Gloria in Excelsis Deo: Day 69: Mama Finally Holds her Son

Duplicated on our CaringBridge site for permanent record here.

January 25, 2021, written by Mama

69 days in the hospital: 63 in PICU, 6 in the Oncology ward

It took 69 days, but I finally got to cradle my son in my arms again. There were many dark days in the PICU when I thought the only way I'd be able to hold Thomas again is if he actually died and they finally handed him to me. We have walked through the Valley of Death.

But first, let me share all about Thomas's day!

In the morning, the team put Thomas into his chair and wheeled him down to the play room, him driving a remote-controlled car all the way there.

He played with toys, played a game of dominoes (note how far forward he is reaching: this is increasing strength), and made a snowman out of Play-dough.

However, what he kept requesting was, "I want to try standing." Over and over. The Occupational Therapist was very supportive in order to encourage his efforts and bravery, not because she thought he could do any part of standing yet. I don't have any photos because two therapists and I were all using our hands as part of the effort. Even with Thomas being completely supported, just having his feet flat on the ground made him wail, "Why do I feel so heavy?!" and he began crying anguished tears. The therapist confirmed with him that he was not feeling any bodily pain, so we all agreed quietly that these were tears of the heart. Thomas was ready to get back into his chair--"Mama, please dry my tears."--and he went on to have a great play session.

Thomas decided to draw and then paint a bass violin: note the pencil drawing!

After two whole hours sitting at 90 degrees (!), he still wanted to keep playing but I told him we needed to head back to our room to do body care and medicines before nap time. This was the first day he was not falling asleep naturally by noon and I had to convince him that he needed to take a nap. Thomas's endurance is growing every single day.

After his afternoon appointment with Speech Therapy, Physical Therapy came to have Thomas try using the Magic Standing Table, as it is called colloquially around here. I am learning that there is so much more involved than simply weak leg muscles to get a patient bedridden for two months to stand once again. Even the proprioception involved in the soles of his feet touching a flat surface needs to be stimulated and practiced. Also, Thomas's circulatory system will need to learn how to do its job with him vertical rather than horizontal. (When we came back from sitting in a wheelchair for two hours, his feet all cozy in socks were still so very chilly because of circulation slowing down.)

Thomas wore shoes for the first time!

Thomas is always reaching for more. Instead of just standing on the Magic Standing Table, Thomas said, "It has wheels. I want to go over by the window."

We wheeled him across the room to the window, to which he immediately said, "I want to sit on the couch."

I thought that we certainly could do no such thing when the Physical Therapist said that he could sit on the couch if I held him, and did I want to do that?

And that is how I was completely blindsided by getting to hold my son after 69 whole days. I remember when we met with our surgeon a few days before surgery. I asked how long it would be until I could hold him and the surgeon told me that it was very important for healing and morale for parents to be able to hold their child, so he hoped it would be within just two or three days. At the time, I didn't know how I would bear going that long.

If God told us the crosses we would be asked to carry, I don't think most of us could get out of bed.

Today I got to hold my son for almost two hours. I cried and looked far from glamorous, but I treasure these moments memorialized.