Bedtime takes up so much of our lives, I don’t know why I haven’t written about it before. Most likely it’s because I collapse into a heap afterward.
Below are the three books 3-year-old Eli picked out to read tonight before holding me hostage for an additional 40+ minutes of spoken stories and songs. ‘Tis I who created the bedtime black hole nicknamed ‘Time poverty-P90X’ by scientists and Melinda Gates by being a sucker to my son’s nighttime wims. Sometimes, I kinda love it. Other times, not.
Eli, buddy, have you ever heard of me time? Mommy needs her me time *weeps*.
Without further ado, the books:
‘who i am!’
I’m not even tryin’ to be all cystic fibrosis awareness-y with this first pick. A few nights ago, Eli pulled it off the book shelf and he has asked for it all week. ‘Who I am!’ is a book given to us by Eli’s
cystic fibrosis clinic. It’s about a girl named Patti with cystic fibrosis who reads a report to her class about what her life is like.
We don’t hide the fact Eli has a disease from him, from his sister, or anyone who inquires. That’s why I like the book. It’s like, ‘Hey, this is part of me. I have to do some extra stuff to keep well. NBD. Life is still good.’
Also, the dad in the book is introduced with party in the back, business up front, PLUS a bonus ‘stache.
‘the dark,’ by lemony snicket
I’m so happy Eli picked this book tonight. So many childrens’ books are … just.. not … tolerable. I love everything about ‘The Dark.’ The dark in ‘The Dark,’ is an actual thing that reaches out to a cute kid named Lazlo to soothe his fears. It turns out the dark isn’t so bad after all. I’m into the words and the pictures, which Eli tried to add to with a crayon.
My son is more afraid of the wind than the dark. Gusts rattle the windows and creak the house and leave him screaming at 3 a.m. and I end up sleeping on his floor. Thanks, Oklahoma spring, for ruining my life. Maybe I’ll write a follow-up to ‘The Dark’ called ‘The Wind.’
And check out this speech by the dark. It’s gets creepy and then it gets logical. It’s my kind of dark. If you know anything about my daughter Laila, 5, it is also her kind of dark. She also loves this book.
‘Wheels on the go’
Eli is asleep right now with a fire truck in his bed, so as you may imagine, he loves his books about trucks. The kid is obsessed with trucks! I kid you not, he can ID trucks in the NASA landing convoy. Natch, he loves a book called ‘Wheels on the go!’ It’s a short board book with cut-out wheels that make turning pages easy for little people. I like the illustrations, too. I think we got it from grandma. Good one, grandma!
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)
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!
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.
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.
The news at Eli’s latest CF clinic appointment that studies have shown Eli’s lung function will likely start to differentiate from that of his non-cystic fibrosis friends at 2 got me kinda down, then it got me thinking.
Exercise starts now, lil buddy! Coach Mommy’s on the case.
Today marked Eli’s appointment at the cystic fibrosis clinic. He sees his pulmonologist every three months.
Eli has developed strong opinions on just about everything. He says just a few words these days, but I’ll let the pictures show what one little boy had to say about his experience at the doctor’s office:
Last week I gave Laila a back-to-school budget of $150 and vowed not to exceed it.
That’s harder than it sounds. Shiny, pretty back-to-school things are everywhere. A few increments of $20 or $30 and you’ve blown the budget on stuff that’s probably not going to fit in six months to a year.
I realized right away I’d have to think and buy differently this go-round with my daughter’s wardrobe upgrade.
Here’s what I forced myself to do to stay on track.
My week of writing about Eli and different games and therapies – physio! – to keep his lungs healthy has come to a close.
While I didn’t get to write as many posts on this topic as I would have liked, I got lots different ideas from dipping into this area. I look forward to trying them out and writing them out.
A big part of Eli’s therapy is the chest physical therapy we do each day with the help of a machine called The Vest. This isn’t exactly ‘exercise’ exercise, but it’s a daily practice for good lung health that we never skip. We rattle up his chest to get the mucus in his lungs to circulate. He doesn’t cough yet regularly, except when he’s sick. As he grows we’ve been cranking up his machine. That thing pounds on him. Sometimes I hold him against my chest and do stunningly accurate impressions of Darth Vader.
Some poo poo The Vest as less effective than actual physical beatings on the chest and back designed to drain the lungs. I’m not sure which is better. I tend to hit poor buddy on the back and chest after his vest when he’s sick. I’ll do as much as he can take without starting to holler and kick. It does get things moving. I can’t imagine him taking it as well as the baby pictured in the handout below. That toddler has a pleasant smile on his face and appears to by lying totally still as his parents beat on his chest in a variety of positions. (PAHAHAHAHAHAHAHAHAHA, that would never happen to us). If we didn’t have The Vest, we would do the below for an hour a day with Eli. I don’t imagine it being a pretty scene.
In other news, Laila helped me feed Eli this morning. We are done with formula after this. Whole milk for you, kid!
Next, Laila started cuddling with little buddy. As evident in the below photo, Laila is not a child who smiles every time she’s happy. She’s not a sullen little girl either. She’s my precocious shorty, a thoughtful soul whose current interests run the gamut of superheroes, wolves, vampires, bugs, princesses, forts, pirates and flowers. She collects rocks in her purse on every nature walk and performs dramatic skits for strangers at restaurants. She likes to announce ‘That’s my brudda, Eli,’ to those who don’t know.
Today, while feeding him, she announced, “I’m never going to hit him again.”
For a bit of physio and a bit of fun, we took the kids to a park to run ’em today. Mark taught Eli to howl like a wolf.
On the way back from the park, we passed a Waffle House. I haven’t eaten at a Waffle House since 2007. I remember it distinctly because I was on the way back from a Tennessee music festival called Bonnaroo. That now seems like two lifetimes ago. I’m not the music fest type. I’m the type when, some drug-addled teen throws up and passes out on your tent, I go to alert the festival volunteers. The festival volunteers do not share my concern that the psychedelic youth is about to swallow his tongue. They have no idea where the medical tent is. They say things like, “It’s all part of the experience, man.” And then I take it upon myself to get help, guided by the dread-locked, the body-painted, the patchouli scented, the acid-tripping naked girls in the mushroom fountain. It takes an hour, but we find the medical staff. And then I find my way back to my tent, too tired to attend the next show at 7 p.m. A buzz kill like me has no place at any music festival. Point being: on the way back we went to Waffle House. The smothered hash browns hit the spot.
I had a point – right. Point: We drove by Waffle House today, and, much like in 2007, veered off the highway for mid-day waffles and hash browns.
Despite Laila’s earlier vow that “I’ll never hit Eli again,” she bopped brudda on the head with the blunt end of a spoon and fork, sparking a Waffle House time out.
That was that, and then to my horror, I found out Waffle House has begun including calorie counts on all food.
The plate called “One egg” had something like 440 calories.
“What do they do to their eggs, inject them with lard?” I remarked to Mark.
I got a kids meal. Burger and hash browns – what a combo! Four dollars, one of the lowest calorie items on the menu at 500, and the waitress didn’t even look at me funny. Laila and Eli got waffles n meat. Mark got a burger.
We @#$#^#$^ love Waffle House.
For the third week of May, I’d like to write more about what I learned at the CF Volunteer Leadership Conference I attended in the D.C. area in April.
Thanks for reading. Have a pleasant Sunday!
Here is Laila being sweet to buddy boy as she feeds him. I got video evidence. They are so sweet to each other, except when they’re not. Sibs.