Wednesday, January 15, 2014

Dear Angry Dad at the Hospital,

I saw you yesterday in the hospital cafeteria play room.  You sat in a booth, hunched over in your mechanics work shirt.  You were tired, ragged, and damn mad.  I saw your kids run around while you waited.  You were frowning and had your face buried in your phone.  I saw you yell at your children when they asked for attention.  All 5 of them.  I saw you scold your littlest one, who must have been 4 years old, for not knowing how to put his shoes on.  You yelled at the other kids who stole away with your Diet Coke.  I saw your teenage daughter's attempted for attention ignored, pushed off.  She shrugged it off and went back to her sisters and brothers.  I could see the weight of the world on your shoulders.  And I get it.

After all, people don't come hang out in the hospital play room for fun.  You're there because one of your children is sick.  This could very well be the worst day of your life, the day your child gets that awful diagnosis or the day chemo starts.  Maybe you had a fight with your wife this morning and this day that is dragging on and on and on has just gotten the best of you.  Surely you have to return to work to finish out your labor intensive day.

The truth is we've all been there.  All of us fellow hospital parents I mean.  We've waited those long waits.  We've succumbed to the temptation to get pissed at the world, pissed at the staff, pissed because we can't take one more day of hospital food.  We've been down and out.  Done.

Our healthy kids have waited too.  They've feasted on the crap they pass off as food in the cafeteria.  We've given into their incessant pleas for goodies and paid for it with the subsequent sugar highs... and lows.  We've watched TV till we saw double and left that same seductive box a little emptier in our souls than when we began.  We've gritted our teeth watching the nurses hurt our kids, for the good of our child of course.  We've waited.  For hours.  And hours.  And the moment we finally leave the room to grab a quick bite to eat, that elusive person for whom we've already waited 8 hours has come and gone.  Impeccable timing.

It's the waiting that's the worst part.  It's the sheer mental and physical exhaustion of just being there, doing nothing, waiting.

I get it.  I understand why you're so dang mad.  I've been mad too.  Just like you, I've wanted to bury my soul into useless things, to sit with my face illuminated by the glow of my phone or the TV.  Actually, I have done this.  And I've felt any residual hope, or life, or happiness sucked right out of me during those difficult low moments.  The truth is, these pointless things will not get us through, they can't fix what's broken.  Being too busy to watch our kids newest amazing acrobatics won't help anyone.  Not us, not them.  These times are one long, brutal fight.  A fight to keep afloat.  A fight to keep the faith.  A fight to not allow your soul to die off little by little. 

What you need dear Angry Dad, is to put your phone down.  To sit, waste time with your kids.  Watch their stupid little rolls and tricks.  Laugh at their silly antics and their game of chase.  Help your kids put their shoes on.  It is not only you who is being crushed by the gravity of the illness your sick child has.  It's your kids too.  And your wife.  And any other family you are lucky enough to have standing with you at this terrible time.  They are all crushed.  Down.  Angry.  And that is why you must stand.  You must be the strength that holds everyone together.  You HAVE to be present, to be the safe place your kids can go.  The person who can affirm the unfortunate reality of the situation while at the same time hugging that worried child and letting her know you're not going anywhere.  And especially your teenager.  If you don't hold her, I guarantee she'll find someone who will.

But know Sir, you are not alone.  All of us fellow hospital parents are silently behind you.  If nothing more, to just give you that familiar look of understanding.  But it is not us that you must rely; it is Him.  I have told you to stand, to be the glue.  But rest assured, it is not you who will be holding everyone together.  You are not strong enough.  You are weak.  And it is in this weakness that you will find Strength.  Allow yourself to be broken down, pleading on your knees, utterly demolished.  It is precisely then that your Strength will come, precisely at the moment you admit you can't do it that you will be rescued.  Your Strength will be Him.  He who carried the weight of the world on his shoulders.  He who sweated blood for you.  It is Him.  You no doubt have been given more than you can handle.  After all, if you are never stretched, how would you ever grow?  So, rely on His divine providence.  His unfailing fidelity.  You take the first step, He'll carry you the rest of the way.  This will not be easy, but just remember, His grace is sufficient.

A fellow hospital parent

P.S.  Please remember these little words of wisdom dear Angry Dad.  You may be the one telling them to me next time.
"The Dream of St. Joseph."  Trust, Angry Dad.  Just Trust.
Saint Joseph, pray for us!

Monday, January 13, 2014

Don't cry over spilled... avocado??

As you can imagine, there are a lot of spills in our house.  Four kids combined with 3 meals and two snacks a day at home, we average a spill a day at least.  These are normally no big deal: a glass of milk here, a cup of ice water there, some soup maybe, Fun Dip (blame my mom, she bought it for them), little water puddles under Dominic's vent tubing.  Nothing note-worthy really.  With the business of homeschooling and preparing (and cleaning) up 3 meals and two snacks every single day of our lives (sigh), you might expect the kids to be the biggest culprits of messes in this family.  Well, dear reader, you guessed wrong.  I will not spill the beans as to my extreme messiness as a whole, but only give you a little insight into life with me.

Imagine if you will, 3 hours of washing, chopping, cooking, blending and jarring baby food.  My mom and I have already gone through a cup of hot coffee and another glass of iced coffee, the chatter is slowing, we're ready to be done.  And then, SMASH!  A box my mom was carrying had it's bottom fall out and the result was a big ol' fat hot mess.  There was glass mingled with Dominic's breakfast blend: avocado, oatmeal, butter, egg yolks, apples, and bananas everywhere.  On the floor, up the cabinets, on the back of our pants, in my Birkenstocks, across the kitchen floor under the dining table, on my shirt.  We stood still, silent in complete disbelief.  Should we be upset that all that work was now scattered across the floor?  Should we be mad at the dang box that broke?  We looked at each other in this decisive moment and opted to take the path of hilarity.  Loud laughter filled the room mingled with sighs and "oh man's."  My sister, who had been cuddling Dominic in the living room, peeked around the corner and saw our mess.  Lucky for her, she had only enough time to snap a few pictures before having to leave to get her girls from school.  I just stood, staring at the mess- really unsure where to begin cleaning this massive disaster. 

After all the goo covered glass shards were scooped up and the floors mopped, a slippery film remained.  We could have mopped a second or third time, but we preferred the danger of repeating the same accident and getting it all done to having to waste any more time cleaning.    After all, this is the woman from whom I learned it is better to break you leg and carry 27 grocery bags (and a baby on your hip) in at once than to take a second trip.  I am just like her in this way- ferociously, hopelessly stubborn.  Luckily though, we finished the rest of the breakfast and dinner foods without further incident, taking special care to walk flat footed across the slimy parts of the floor as to prevent any further spillage.  The floor remained nasty for 2 more days (lest you think me super-mom or something) until finally last night I scrubbed the remainder of dried breakfast blend from most every surface in my kitchen.  Our main objective after all, upon completion of this labor intensive work that is Dom's food prep, is to collapse on the couch for a few blissful moments of uninterrupted sighing and coffee drinking.  A perfect reward for a job well done. 

Here's to you Dominic- I hope you enjoy the rest of your breakfast food that actually made it into the jars and in the freezer.  You may be a mess, but you're worth it!

In and For Them,

Wednesday, January 8, 2014

Duct Tape and G-Buttons

Wouldn't that be a great name to a TV show?  Hmmm, maybe sometime in the future.  But for now, let me tell you a story.  It involves a sweet little man, his g-button, and the night it almost fell out.  Mike was feeding Dominic his dinner of yummy, thick, green puree when he gasped- which by the way is a big no-no in our house.  In our house a gasp can mean only three things: #1 your or someone else's trach has come out, #2 you or someone else are blue, or #3 some other unimaginable medical emergency is ensuing, usually involving choking or broken bones.  So, naturally, a gasp results in all the adults hearts dropping, adrenaline raising, and one or both of us running ready to resuscitate someone, which may or may not be accompanied by pushing little people in the path out of harms way.  A false gasp then earns you a stern "if you're not dying, don't make that sound!" scold.  Perhaps we need a little R&R to back us away from the edge of the cliff.  But I regress.

As I was saying, Mike gasped, to which sound I immediately attended to what was happening.  He was holding his g-button in and told me it was coming out.  I didn't quite get it (I was still scanning for purple lips and decannulated trach from that gasp).  Again, he told me his button was falling out.  So of course I pulled on it to check, because you know, how could I possibly trust this man I've been married to for 11 years who takes care of all of us :/.  Sure enough, the balloon that holds it in had busted.  Luckily, I had a spare.  But then, uh-oh, I remembered I had opened it to use the special tip syringe to re-inflate a g-button a few months ago.  And since then, it has gone MIA.  This brand new shiny g-button had been made useless by the absence of this magical little special tip syringe that was needed to blow up the balloon that holds it in the tummy.  Dang.

So, like any good red-blooded Texans would, we pulled out the Duct tape.  Ok, it wasn't actually Duct tape, but it does make for a more fantastical story.  It was plain ol' medical tape.  But the fact remains we taped the button to his belly.  The poor baby had tape all over his little fat, roll-y self.  The last thing we needed was for that button to pop out and 200 mls of 'yummy' green goodness to spout out.  The next morning, after a few stressful, careful feedings, I picked up the new g-button and
replaced the broken one.  I sure wish I would have taken a picture of this, but alas, I did not find the humor in it while it was happening.  It's only now I can laugh at the ridiculousness of this crazy life we're in.

Here's to keepin' your buttons in and your face pink ;)

In Them, Chasity