A Day in the Life of . . . Part 2

We just arrived home from the hospital.  A friend took Noah to soccer today and I’m waiting for Micah to be picked up for fencing.  I thought I would give you a view of a normal day for me.  Perhaps I’ll do one tomorrow for the boys.

Each day I start around 6:30am, even on weekend days.  As long as Laura is home, she has to go to the hospital every single day.  It’s usually in the morning as well so I need to get up early to prep for the day.  During school days, I supervise the boys and sometimes fix them breakfast.  I make sure they have folders and planners signed and that they remember any special issues of the day.  Micah needs an extra boot to get out of bed so he takes a little more work in the morning.

I usually check on Laura between 7-8am.  Each morning brings a different feeling and mood so I check on her to see what she needs.  Sometimes she’s doing fairly well and gets up on her own.  Some mornings she is not doing so well and needs some time to cry and be encouraged before starting the day.  I’ll run downstairs a couple of times and get some drink or food for her on those days.

After dropping the boys off at school, I run back home on days I watch Laura.  We get ready to go to the hospital, usually between 9-10am.  As Laura mentioned she may be at the hospital anywhere from 1-6 hours.  Once I find out how long of a day it is, I schedule what needs to happen with the boys and myself.  On days I’m with Laura I usually stay the whole time with her, running to get lunch for her and attending to whatever else needs to be done.  When someone else watches Laura during the day, I go to work.  Sometimes I have to adjust my days because the person who’s scheduled to watch Laura gets sick or has some other glitch.  I had that happen two times this past week.

I try to fit most of my work in between 10am-3pm during the weekdays.  After 3pm I either pick up the boys from school or arrive at home while someone else brings them home.  From 3-5pm I check in with the boys about homework, talk about their days and attend to Laura once again.  Around 4:30pm on days where meals are not brought, I start to cook dinner.  I cook different meals for the boys and myself, and Laura.  She can’t usually eat the same as us when she has things like a really sore throat right now.

After dinner, I do any of the following: go back to work (used to be both Tuesday and Wednesday nights but now is only Wednesday), or do household chores (laundry alone usually takes 3 days), do finances, spend time with the boys, spend time with Laura, set up schedules for the next day (arranging doctors’ appointments for the boys, arranging house and car repairs, catching up with my family (my father has his own challenges caring for my mom who has Lewy-Body disease) and friends, as well as any other tasks.  On Monday nights I take Noah to soccer practice and I pick up Micah from fencing sometimes on Thursday nights.

Weekends are usually busy with Noah have soccer games on both Saturdays and Sundays.  Micah has fencing on Saturdays.  If I can’t go to the boys’ activities, I need to get someone else to take them.  If I can go, I need to find someone to watch Laura.  Laura can never be left alone as long as she is home.  Whoever watches her needs to watch for the following possibly developing in her as a result of the bone marrow transplant:  temperature greater than 101 degrees, shaking chills, severe shortness of breath, chest pain, loss of consciousness or fainting, seizures, severe and sudden headache, sudden confusion, inability to speak, severe weakness and loss of feeling, excessive bleeding, inability to wake up or any other life threatening symptoms.  Less severe symptoms include diarrhea, mouth and throat sores (which she has severe throat sores right now), skin rashes, normal weakness, normal headache, and stomach upset.

It’s a challenge each day to figure out how much to stay present with Laura and not be hovering but yet not also be too distant.  It’s challenging to figure out the balance.  The challenges also come when the boys have bad days and making sure I attend to their feelings and needs but not neglect Laura but also not neglect them in caring for Laura.  Sometimes we all get neglected and we may feel some bruising from that.

What’s amazing is that friends have helped out with cleaning the house, providing transportation for the boys’ activities, watching the boys when I can’t, running other errands and I still find my schedule full.  By the time I reach 10pm I’m usually so exhausted I can’t think.  God has been very kind to me providing ample support and encouragement.  I’ve been grateful that since Laura was diagnosed with leukemia on November 13, I haven’t contracted a cold or the flu.  This is still possible with the weather yo-yoing but so far I’ve been well and I’ve been very grateful for this.  Even when cleaning up vomit and giving out medicine for colds and flu, I haven’t become sick.  So thank you to anyone praying for health for me.  It’s been great this winter for me personally health-wise.  Whenever any of us is sick in the house, we are not allowed to be in the same room with Laura.  That’s one of the pains we’ve experienced with leukemia is that it is very isolating.  Physical touch is diminished if not eliminated at times and physical distance in our own home is kept so that’s part of the emotional weight we feel going through all of this.

Well I better stop writing this novel and give you a chance to breathe.  I’ll put something in the blog tomorrow about the boys.  Laura is still home.  She was at the hospital 3 hours today getting potassium.  She is very tired and her throat is bothering her tremendously.  Right now she’s on a diet of milk shakes, jello, cold liquids and anything else that’s not warm and hard to swallow.  We’re hoping she gets some relief soon and can whether this pain.  Thanks so much for your faithful prayers and support.

Love,

Brad