Thomas Explores his Experiences

Our week was full of fun, joy-filled events interwoven amidst medical concerns about Thomas and our walking with Thomas as he delves deep into emotionally processing his hospital stay.

A Musical Selection from Les Mis!

John as Javert

Finally, after months of practice at home and then rehearsals at church, John (14) and Mary (12) got to perform in Les Mis to an audience of about 300! (As this was for youth in a Catholic homeschool ministry, the mature and overly frank topics were stripped out of the production.) After our family was on complete lockdown for months, signing up for Les Mis was our first venturing out of the home, thinking our lives might be stable enough that we might be able to commit to something, our branching out to socialize with our friends.

We were so delighted with John playing Javert!

Mary's age group was in the chorus and she had wonderful facial expressions!

Voice Lessons

Some of the children began voice lessons for the summer. Thomas was so excited the night before that he lay smiling in bed and couldn't fall asleep till 9:30 p.m.!

Thomas's Art

Thomas processes so much through art! Usually when we are reading a book, Thomas interrupts me partway through and says, "I need to get some paper." Then he draws the subject we were reading about. He also brings paper and pen to the family rosary and silently draws various scenes from Jesus's life while we pray.

A train drawn while I read about trains

A crab he painted after reading a book about crabs

Thomas Processing his Hospital Experience

(Note: I got Thomas's permission to share his drawings, etc.)

Given how Thomas's brain works through artwork, it should not have been a surprise when Thomas asked his Daddy to use a photo from his PICU stay and turn it into a coloring sheet, which Thomas then colored in, asking many questions about the various medical devices.

Our son has been asking more frequent questions about his two months in PICU, in particular, and then he tells the stories back to us, as well as telling them to his siblings. This week he asked me if I had anything to show him from PICU times and I confessed that I have an entire Rubbermaid bin full of memorabilia. This collection has now taken on the hushed tones of being called The Memorabilia and Thomas asks for repeated sessions of looking at the items.

Hospital memorabilia

He drew pictures of something that made him mad ("a cancer germ") and something that made him sad ("that I couldn't see my brothers and sisters").

Thomas found a book about cancer from a child's perspective and, after I read it to him, he is having each of his siblings read it aloud and is then interrupting repeatedly to tell them how his experience was the same or different.

Thomas has begun adding more detailed drawings to his Doctor Book.

Thomas in PICU, showing details such as all the IV lines, Mama sleeping on the couch beneath the window and with the bin of stuffed animals at her feet, and the art projector he received for Christmas projecting a drawing on the ceiling.

Thomas looking down from the 11th floor on the road, parking lots, creek with a duck, and seeing his Daddy and the S--- family drive by with signs and release balloons . . .

"Mama, how do I spell, 'God help me'?" This was his poignant caption for a photo of himself in a hospital with Jesus standing nearby. Not "God Helped Me," the description, but "God Help Me," the beseeching prayer.

"God Help Me"

Our little pumpkin had been sleeping very happily in his little bed in our room, but this week has begun spending all his time sleeping between us . . . in fact, squeezed up against Mama all night and basically resting his head on my head and one leg flung over my body because anything less close just isn't close enough.

Within the house, Thomas is deceivingly independent: he wanders wherever he wants and does not appear at first glance to be overly attached to me. However, as I've started to attend some appointments of my own and am sometimes gone for one hour or a bit longer, he reveals how distressed he is, calling me crying. He is expressing a lot of fear about the possibility of my not being here. I had thought I could pursue a certain change in routine that would have me out of the house this fall for a couple of days a week, but Chris and I rapidly realized that just is not prudent or in his best interest. We want Thomas to have freedom this year to grow to independence at his own pace.

Clearly our brave fella is feeling ready to examine his traumatic experiences at a deeper level and we expect nothing, are open to anything, and imagine there will be additional Big Emotions on the horizon.

Miscellaneous Moments

I have received a special breakfast made by a particular child two weeks in a row! (No, I do not eat a huge breakfast like this!) 

Pro Parenting Move: This week, Chris was taking down a hedge so came into the house and asked enthusiastically, "Who wants to help me look for baby bunnies!" The 8- and 3-year-olds ran outside eagerly. Dad instructed them that baby bunnies might be hiding under this big pile of brush (the clippings) and to move the pile across the yard (to the refuse area).. These little boys moved the whole thing, hoping to find baby bunnies!

Thomas as a Daddy Sloth holding his Baby Sloth! (Thank you to our friend for the blanket!)

Super hero brothers!

The Physical Therapist suggested getting Thomas a scooter as an intermediate step to him learning to ride a bicycle again at some point.

Medical Worries

There is never a dull moment. After experiencing his most stable three days in a row yet, on Wednesday Thomas began having concerning GI symptoms which have continued for three days. His surgeon and GI doctor are aware and communicating with us. There are hypotheses for what is going on, but tests would need to be conducted. It is not an emergency, but it is painful for Thomas, disconcerting for Mama and Daddy, and nervous-making, especially in light of some upcoming travel.