by Bear with me for a minute and let me vent a little? I know Im going to sound whiny and ungrateful for a few minutes at least, and you don’t have to read it, but today I just need a moment.
Today has been trying.
The start of a new year, new insurances, new deductibles, Medicaid and WIC Paperwork, the speciality pharmacy letting us know it’ll be $1300-4000 – PER MONTH, for just ONE of the meds we need that we need refilled, finally finding an assistance program, applying for it, getting conditionally approved for one month with paperwork to follow, praying the drugs get here tomorrow before we run out and don’t have them on Saturday, finding out that we have another drug to jump through hoops for, discovering something went awry with our Medicaid paperwork and we no longer have state insurance coverage and will be responsible for a lot more than we expected, learning we have $10k in ambulance bills from travel to CHOP still, missing insurance checks that were sent to us and returned as unable to forward even though they had the right address that need resupplied so we can pay bills that have now been sent to collections, supplemental insurance claims that need turned in to both last years and now this years insurances, making sure the new hospital, doctor and prescription bills are applied to all (now two instead of three) insurances before we get a bill, making sure we’ve actually filled all those prescriptions and aren’t missing anything else and making sure we aren’t about to runout, needing to set up all of our followup appointments and make it fit on the calendar and preferably same days so we only drive up once, and making sure it fits within our nursing schedules, and our home therapist visits, trying to get an update on our cross country travel needed to prepare for his next set of surgeries, losing night nursing coverage unexpectedly and subsequently not getting any good sleep…
*deep breath*
Oh, and (semi) normal people problems like figuring out how to get the 7 year old to and from all of her activities, convincing her to take her meds/vitamins, do her homework, put her laundry away and bathe, stress at work, trying to find paperwork for taxes, trying to find time (and money) to update our budget and pay the bills, needing to get the car in for a (thankfully covered by warranty) repair, figuring out why the internet isn’t working (did we pay the bill? I really need to get that budget going!), cleaning and putting the basement back together after the sewer backup, stressing about the arrival of the bill for the new furnace after the old one died, doing the dishes and laundry, needing to take a bath and shave my legs, and probably should manage to make dinner and eat somewhere in there too (a root beer float in the tub counts right?)
You thought I was done, didn’t you? To be honest, I’d be surprised if anyone was still reading… but I need this rant, even if nobody else reads it.
Honestly? This is the stuff that I wish I knew about before coming home more than anything. You read stories and look at pictures and understand hospital life and procedures and anatomy in Facebook support groups.
But I didn’t expect that the hardest part of my day to day life wouldn’t be wouldn’t be learning to take care of my medically fragile kid. The hardest part isn’t the memories of the days in the hospital and the daily worry and stress over his wellbeing. Those things you can hand over to God and at least to some degree, let go of.
The hardest part, at least in January anyway, and for me…. is the mountain of administrative paperwork, budgeting ridiculous expenses, tasks and red tape.
For my friends who have medical kids and have been doing this for years without snapping? I absolutely admire you. You’re amazing. This crap is exhausting. And draining. I don’t know how you do it. Last year we didn’t have quite so much on our plate – my insurance company didn’t change and we had never been discharged home. Medicaid was JUST approved before the start of the new year and we hadn’t dealt with A lot of the outpatient things… this year? I want to bury my head in the sand and cry!
Thank Aaron is here to help carry this weight. I have some single parent friends that do this and work full time too. How? I have absolutely no idea how you manage. I hate it when people call me a “super mom” or anything like that, I see it as just “doing what’s needed”, but hypocritically? I admire everyone else for it so much!
Anyway…
Working my way out of a rant now…
After getting off a particularly distressing phone call this afternoon with one of our account managers, I came upstairs to take a break and blow off steam, maybe go outside for a walk in the cold…
And at the top of the stairs I was greeted by this.
This 16+ month old little miracle.
Who by most peoples estimates shouldn’t be here today.
Rolling around on the floor, not a care in the world, smiling, waving at me, laughing and not least of all…. wearing a bucket on his head.
Needless to say? I got down on the floor and played for a little while. And it did so much more for my head and heart than that walk would have.
As exhausting as all of this is?
It’s absolutely worth it.
Every smile. Every headbutting request to bounce him up and down. Every unclamped gtube that spills food all over everyone and everything. Every time we have to stop and untangle all of his tubes and cords. Every sloppy wet kiss. Every night and mornings trach cares/changes. Bath time splashes that drown the floor. Toys to the nose causing nosebleeds. Family dinners in shifts. Sleepy cuddles. Shots. Meds. Sleepless nights. Hours and hours of worrying and praying. Learning life saving skills that no parent should ever have to actually use and ultimately using them. And all that other financial and administrative garbage up above. Totally and completely worth it to have this little guy here today, smiling at me, rolling around on the floor… with a bucket on his head.
Tomorrow’s a new day, and we will start all over again. I’ll say my prayers for patience and understanding tonight. and hopefully we will make it through the start of the year (mostly) unscathed.
Assuming I ever get out of my nice warm bubble bath and finish this root beer float anyway. Jury’s still out on the leg shaving though.
