instagram, you can follow at Stephanie Weinert.) I think our entire community is learning more than ever about pragmatic community support, God's providence, self-sacrifice, the value of each soul, and the meaning of suffering. Neither I nor my mother-friend would have raised our hands to volunteer to walk the road of our sons' suffering so that others (and ourselves) could learn so many lessons, but through our tears we can certainly see and rejoice in God's hand working in our community.

Our hearts grieve.

Miscellaneous Moments

How do I express that homeschool isn't going so hot without maligning my kiddos for not just completing their lists independently like happy little robots? It turns out that students really do need a teacher . . . and I can't be much of one right now! I wish that being stretched thinner than I thought possible meant a resulting physical thinness, but it usually means being unable to pay attention to proper eating and becoming thicker than ever--ha ha!

I was telling a gal pal about my Friday when I was on medical phone calls and emails from 9:00 a.m. to 1:00 p.m., on a medical Zoom appointment 1:00 to 2:45, then in physical therapy 3:00 to 4:00 before I collapsed on the couch and our teenage son made frozen pizza dinner for us. The gal pal said surely that isn't typical and I replied, yes, it is, except that some days we have two or three medical appointments instead of just one. I'm so far behind on medical paperwork (Social Security, Medicaid, trainings) that my desk has been buried under a mountain most of the week.

All that is to say that I can't teach or supervise school properly now and I'm still resisting that reality. I will understand this better later, but I can see already that cancer truly is a nuclear bomb within a family after which one needs to rebuild. 

Thanks to the two big sisters and the babysitter helping to fill my shoes, Thomas got his school done daily, which is wonderful after missing much of his Kindergarten year.  Thomas read his first story from a reader this week and told everyone who would listen!

Proud of himself and acting sassy!

I read about Jean Henri Fabre to the little boys one bedtime this week so Thomas was inspired to start illustrating insects . . . and then later birds!

Drawn by Thomas, labeled by Mary

Drawn by Thomas, labeled by Mary

Thomas's daddy showed him a video of how stained glass is made, which launched Thomas creating his own stained glass art throughout the week.

While Thomas was in PICU, the darkest times, we lost both our piano and violin teachers, which was an added stress to our family which has had music as a focus of our education for all these years. These won't be forever solutions, but we hired an accomplished high-school violinist to teach the girls (and they love working with her) and just this week we hired a young piano teacher who is launching her studio. This was Thomas's first ever official piano lesson and he was so excited. He asked to dress nicely in khakis and a "Mass sweater," and said to me, "Now, get me my mirror and hairbrush." 

This week I took a few walks, am in the midst of reading a historic fiction book and an autobiography by Ben Carson, M.D., prepared some failed meals, drowned in laundry, finished another 500-piece puzzle with the children, went to sleep with messy rooms nightly, and had some massive meltdowns into the black abyss.

Eating

Eating by mouth is a serious struggle for Thomas right now and I ask for your prayers. This process could take months or years or forever.

Physical Therapy Progress

Thomas is growing stronger every day and is newly showing pride and eagerness about his accomplishments. He crawls around the house, including up and down the stairs. He can walk short distances (e.g., 10 feet) with the walker. We discovered this week that Thomas can stand completely independently for 20 seconds. He started for the first time to take steps without a walker, instead with the therapist's hands on his ribcage using "moderate assist."

My head swirls constantly wondering how to live in acceptance and peace with God's will (whatever that is), but also to experience hope and devote time, energy, and money into helping Thomas recover. I'm reading a Christian book about suffering right now and anticipate needing to read many more in the coming year.

Playing lawn tennis!

Thomas singing to his physical therapist

Thomas standing without touching anything for 20 seconds

Thomas lifting four pounds

Thomas standing to draw on the windows

Thomas walking with moderate assist

Thomas is working so hard growing in physical strength . . . and it tuckers him out!

Asleep on the exercise mat, snack by his side