Monday June 22, 2020

We have been absent from our family blog for one month exactly as our son Thomas was diagnosed with cancer. We were publishing over at CaringBridge (https://www.caringbridge.org/visit/thomaslauer/), but are now going to try to bring the two together seamlessly in order to continue the family blog I have written for 14 years. This blog post is copied from CaringBridge and is being published retroactively. Please subscribe to our family blog to receive updates as I publish!

This morning, I tried to take an exercise walk in the cul-de-sac to Be Normal, but it turned out to be a lost attempt with kids constantly needing me (go back and get shoes on, don't step in that red ant pile, do not climb on top of the van, what you're doing with that rake is dangerous . . .). However, while I was galumphing along out there, lovely D, whom I haven't seen in years, walked by with her dog. D has had cancer herself and told me that she is having Father M say a Mass each for the eight members of our family because it will become so important for those around Thomas to receive extra graces, and she said she is planning to text me a tiny encouragement based on what she has learned about cancer--maybe even daily sometimes. I had thought it was pointless that I tried to go on my walk, but God rewarded me with more than the exercise I was seeking.

I spent Monday organizing: I designed and printed out a weekly homemaking schedule for all the children. I trained one child how to do the little boys' laundry in my absence and tomorrow plan to train another child how to do Mom and Dad's laundry. I am trying to level set my expectations closer to what the reality will be than the hope I feel, but I do note that they are "stepping up" well so far! I began labeling everything I thought would be useful (e.g., which bureau drawers belong to which little boys and what sizes they wear). I posted little instructional signs around the house (e.g., standard lunch ideas). The main babysitter who is scheduled to help us during the first chemo cycle came by for an orientation.

A representative from the Children's Cancer Partners of the Carolinas called me for our intake interview. Their organization's mission is so purely kind, I cried to be a recipient family. Nineteen years ago, the founder wanted to help one specific family with cancer expenses and he was not a man of means, but he knew how to raise money. Since then, his organization has helped 1,000 families experiencing children's cancer. This privately funded group will pay for our travel expenses to all cancer appointments (e.g., gas, parking) and pay for Thomas's and one caregiver's meals on clinic days and in-patient days until age 21. Even though the hospital provides hospital food, the organization recognizes that it is very hard to get kids on chemo to eat, so if I wanted to procure him that one milkshake or particular food from a restaurant that he would eat, they will pay for that. If we have to get care out of state, they cover that travel. If the patient becomes free of cancer, he still gets quarterly scans and this group continues to pay travel and meals for those appointments till age 21. They also host family summer camps, a Christmas party, and other social gatherings, all free, for us to attend till Tom is 21, even encouraged after he is well. All the social festivities include parents and siblings because pediatric cancer is a family event. The founder of this wonderful charity is in his 80s and still processes the receipts families submit. That man has done something very good with his life.

Today was the sixth day post-op and our surgeon assures us that Thomas would be safe taking a short swim, so despite my desire to keep him cocooned in cotton for weeks, he went swimming and had a wonderful time, with no harm done to his healing incisions. Of course, he is tired much of the day and we can tell it is not 'normal tired,' so he was crabby and fast asleep by 6:30. I lost count of how many times today Thomas told me while fussing, "I just want you to hold me forever, Mama."

Thank you to the P family for delivering a meal to us today so I could focus on organizing and slip away to be tearful sometimes. Once I even went upstairs to set some items on our bed and, in setting the items down, I simply fell asleep there for half an hour.

I was grateful to read aloud Narnia to Joseph (7), get him tucked in, and then read aloud Pudd'nhead Wilson to the oldest three: A little bit of being normal.

Chris and I can see what we think is God orchestrating in two different areas right now, as for both of these issues we can see improbable 'coincidences' and elaborate 'connections' that ring of the Holy Ghost. We will do our best to cooperate with God's will and I, for one, would be thrilled in future to share how those two stories play out in order to give God glory.