My Gratitude List for Today
Caring Bridge limits me to five pictures per post, so this is a two-part post so I can include more!
We are grateful for Chris' employer. His company, managers and co-workers have been supportive. Chris is encouraged to have a "work-life balance," which can mean sometimes working in evenings, or working from a hospital family waiting room, but also applies to taking time to tend to a sick child.
We will likely be buying a small second car and we are grateful that (while we had not expected this expense) we are able to rework our budget to make that happen. Our big van does not fit at the hospital parking garages, nor would I want to frequently be leaving babysitters or one parent at home with all the kids and without a vehicle to drive them. Our other car doesn't technically belong to us, it is Chris' company car.
We are grateful for Thomas's siblings and all their separate hearts, minds, and emotions. They are all processing this differently and it is still very new information (and even more limited info for them). Two siblings have been sleeping in the boys' bunk room since Diagnosis Day--just to be close to Tom all night. They worked cooperatively on a project today to sew a teddy bear by hand for him. Our seven-year-old is struggling most visibly right now because he is really so very young, and his reactions are raw. I am grateful for Chris being very sensitive (when we parents could easily get mad at another child needing us right now): This morning, Chris got our family doughnuts to celebrate Thomas going through "the doughnut machine" (CT scan) and took Joe with him. Then he took Joseph for a special daddy-son drive down to the hospital grounds and complex just to walk around and show Joe where it is his parents are disappearing to so often.
I am personally grateful that I quit coffee only a few weeks ago (which my blog readers know about!). I was doing it for weight-loss reasons because I only drink coffee if it is laden with several teaspoons of sugar and numerous tablespoons of half-and-half. Then I drink several cups per day. I've never even tried to quit in almost 30 years, but I quit cold turkey and it was an entire week of terrible withdrawal symptoms before it even began to subside. Now I feel great, I'm drinking only black tea, only one or two cups, and I'm no longer craving coffee. You know why I'm grateful? Because when you're addicted to coffee and you're a parent in the hospital where coffee is undependable in its availability and perhaps awful tasting, it's even worse! I'm happy for this tiny grace to be facing significant hospital time free of that one addiction.
I'm grateful for a neighbor who quietly hid a love note for Thomas in our mail box.
I'm grateful for Thomas himself. The precious boy is processing his big day yesterday. He has been carrying Ducky with him nonstop since he received it on Sunday (thanks, C.H.!), all through the hospital (where he would not even let us put it in his backpack) and at home. What is interesting is that he has never been a kid to carry around a stuffed animal: he just has a favorite one he sleeps with, but even then is take-it-or-leave-it.
When Thomas woke up and came downstairs this morning, he hugged me but then wanted me just to sit on the couch and hold him for what ended up being about 15 minutes. (That was my prayer time but I think God accepts my prayer offering being ministering to my boy.) He hasn't done that sort of things since he was two or three when it was our normal wake-up routine! I just sat silently rubbing his back and he began processing out loud.
"Mama, today I'm going to make a Doctor Book about veins. I'm going to draw pictures. People don't know about veins."
"That sounds like a great book."
"I need blue to draw the veins, but the blue crayons are too fat."
"Maybe you could use a blue colored pencil."
"Yes!"
"Would you like sister Mary to help you?"
"Yes, I will have her write the words for me."
Later at breakfast, Thomas suddenly wanted/needed to tell everyone about his day, which I realized he had not done when he got home so tired the day before. I made sure everyone was quiet and Thomas jubilantly told them every single aspect of how an IV works and about the CT scan that looks like a doughnut but isn't one.
A child so young as he is going to say things at seemingly random times when one of us is quiet enough to listen, which is why I am so grateful to be here all the time. For example, last night at bedtime, Thomas said out of nowhere, "Mama, it's normal for a tummy to have lumps!" He paused, and I felt moved to pause also instead of to reply/correct/contradict. Then he said, "But it's not normal to have a lump that is growing." He is processing.
Speaking of the bad IV experience, I am so very grateful for a new procedure tomorrow! Our contact Teri at the pediatric oncology clinic (we were given her direct line as a 'Bat Signal' to call her always!) is having us show up early and visit the clinic first for Thomas to get his IV. Dr. O. says that his staff is "much, much better" at putting in pediatric IVs because they do it all the time for oncology kids. Also, the Child Life Specialist Thomas loved meeting most (Miss Haley!) is going to be brought in on purpose at that time to help. Tom will get his IV there, then we will walk over to the next building for his first testing procedure. Also, he should be able to keep his IV overnight (at home) so he does not have to get one the next day.
I'm grateful for the meals pouring in.
I am grateful for a "medical mom" whom I've known for 13 years but is now a gift to me in a new way. She has numerous kids with complex medical needs and probably should have a suite named after her at her local children's hospital due to how much time she has spent there. My friend J.S. is sending me much advice about how to protect my child and get him what he needs. (Like, how long would it have taken me to figure this one out: When staff is about to place an IV, ask beforehand, "Are you the most experienced and best person to be placing this IV? Is there anyone else on shift right now who might do better? Please go get him/her.") She is giving me much golden advice about how not to get overwhelmed, how not to think ahead (how will I homeschool this coming fall?), how the most important thing is love, loving each other, coming together. I know I could call her day or night with a medical mom question.
I am grateful for Child Life Specialists. Seriously, I have now looked into the career requirements and salary in hopes that one of my daughters might consider going into that field combining an interest in medicine with an overwhelming caregiving spirit for the most vulnerable among us. Child Life Specialists are such a gift, I really can't voice how much help they bring to a child. I am also grateful for Child Life Specialists who have made various videos of "what to expect" and posted them online. We showed this one to Thomas to prepare him for his next visits when everyone around him will be wearing Personal Protective Equipment.https://www.youtube.com/watch?v=giXRodOW_R0
I am grateful for a mother of 12 today who dropped off a bag of sacramentals. These "goodies" (rosaries, crosses, holy cards, etc.) were from all over holy sites in Rome and France and were touched to numerous of the holiest of shrines, making them second-class relics many times over. Thomas and I are overwhelmed.
I am grateful for our hairdresser S.L. The boys had the misfortune of only having me trim their hair during the coronavirus lockdown and they had not yet had their hair neatened up by a professional. Well, a lovely woman whose husband earlier went through late-stage cancer has gifted us with a lifestyle session with the professional photographer we have used in the past--and I am so grateful to this friend because we would not spend so lavishly at this time, nor we would have thought to do this! The photographer will be coming this weekend to photograph our family in happy moments, with Thomas in innocence and joy, before surgery, before chemo, before radiation, and before their effects. When we contacted the hairdresser this morning, she said the salon was closed for today, but she would meet us down there and cut all the boys' hair. Then she offered to come to our home when it is time to shave off Tom's hair falling out from radiation/chemo . . . an offer which slayed me inside because I never realized I would have anything to do with the loss of his beautiful baby hair.
I am grateful for Chris' spiritual guidance. He has initiated family nightly veneration of the relics on loan to us, in particular the piece of the True Cross. Then Thomas hops up on our bed and we touch the relics to his belly and then anoint his belly with the oil of St. Philomena.
Your Cross
(a prayer by St. Francis de Sales)
The everlasting God has in His wisdom foreseen from eternity the cross that He now presents you as a gift from His inmost Heart. This cross He now sends you He has considered with His all-knowing eyes, understood with His divine mind, tested with His wide justice, warmed with loving arms and weighed with His own hands to see that it be not one inch too large and not one ounce too heavy for you. He has blessed it with His holy Name, anointed it with His grace, perfumed it with His consolation, taken one last look at you and your courage, and then sent it to you from heaven, a special greeting from God to you, an almost of the all-merciful love of God.
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