This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

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.

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