Tuesday, February 7, 2023

What Is Even Possible?



I used to write publicly a lot because, as a young mother, I thought I had a lot to offer. Once I realized I couldn't write anything inspiring anymore--words that help my peers in their walks by encouragement, practical help, and ideas--my writing developed to insipid reporting of events.

My homeschool for the Elementary boys in particular has felt like such a flop this year 2022-23. I thought this was the year "We'd Be Back!" (cue triumphant music) but instead God has repeatedly just put me back in my place. I don't even know where "my place" is anymore because I thought it was to put all my talents and treasure into running an excellent homeschool so my kids would be financially and socially successful in this life before going to heaven in the next life.

Monday was actually a more successful academic day than usual, and a typical day in terms of medical duties. We constantly take two steps forward, one step back . . . or two or three steps back.

I'm trying to manage six grades spanning Kindergarten through tenth, which I imagine would be hard under the best of circumstances. Meanwhile . . .

  • Sunday night I got better sleep than most nights, with Thomas needing my assistance only once overnight (not several times as is common), and neither his pump alarm nor glucose alarm blaring repeatedly (as is typical). Most of the time, I'm operating on very fractured sleep.
  • I spent 20 minutes putting on Thomas's new continuous glucose monitor, which gets changed every 10 days.
  • I had repeated text exchanges with his surgeon on numerous important topics, trying to figure out problems.
  • I emailed with a nurse to schedule with Hematology.
  • I had several email exchanges with his Oncologist.
  • I initiated a phone call researching about a new Hematologist.
  • I called to schedule an appointment with his Hepatologist.
  • I stayed on hold on the phone for a very long time to his continuous glucose monitor company about a broken component--and I never got through.
  • I had a phone call with his Medicaid CAP/C employment company about missing code numbers ("try back on Wednesday . . .").
  • I had an email exchange with his Medicaid case manager to schedule Tom's annual review meeting.
  • Thomas needed my help with medical distress a couple of times.

Every day starts and ends with my drawing up a bunch of meds for him. Then twice during the day, my alarm goes off for his mid-day meds. Currently, that includes antibiotics, which he is on for three weeks straight, as he has been battling a recurrent infection of cellulitis and abscess--something those who are immunocompromised and who have iron-deficiency anemia are susceptible to. And because of the particularly powerful antibiotics he currently requires, now I will have to watch out for the next couple of months for C. Diff developing. Who knew? I learn something new every day.

Monday was not a day I invested time in managing the data I collect about Thomas's ins and outs and growth to help his doctors figure him out, although I spend time on that a few days weekly. It was not a day I read medical journal articles, although I average 5+ hours per week doing that. We did not have to go to one of his many doctor's appointments, each of which eats up a half day of school. I estimate Thomas sees his team of 9 doctors in 20 appointments per year. He's just been assigned to an 10th specialist, which will add at least 4 appointments per year. Those numbers don't count any sick visits, ER trips, hospital admissions, standard visits to the lab outside of appointments, or at least twice monthly visiting the pharmacy across town.

None of the above lists all the regular work to educate the five other kids, feed the family, clean things, do laundry, manage eight schedules, and so forth.

Monday was actually one of our most productive days in school in a while, but does that mean we finished our normal lesson plans, which have already been simplified and pared down REPEATEDLY over the last six months? No, we did not. We never finish our daily list and what we accomplish is squeezed in the cracks between my Medical Mama Bear duties that I never anticipated. 

All I know is that I want to run the kind of homeschool that turns out smart, educated, practicing Catholic young adults who can be successful in this world while also getting to heaven; and I feel like I'm just not woman enough to do that given my new life. What does God want from me? It's fine if God wants me to be small and a failure, but why would He want me to fail (daily) the husband and six souls he put in my care?

I'm in no position to inspire or help anybody anymore. All I can do is offer compassionate company to other parents who feel like they, too, are required to accomplish the impossible.


3 comments:

  1. Praying as Our God has you and your family pressing on!!
    So blessed to be a part of your Prayer Support Team.

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  2. Your kiddos seem to be smart, loving, compassionate, curious, and committed. They will be ‘successful’ in the most important ways (and less important ways, as well). These first 18 years are important, but remember that they will learn and educate themselves throughout their lives. You are giving them this example. They are also learning through your witness that they can do ANYTHING, even things they NEVER expected to do. My prayers are with you in this seemingly impossible journey, wanting to do your absolute best for every member of your family. Our Lord doesn’t love us because of our actions or ‘successes’. I pray that God gives you the peace to know that you are absolutely PERFECT in His eyes. YOU are enough.

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  3. God bless you, Katherine! I grew up with only one sister, extremely medically complex. Lots of surgeries and doctor's appointments and sometimes my parents were out of town with her for weeks at a time. It was hard and lonely and often felt unfair. But we stuck together and focused on the important things and I think I turned out a much more compassionate and understanding and humble human being than I ever could have been otherwise, because I saw firsthand how we can do nothing without God's grace and that our "job" is just to do what He asks of us in this moment. I'm sure you have grand plans for what you wish to give to your children educationally and otherwise, but trust that you are showing them the little path to sainthood in doing what you most need to do today. They may not understand now, but one day they will. We are so grateful for what you share iwth us and so grateful you have Thomas there with you to love and cherish.

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