This is Eli

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

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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