Problems, problems, how you gonna solve ’em?

Sometimes you just gotta write through the fog of despair to find clarity.

That’s what I did Saturday, starting at 5:30 a.m., before my kids were up, so I could let go of a crummy week and have a fun Halloween with the family.

I discovered that when you put it out there, solutions float your way. Some come in the form of an epiphany. Some come from the wisdom of pals who know what’s what.

Problem 1: My son decided he doesn’t want to do any physio for cystic fibrosis, and instead prefers flipping chairs, thrashin’ sis and popping mom in the nose in protest

Solution: Epiphany= visit Amazon.com and order youth punching bag w/ 2-day shipping (we can’t take it any more)

This punching bag as as substitute for the rest of us.
This punching bag as as substitute for the rest of us.

Problem 2: Getting Eli’s treatments in before and after work and an extra session for crud cough battle

Solution 2: Friend idea=Let someone else do it!

After I lamented all my woeful woes, a CF mom (Hi, Becky!) texted me. Our kids go to the same day care, which caters to children with special needs. Crazy thing about CF – our children can’t get within six feet of each other due to infection concerns. They aren’t in the same class and don’t threaten to infect others – but CFers lungs like certain types of bacteria and can spread that bacteria to each other. This day care is so on it they basically follow our children around with Lysol any time the other is in a common space. Anyhow, other CF mom e-mailed me to remind me that our day care handles this type of special need – like vest sessions and breathing treatments.

This solution was so right there and so right on and we’d tried it once before, then gave up. Why? Mark brought Eli’s vest to school once and Eli stared at it in silence as tears streamed down his face. Pops never had the heart to haul the equipment to school after that. I guess we were both resigned to being the party responsible for pissing off our toddler with his treatments.

Becky reminded me that the school is there to help, as a partner for parents who need partners in care. YES.

Eli needs three sessions on a shaking vest a day to shake up his lungs so he can circulate and/ or cough out the thick sticky mucus his body makes. He needs good sleep because he’s a growing boy whose body is always fighting invisible battles. And we need to get out the door on time and sans exploding heads.

So off to daycare pops and the vest go again! It packs up in a bag the size of an XL carry-on, but it has rollers.

This was all a good reminder: We can’t get through this crazy game called life alone.

We need punching bags, friends and a helping hand!

xo

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Bruiser and me

daily-life

Thirty pounds of rage can flip chairs, shatter sound sound barriers and thrash at your heart, one so full of love for this little bruiser.

Seems at nearly 3 Eli has decided he has a lot to say about the hours of treatments and physical therapy we put him through each week to keep him healthy.

He can say quite a few words but prefers a gutteral, blood-curdling battle cry when he wants to get his point across. He curls his fists, plants his feet in place and opens his mouth. Piercing anger flashes behind those pale blue eyes.

His preferred punctuation marks for these expressions entailed a wild swinging fist that landed on my nose, a wooden puzzle flung at my ankle,  two upturned chairs, extra bonus screams for dad and a thrashing attack on sis.

Thirty pounds of anger is strong and loud and completely unnerving.

Because this is a little person who is docile and cuddly morning and night and whose face radiates not with anger but with joy and innocent mischief and curiousity in the time in between these outbursts.

Eli has CF and for the last month and a half his lungs have taken a good crack at him. It started out of nowhere one night, when my healthy buddy’s body turned on him. Cough-free one day, by the next, his eyes were full of goo and his lungs full of crud and he screamed himself awake tugging at an ear. We put him on amoxicillan the next morning instead of waiting the usual six to 10 days to see if the sickness looked to have stuck. The antibiotic halted the ear tugging and cleared gunky eyes but didn’t touch the cough. We’ve moved to Bactrim, a stronger antibiotic. He’s still coughing and we’re about to start a second 21-day round of it.

The shaking vest he wears for at least an hour a day has become enemy No. 1. I bring it out and he hides, laughing, under the kitchen table, a desk or bench. Then as I retrieve him he squirms and starts to scream and tells me “No, mommy. No!” Thus far in his short life, cuddles, cartoons, gummies, juice, a puzzle together – stuff like this – has been enough to make the physical vest therapy tolerable. His breathing treatments take an additional half hour, and he won’t do them at the same time as his vest.

With extra vest sessions for his cough he spends 14 hours a week strapped to equipment.

Not only that, we had the audacity to put him back in day care after a fun vacation He clings to us and cries each day we drop him off. Might I add he is at a wonderful place that cares for children with special needs. I love the teachers and staff and have total confidence he is engaged and happy when out of sight of his parents. The day care send me updates all day through an app, including pictures of him happily playing with other kids.

But any way, back to day care means waking up early-around 6 a.m.-to do his treatments in the morning.

Wednesday after finishing everything up, buddy mounted an assault on his parents and sister.

It culminated as he hit me in the nose, thrashed sister during bath time, screamed at pops, threw books, papers and toys from a bench and flipped a chair — twice.

What could I do but let his tantrum burn out enough to give him what he claimed he wanted in between blood curdling banchee screams — a bath.

I put him in the bath.

We had a conference.

I explained to my 2 year old that we have to do these things to stay healthy. His body has a disease, cystic fibrosis, so we have to try extra hard and be extra big, and we can’t scream and destroy since it hurts us and it hurts feelings.

“Do you understand, baby?”

“Yeah,” he said sweetly, looking down at the water.

Eli said sorry to me, pops and Laila. We picked up everything he’d attempted to destroy on his rampage.

I told him the story of “Eli fire engine,” which usually entails a family of fire engines rescuing a cat before putting out fires at the playground set by a neighborhood dragon.

Then he went to sleep and I collapsed and cried myself to sleep.

But looking back on a tough weeks there were also good times.

Laila got her first loose tooth. We made cut-out bats for a Halloween party. I sent (super late) birthday gifts to my newest nephew, but picking them out was a delight.

We thought through our routine and made changes to make it better and make Eli’s health better.

For one, I’ve asked for and received an order for a new breathing treatment. Hypertonic saline starts next week. It’s another two treatments a day, and yes, that’s a pain, but the point is getting  him to breath vaporized salt water so he coughs up this crap that ails him and beats this stupid cough.

Before I put him through that I’m getting him a faster nebulizer. A nebulizer is an air compressor that pushes air through a tube and into a contraption that vaporizes his medicine. We need a Cadillac. We have what feels like a 1999 Ford Focus and it’s pissing buddy off.

We are going to try to strap him to his vest while he’s asleep. I get up at 4:45 a.m. any way. Wish me luck.

Dunno, this kind of stuff also gets me thinking about our lives.

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I wonder why my son has to suffer, and if somehow there is a deeper meaning.

I’m not religious. I’m not the type who can quote scripture and feel better, or feel anything at all. . I’m not an atheist either. I pray. I send thoughts up to my mom, who died five years ago. I’m somewhere in the middle and I don’t really give it a label.

If nothing else, though, our horrible CF care week served to remind me about the importance of being kind and appreciating anything good, even something that is tiny and good.

I re-sest kind my default across the board. I focused hard on every happy moment that came our way.

Being a caregiver is hard, but I’m not the only type of caregiver. People are dealing with all manner of problems – addicted relatives, aging parents, sick children, deep disappointments they keep to themselves, all types of stuff.

After I dropped my daughter off one really hard morning, this is the stuff that was going through my head. You don’t know what someone has just come out of, so be nice. Let’s give each other a break.

Eli’s care brought other challenges — like, Mark and I, we need to be kind to each other. And in the mornings, we just weren’t, like, four  out of the last five days. The stress of getting a wailing, angry toddler through physical therapy before breakfast and again before bed nearly did us in. Both of us need to work on the following pattern:  Ignore bad behavior. Forgive bad behavior. Apologize for own bad behavior. Repeat. This person I married and love can send me from 0 to head explosion with a look. This person I married and love is the only person who sees me at my most vulnerable, there to hug me while I cry because our son is sick, because the care we give him to keep him well is akin to torture in his toddler world, and he understands why I’m crying like no one else on this planet can. In the madness of this week we somehow managed an escape. We hired a sitter and got out for a night of beatnik-style speakers and drinks and mingling, like wow, man. Snap snap. This is the kind of stuff we did together in Chicago, before we had kids, before life took us through fast moves across multiple states and financial hell and the loss of my mother and the birth of my daughter and then my son, who has this illness that needs to be cured, all within five years of saying “I do.” And here we are, still together and still able to have a laugh and a drink.

The other part of being kind is being kind to yourself. We both chose rest over domestic duty. Our days are exhausting and we have no family here to help. As a result we’ll be digging out from under the laundry all weekend. And that’s OK.

We’re all gonna be OK.

Buddy shows his scar and fist pump.
Buddy shows his scar and fist pump.

Feeling better

Quick note: Eli’s 0-to-crud-in-60-second cough has improved a lot.

Daily, he is on 1.5 hours of vest, an antibiotic and breathing treatments of Albuterol plus our new treatment, Pulmozyme for a cruddy cough that appeared out of nowhere. He doesn’t have a consistent cough any more, but he coughs during his treatments. That’s good because it means his lung juices are flowing, expelling troublesome gunk.

Little man turns off his compressor and says “All done!” before he’s done. He’s just about had it with all this stuff.

When we turn it back on, he says, “Don’t do that!”

It breaks mommy’s heart a little.

It makes me smile, too, though, my little buddy using words to exert a little control over his tot life.

“Don’t do that!”

He says it with such determination and confidence. Nice work, buddy!
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0 to crud in 60 seconds

I put a note on my Facebook page for Eli that buddy improved and was no longer coughing.

Shouldn’t have done that.

Continue reading 0 to crud in 60 seconds

17 ideas to minimize holiday stress and weight gain, and maximize health & happiness for the #healthy65 Holiday Challenge home stretch

We’re entering the #healthy65 Holiday Challenge home stretch.

Parties, visits, dinners, travels — oi. It’s time to double down on our wellness goals through Jan. 13.

The #healthy65 challenge began Nov. 10 with the simple idea to do one healthy thing of your choosing per day for 65 days. The healthy thing can be physical, mental, emotional, spiritual, whatever. My only suggestion is that goals are simple, not extreme.

It’s Day 34/65, Week 5/10.

My co-workers and pals and even a few interested community members have joined me on my trek to have a holiday season that minimizes (for me) stress and weight gain!

Below is a sampling of their many smart ideas, which I will re-read for inspiration and motivation. What are you doing to stay healthy and well this holiday season?

1. This Oklahoma City personal trainer has hopped on board the #healthy65 Holiday Challenge. 12 Days of Christmas? How about 12 Days of Fitness instead. Check out his ideas on his blog. Day 1: Walk 1 mile.

2. A great friend has been a most loyal #healthy65 subject, Tweeting his efforts almost daily. Ryan emphasizes the utility of good ‘ol fashioned games in fitness. Like this:

3. 80/20 – I think I stole this idea from the aforementioned trainer’s blog. Who wants to be good all the time? Aim for most of the time with food and fitness.

Pie. mmmm. Pie.

4. Speaking of @briokc, here’s another idea from her: Get straight and meditate like a Buddhist.

5. Pat’s trying to lighten up. We could all probably lighten up.

6. How about cutting back on sugar? Jenni’s doing one sugar-free day per week. She’s stuck with it, too!

7. Travel can seriously bust your diet goals. Kathryn’s 3 strategies have helped keep me on track during holiday-time travel.

8. Jenn is cooking with whole foods only for the duration of the challenge. I gotta get some of her recipes…

9. My co-worker Berry is all about sit-ups on account of his fascination with athlete Herschel Walker’s alleged 1,000 sit-ups/per day routine. Berry’s up to 100 these days. Not bad, Berry. Not bad at all.

10. Positive thought: A little progress in the right direction is still progress! I’ve been tracking with My Fitness Pal in recent weeks. This is because I’d like to lose about 20 pounds of lingering baby weight. My weight loss progress is slow, but according to MFP, I weight 6 fewer pounds than I did at this time last year. I’m calling that a win.

11. Set Christmas spending limits. We are operating on a budget to keep Christmas reasonable. My children don’t need 1,000 new pieces of plastic crap. They’re getting three gifts a piece from us, and Mark and I aren’t buying for each other. Having a financial plan on our razor thin budget gives major peace of mind.

12. Steal a good wellness idea from another culture. My stolen idea is Danish. It’s called ‘hygge’ and it’s cited as one of the reasons the Danes are the happiest people on the planet, despite utter crap weather. Read about it!

13. Appreciate something. This woman appreciated her Monday morning iced coffee. Taking the moment to appreciate small things may seem of little use, but if you do this, you will be happier, according to wellness experts. Save the bitters for the beer. Mmm beer.

14. Veggies. Get into it. Tiffany proves that even in the land of cattle, it’s possible to be a vegan.

15. It’s a great time of year to start thinking about spring athletic events and formulating a fitness plan — a 5K, 10K, half marathon, mini-triathlon, Tough Mudder, etc. Jaclyn explains her love of Tough Mudder. It’s all about teamwork, ppl.

If not into fitness, you could always brainstorm about ways to give back. Giving is good for the soul. Here’s a worthy cause – Christmas gifts for the 11,500 Oklahoma children who will spend Christmas in foster care. If local, you can volunteer your time.

16. Try a new exercise! I’ve picked up my YMCA attendance with this challenge. I’ve fallen for Piloxing. Zumba? Not a fan. I was afraid of lifting weights until I went to my first Body Pump class. I discovered an amazing series of weekly classes that incorporate cardio and weights. Key to a great class is good instruction and good music. I leave class feeling great, as my friend Khina put it – like She-Ra.

17. Resistance is not futile! My friend Jen resisted the sweets tray at a conference. It may seem like a small choice, saving, I don’t know, 100-300 calories. But even having one 150 calorie treat (a glass of wine or a cookie, for example) every day for 30 days in a row can add a pound a month!

Ooooklahoma
Ooooklahoma

Today is day 34 of the #Healthy65 Holiday Challenge, created by hithisiseli.com and supported by NewsOK and The Oklahoman! Nov. 10- Jan. 13, do one healthy thing per day of your choosing. The “healthy thing” can be anything related to wellness – mental or physical. To share your healthy thing, use the hashtag #healthy65 on Twitter or Instagram, or post your efforts and success stories on http://www.facebook.com/newsok. You are also free to do the #Healthy65 in secrecy, semi-secrecy or dressed as a ninja. The challenge has infiltrated the newsroom. Follow NewOK reporters as they ditch sugar, exercise, eat whole foods only, and take on personal wellness challenges of all sorts. Our participants have been encouraged to keep it simple and keep it up! How will you challenge yourself? Jump in at any time, just adjust your end date. Let us know what you’re up to, and Godspeed.

Do you have a great idea or goal you’d like to share? Leave a comment below or send me a note!

Eli breaks the scale

Yesterday I found out that my little buddy is actually more like a big buddy.

big buddy in the elevator
big buddy in the elevator

Continue reading Eli breaks the scale

Auntie Carrie’s corner: 6 healthy, tasty, robust recipes for toddlers with cystic fibrosis

Aunt Carrie just stepped up her game.

Aunt Carrie, stepping up her auntie game. Fierce.
Aunt Carrie, stepping up her auntie game. Fierce.

Continue reading Auntie Carrie’s corner: 6 healthy, tasty, robust recipes for toddlers with cystic fibrosis

A beautiful life

A friend of mine sent me a link to a blogger’s website. I was clicking around, admiring her peaceful and humorous style, when I found a tribute to her brother. Andy had CF. He died in 2002 at 25, almost 26. Her video tribute to him is beautiful; I dare you not to shed a tear. It made me want to slow down a little, too, amid all my tasks and projects. Aren’t we all just here on borrowed time?

http://simplyblake.wordpress.com/2013/04/22/soldiering-on/

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3 messages from Eli

The strangest thing happened today. Eli’s just 8 months old, yet he’s started to meme. Does your baby meme? Oh. Uh, well, every child develops differently, so don’t feel bad or anything.

Here are 3 things Eli relayed:

1.
why u buggin

2.
Tell me again

3.
You funny