Parker’s day starts with unhooking him from the night’s feeds, vent, and monitors. He gets suctioned, diaper changed then lifted up and out of his bed.
A soft knock on the front door comes at 7:30 a.m. and we welcome Miss Angie for Parker’s first 30 minute work period of the day. I’ve started taking this half an hour for my personal scripture and prayer time.
The nurse arrives at 8:15, just minutes after I see Kensley and Rigel off on their days.
The nurse takes Parker back for shaker vest treatments, nebulizers, meds, trach cleanings, a bath and all the other things required for a Hero’s day to go well.
It’s during this time that I run around like a mad woman, cleaning floors, bathrooms, getting loads of laundry sorted and started, and on really lucky days finding a moment for a shower.
Parker’s first bolus is at about 11:00 a.m. We wait this long because of his morning Prevecid requirements. We create his blenderized diet each day with an eye to the best nutrition possible. Blenderized diets do take time, but it is some of the best spent time of the day.
Next is school. My goal is 3 hours of school a day, broken up as needed, with a trip outside for recess included. Some days a Speech Therapist comes, once a month an occupational therapist, and once a week a physical therapist.
Bolus feedings come every hour to an hour an a half as well as another round of meds at 1:00 and again before bedtime.
The hour after noon also requires another shaker vest treatment, nebulizer treatments and a rest period hooked up to the vent.
While Parker is shaking and nebbing I’m usually prepping for dinner, ironing clothes, cleaning something else that needs cleaning, or running an errand. I spend what seems like a LOT of time organizing Parker’s supplies each month. It’s important that I can find them at a moment’s notice in an emergency.
There is seriously a lot that goes on in Parker’s day.
There is usually an extra hour after 2 p.m. and before 4 on days that there’s no speech therapist that I try to work in an art project or something fun for my Brave Hero. Weather permitting I take him out in his wagon. Weather not permitting finds us downstairs playing. It’s also the time I go and check out what’s been going on that day during the Legislative session. Or I might work on next month’s curriculum. While I wouldn’t change it for anything, the reality is that homeschooling takes a lot of time. The results, however, are so very worth it.
I try to get dinner going early. I do it in stages. I’m working on getting better at making menus and focusing on simple meals with simple clean ups, using real food rather than prepackaged stuff.
From 5-8 p.m. Parker has a bolus every hour. I have to keep to a strict schedule here or else he doesn’t get enough to gain weight. Reed and I take turns making sure the calories make it into Parker..
I use the evenings to prepare for the next days lessons, do MORE laundry, and sometimes blog. I also keep Parker occupied. This is a great time to work on his signing vocabulary, or just snuggle.
Reed does the night shift in regards to meds, nebs, and shakes. We have a night nurse a few times a week. But the other nights Reed sleeps with Parker on a mattress on the floor of Parker’s safe room. We have plans on putting another bed in Parker’s safe room, then Reed and I will take turns sleeping in there with Parker.
In between come the little opportunities to bless others. Helping my parents as my Mom recovers from a knee replacement. Homemade chicken noodle soup for my married kids down with the flu. Simple acts of service for those near to me. It brings me such joy to be able to ‘pay it forward’ for all that I have been given.
Several times in the last 8 years that I’ve worked online at home. It’s been nice, the opportunity to make a bit of extra money. Except it always comes with a catch in the form of less time schooling Parker, or cooking dinners, or simply being able to keep on top of Parker’s health the way I need to.
When another opportunity to work at home came up I was conflicted. The money would be so nice. Maybe this time I could just work faster to get it all done. I could do this, right?
My Mom reminded me of my not so long ago Bells Palsy. She reminded me of the stress trying to ‘do it all’ causes…..and how my body reacts to that kind of stress. She looked me in the eye and (several times) told me to walk away from this offer and turn my heart to taking care of Parker and keeping my promises I’ve made to my Father in Heaven about putting my trust into Him.
And yet I still contemplated accepting that job offer.
The moment I was just about to send the email that would accept the new online job, I felt Someone speaking to my heart, telling me to have faith not to take the job and instead focus on the things that mattered most at this time in my life. And suddenly I just knew. I don’t know how else to explain it. I just knew. Instead of hitting send, I deleted the email and wrote a new one declining the offer.
I’m not good at this faith thing. I’m more of a move over and let me drive kinda girl…in control, writing my own ending.
I’m grown up enough to know that you only find geese that lay golden eggs in fairy tales, and that in real life there is always the need to make do or do without. Still, I know I made the right decision.
Knowing that during this time of my life Parker is so much more important than any employer, regardless of how amazing the opportunity, makes is easier to send the worry away and allow myself to feel a sweet sense of peace.
I’m still not good with the whole faith thing. But little by little I think I just might be making progress.