This week I had the chance to talk to somebody who told me their own family's health battle story. It certainly seemed worse than ours - it involved a child, a long distance, 9 months of rehab. It made me feel terribly lucky in comparison.

But the end of the conversation went like this:

Her - "You have so much on your plate right now. I don't understand how you make this look easy. Like how do you keep showing up here with a great attitude and just keep going and volunteering to do things?"

Me - "Well, it's a bit of a coping mechanism, but truthfully, if I can't be with Rico, I want to be with our kids.  And what's going to happen is going to happen regardless of how I feel about it, so I might as well just focus on the good stuff."

Her - "Yeah, but . . . but, it's still HARD. It's still really hard. It's not easy."

Me - "No," I admitted. "No, it's not easy."

I hope I have not made this look easy. In our attempt to keep people informed and keep our lives as positive as possible, and our kids lives as "normal" as they can be, I hope I have not diminished any one else's experience by making this seem easy.

Life is hard. I've cried four times this week - at least. One of them in the grocery store, twice where my six year old felt compelled to comfort me.

Last time was at the pharmacy where they apparently need to see your actual insurance card, a hand written prescription, two forms of ID, and make a call to both the FBI and DEA in order for me to pick up a prescription for someone who clearly is incapable of driving if he's taking what they're dishing out. I think my exact words were, "Hey, sorry I don't have government issued clearance here, and yes, I do realize that my current state may lead you to believe that I, myself am overindulging in Oxycodone, Heparin shots, and fistfulls of Gabapentin - but I assure you, the only reason I look this way is because I'm currently caring for someone who's on a steady diet of afforementioned drugs. Furthermore, as is clearly evidenced by my mom van, the goldfish crumbs covering my every article of clothing and the stack of American Girl library books I am on my way to return -  I do NOT have anywhere near the street credentials to pull off selling this $#!= for a profit.  I would not even  know where to begin, and quite frankly my husband's sleep is more precious to me than Beyonce's dream house, so can we dispense with the formalities and just give me the freaking drugs?!!!"

I might have said that. Or I might have just breathed really heavily and mumbled "thanks"  - I don't really remember. I don't want to remember - because sometimes just doing the bare minimum is hard.

Sometimes scheduling a doctor appointment for anyone else in the family is hard. I had to reschedule Yoda's appointment that we waited two months for, because it's when Rico's surgeon was free. Then I had to reschedule again, so we could work around some other Mayo things. Once we finally got our appointment set up, we were informed she'd need weekly appointments for the near future - at a clinic that is 70 minutes north of our house.

Being the only driver is hard. Technically Punk can drive, but with the greasy snow we've been getting lately, it's not our best option, and he's often at rehearsal and can't get to where we need him to be anyway.

Eating is hard. Feeding people is hard. Rico is basically on bed rest. So it is my job to get all of the groceries, plan meals, make sure kids get home to eat meals, and then get myself and whichever kids need to go with me to work. It was one thing doing it in June, when there was no school, no homework, nobody needing rides - but now, it feels impossible.

Sleeping is hard. Somebody is always waking up in the middle of the night - needing medicine, or to change sleeping positions, (or a paper proofread or needing to go outside to pee - which is usually the dog, but I can't be certain, I might have put Punk out once or twice). Count the 90 minutes it takes me to fall asleep each night, and nighttime becomes just gasoline soaked rags of anxiety. The alarm goes off at 6am. Not sleeping is hard too.

Going to church is hard. It's a place where things should feel peaceful, and we should be able to breathe, but by Sunday I am so exhausted I can barely get out of bed. Even if Rico could get to the car - he couldn't get into it, or into the church for that matter. There are also confirmation evenings, graduating senior projects to be done - all things we want to do, but right now, they're hard. Rico was supposed to write something for Punk for church - it took five days just for him to be able to sit at the table long enough to write for 15 minutes.

School is hard. All of it. Like it shouldn't be so difficult to read ten minutes a day with Tiny, or do a simple math sheet each night. But this week she is student of the week. This means, filling out an 8 page booklet about herself, creating a tagboard poster of her baby photos, and writing in the student of the week journal. Yeah, we're not even getting the ten minutes of reading done, because by the time I pick her up, I'm off to the studio. Good thing she's a solid reader. I threw a bunch of old pictures on the table and a glue stick, hoping the poster holds up. We should also be applying for college scholarships, but we can't. It cannot be done right now. Life is not allowing for that. I'm sorry Punk. I will regret it, I know, but it's just too hard.

Being the mom is hard. Being the one people need to check bedsores, and do tuck-ins, and make lunches, and fill out permission slips, and remember it's garbage night is hard. It's hard to get the flu and know it doesn't matter if you're barfing, kid can't drive herself to school. Navigating around walkers, braces, crutches and other paraphernalia is a little tricky. Picking up tipped over medicine bottles so the dog doesn't OD on those teeny tiny Lyrica pills - that's sometimes hard too.

Watching the love of your life suffer is hard. Seeing him move three steps backward is crushing. Knowing he didn't take his pain meds on time, and watching him cringe his way through dinner is hard. Having to put a giant pillow down the middle of the bed, because I automatically snuggle up to him every night and I don't want to rip his stitches or kick his femur when I sleep is rather disappointing.

Thinking about our "missing year" is hard. It's been about a year since Rico was diagnosed. A year and a half since he's been sick. The world is a good place, but we have missed a lot. We've missed roadtrips, birthday parties, holidays, outings, but mostly we've missed being truly present. I really want to savor Punk's last few months of high school, I want to help Kooka rehearse for her first high school show, I want to hear every detail about art class and recess, and what Tiny sang in music class. But it doesn't happen. Not right now.

So . . . yes, yes it is hard. And I'm sorry if this post sounds more whiny and complain-y than usual. But I did want to be honest. We do try to make the best of it - we really do. But it is also hard. We just believe it'll keep getting better.


Juliette/Paul said…
Oh Jana! My heart hurts for you right now. Thanks for sharing so openly. Praying for you today.
Naomi said…
Your honesty and determination that life, the world, and people are good, never cease to amaze me. Even when the journey is hard, you are amazing.
Melanie said…
"...gasoline soaked rags of anxiety"...

Thinking about you always, and taking deep breaths. Keep working toward the light at the end of the tunnel. It's coming.

Treats said…
Thinking about you and sending love. xo
Corkscrewed said…
You're strength through all this is inspiring. Thank you for the awesome care you give to my old friend.