I Couldn't Do It

Libby had to see her endocrinologist last week, and so I asked her Daddy to take a half-day and come with us.  In the six times we’ve gone to endocrine, Daddy was only unable to come one time.  It was a nightmare I do not care to repeat.  So we got an appointment time that worked for him, and off we went to St. Paul.  We packed the stroller, a bottle of water, a bottle of milk, a couple of her favorite CD’s, a few books, and a couple small toys.  All this for a 15-minute checkup and a blood draw.  But we come prepared because we know our kid in and out.

We know that, as much as loud noise is scary to her, she’s MORE uneasy with quiet that’s not really quiet.  Like the “silent” prayer in church, broken by sniffling noses and clearing throats and bags of cheerios being opened.  Or like a clinic waiting room, with phones ringing and computer keyboards clicking and doors slamming and other waiting patients trying so hard to be “quiet.”  At home we can play music to help her with this.  I’m not kidding, it is CONSTANT in our house.  I’m convinced we’re not doing her any favors by allowing her to listen to music 24/7 and not learn how to deal in a world where that’s not possible.  But I’m also convinced that those blasted kiddie CD’s are the key to my sanity and keep her happy and I’ll just deal with it later when she’s a little older.

So. Moving on.  Back to the clinic waiting room.  We know that we will have an uncomfortable, unhappy girl before we even begin the appointment, unless we plan ahead and bring her stroller and keep her in motion until we are called back.  So I walk in small circles at the reception desk as I check in.  I answer some of the questions over my shoulder.  I push and pull it back and forth with my foot when I’m asked to dig in my wallet for my insurance card.  Dad comes back from the restroom just as I’m wrapping up.  My turn to go.  There is not a chance we’d consider taking her in there with us, at least not before an appointment.  Bathrooms are SCARY noisy.  Especially multi-user bathrooms when Mommy can’t control the number of flushes and hand-washings and jet-engine automated hand-dryings she is exposed to.  So, no.  Before an appointment, public restrooms are a no-go.

I return to the waiting room just as her name is being called.  Next up is height and weight.  Evidently, now that she’s over two years of age, they no longer need her to be undressed for weight.  I pray a silent prayer of thanks.  Height and weight would ALWAYS start things off on the wrong foot because I had to lay her on a table covered in crinkly exam paper to undress her.  The sound.  The texture. Not a fan.  She would scream before we even started.  But today, all I have to do is take off her shoes.  Whew.

The measurements pass rather uneventfully (except that we FINALLY made it to 24 pounds – happy, happy, HAPPY dance!!!!!), but the next step of the nurse reviewing her chart and taking notes in the computer is not so great.  Another thing we are not a fan of: conversation.  Unless she knows that it is directed AT her, she is not a huge fan of people just talking in the same room as her.  Oh, and that stupid computer keyboard clicking and clacking again.  Poor sweet nurse has no clue that by doing her job – talking and typing simultaneously – she is leading her patient to the edge of a major meltdown.

We see the signs coming.  She begins to moan, louder and louder.  She’s on her feet standing against a chair, and she begins to rock side to side and cover her ears.  Her face turns bright red.  We know our daughter.  Once we lose her, there is no getting her back.  There is no talking her through it because she can’t HEAR your attempts to comfort her over the sounds of her own hyperventilating.  We know we need to cut this one off QUICK.

Music.  Let’s do music.  Oh, crap.  Those CD’s I brought are useless.  We’re not at therapy where they have a CD player in every room.  We’re at Children’s Hospital.  Quick.  Get out my phone and turn on some internet radio and pray we get a decent signal deep inside this giant concrete structure.  Oh, thank the Lord it connected and it only “buffered” for a few seconds and now Ed Sheeran is crooning away and Libby is INSTANTLY calm and smiling.

The nurse is amazed.  I’m not kidding, her jaw actually drops and I’m pretty sure I see her welling up.  She presses her hand to her heart and tells us that is the sweetest thing she has ever seen.  At least I think that’s what she said, because she has started mouthing her words instead of talking to keep from further disturbing Libby.  All I know is that she is clearly very touched.  After finishing her questions with Dad (who said he had a REALLY hard time understanding what he was being asked since she was only mouthing and hand-gesturing to him), she leaves and returns just a moment later with a gift for Libby.  A gigantic Blues Clues book for her to take home.  Libby’s never gotten a gift at Children’s before.  Just a lot of confused looks about what set her off into such a tantrum.  This time, because we get to know her better each day and we are also getting better at preparing for and managing her appointments, she got a gift because suddenly she is the most precious thing ever.  It is SUCH a sweet gesture.

So now the music is playing and we are alone in the room waiting for Dr. A.  We love her.  She’s really soft-spoken and hard to understand because she’s SO good at what she does and rattles off explanations and diagnoses so quickly our heads spin.  BUT she helps by drawing pictures and writing notes as she’s talking.  Upside-down, I might add, which is amazing.  Also, she’s the one who got Libby sleeping through the night FINALLY at age 2 ½.  So yes, we love her.

She enters the room, and doesn’t bat an eye at the music playing softly through my phone and the mess of toys on the floor as Libby plays her favorite game, “Find small noisy toys on the chair/couch/table I’m standing in front of, throw them on the floor and hear the funny sounds they make as they drop, and wait for someone to pick them up and give them back to me so we can start the whole process all over again.”  She greets us in her very soft voice, partly because that’s just how she talks, partly because she’s starting to know Libby so well.  She gets right down to business with the physical examination.  She takes off her super-cute high heels and plops down on the floor right behind Libby to look at her muscle tone and listen to her heart.  She does all she can to disturb her play as little as possible, and bobs her head to the beat of our music, not even questioning why we’ve chosen the One Republic channel on Pandora instead of the Disney one.  She know parents as well as she knows kids :)

After checking Libby over, Dr. A motions to Dad that he’s free to take Libby out for a walk in the halls if he needs to.  Now is the part of the visit when she and I talk and she draws me a bunch of pictures, and again there will be the sounds of the computer keyboard clicking.  She knows that’s not a favorite thing for Libby.  She knows that Dad comes along mainly so that he can get her out of the exam room and push her around the clinic hallways during this part of the visit.

Somehow today Libby is doing great.  We brought her favorite little ball, a hard plastic one with a little rattle inside.  She’s enjoying throwing it across the room and hearing it bounce off the tile floor, making a totally different sound from what she’s used to hearing when it falls on carpeting.  She’s focused on the ball and jamming out to Pandora, so Dad and Libby stay in the room for once. We discuss her meds and diet and how much water she drinks and if she’s peeing enough and how she’s sleeping and how teeny tiny she is, but HOORAY she’s finally made her way back onto those dumb growth charts that everyone gets so excited about.  Which – now that we’re back on it – I’m very excited about.

We wrap it up quickly.  I don’t know if her schedule is just that full, or if she KNOWS how things go with Libby Joy and she just always moves it along more quickly for us. Libby gets a hospital bracelet with a barcode for the lab.  They know not to put it on her because – you guessed it – meltdown. Instead they hand it to us and five different people caution us not to lose it during the arduous journey down to the outpatient lab which is literally one floor directly below the Endo Clinic. We strap Libby back into the stroller and I keep the music playing, burying my phone in the folded-up sun shade above her head.  People in the waiting room and elevator think we have a musical stroller, just like they always do at Target and at the park. Libby is smiling and dancing with her hands and feet, because she thinks we’re done.

In the elevator, I gently rock the stroller back and forth like I did in the waiting room.  Elevators are another Very Scary Thing for her.  Try closing your eyes sometime on an elevator and experiencing how it actually “feels” and then also try to wrap your head around being a baby with no concept of what an elevator is or why we are using it.  I can understand why it’s pretty freaky for her.  I say, “It’s okay, honey, almost done with the elevator” about ten times.  The janitor looks at me curiously.  “She just doesn’t like elevators,” is my simple, standard explanation.

We arrive in the lab and I hand off the stroller to Dad.  He keeps her moving while we wait because there are three other kiddos ahead of us, waiting to be punctured.  They will get stickers and/or suckers, or maybe ice cream on the way home, for being so brave.  Stickers are lost on Libby, nor would she have any clue what to even do with a sucker, and although she does like ice cream, she would have no concept of how it relates to having been stabbed in the arm.  But I digress.  I sign Libby in, and revel in a moment’s peace as I sit and wait while Dad pushes her in the hallway outside the waiting room so as not to disturb the other families with our musical stroller.  “How on earth,” I wonder, “would we ever do this visit without Daddy?”

Her name is called and we charge into the room on a mission.  We’re out of tricks and tools; there is no longer any way to keep her from screaming.  Let’s just get this over with.  We lay her down on the dreaded crinkly-paper-covered table. The whining starts immediately and there is panic in her eyes.  We have new lab techs every time. I see them automatically going for her right arm, but I stake myself out on that side of the table and ask them to try the left instead.  She has a large hemangioma smack dab in the inner crease of her right elbow, right where they would want to draw.  I hold her right hand and reassure her that everything is okay as they expertly wind the tourniquet around her tiny left bicep.  Her terrified eyes scream at me that this is NOT okay. Dad takes over stroking her head and whispering to her as I take advantage of her wide open, screaming mouth and check the status of those last two molars that have been taking their sweet time coming in.  Yup.  Finally the top one broke through.    Bottom one can’t be far behind. Tech #1 finally gets the needle in while tech #2 holds her kicking feet so that she doesn’t flail right off the table.  One time a rather pregnant tech tried to take that spot, not realizing what a kicker she would be.  Yeah, that didn’t last long.

Today’s draw takes a little longer than normal but still less than a minute.  As soon as the needle is out, we jump back into action.  Sweater goes back on, music is resumed, put her back in the stroller, and give her a nice cold cup of milk.  We know she’ll be fine once we start moving again.  The elevator ride back down to parking will be iffy, but she will be all smiles again by the time we get back to the car.  We leave the lab quickly, shooting apologetic glances at all the parents still waiting whose kids now look terrified after seeing a screaming baby emerging from behind the big, scary closed door.

Back in the car, she starts to scratch at the covering on her car seat.  She likes the sound it makes, and she’s reassuring herself that she’s actually back in the car seat and we’re truly done.  We pop in one of her favorite CD’s.  I had purposely pulled this one out of the rotation for the last week, so that it’s fun and special and really cheers her up after this appointment.  She grins from ear to ear.  We don’t hear a peep the whole way home.  The milk we gave her after the blood draw had Boost and a couple other things in it to jam-pack it with nutrients and calories, so that she can skip lunch and go straight to bed when we get home.  Getting to skip lunch is her “sticker.” The kid hates to eat.  She and I are way too exhausted to even attempt it.  She hugs her stuffed dolphin tightly, rolls automatically onto her tummy, and doesn’t move for the next three hours.

This appointment was a half-hour, tops.  Compared to other appointments we’ve experienced in the past, it went very, very smoothly.  But it didn’t go smoothly by accident.  It took a lot of careful planning and packing and practice, practice, practice at countless other medical appointments that went not-so-smoothly.  This whole experience at Dr. A’s office is fairly representative, though, of the careful planning and strategizing that goes into every facet of our lives.  People spend time with us in our home and observe how we have learned to modify around Libby, and say “I just couldn’t do it.  You must be exhausted all the time.”

Well, yes.  We are exhausted.  Isn’t any parent? Any HUMAN? :) But yes, you COULD do it.  Ask me three years ago, watching another family going through this, and I would have said the same thing.  But like anything in life, you learn and you grow and you just adapt, faster than you would ever have imagined you could.  Ask me TWO years ago, when she was already in my life, when I already knew that she was blind and we would have some big challenges, if I could handle the full reality of Sensory Processing Disorder that was heading my way.  Again, I would have said no way. 

Thanks be to our gracious God, specifically in this moment for revealing HIS plans in HIS time, not our time.  I can’t count the number of times while waiting to be a mom that I begged and begged Him to reassure me with a sign or a dream or some sort of glimpse into my future.  Can you imagine if He had? Even if He’d shown me a good day, a successful day, like the day this past week we took Libby to see Dr. A.  “Are you kidding me, God? Look at the bags under my eyes.  And clearly I’m not running anymore, I look terrible! What’s with all the bags and toys and snacks? How many hours did that take to prepare? MAN, that kid is shrill! What’s her problem? Why is she so upset?”

If I had looked ahead into the future and seen all that, I might have missed the part where I held her close and smelled her hair and admired her beautiful golden curls.  The part where I gave her a big, noisy smooch and she giggled.  The adorable part where she and her Daddy engaged in a five-minute conversation made up entirely of popping noises and the words “dooka dooka.” The part where I cried AGAIN when they stuck her with the needle, like I do every time, because I just love her so stinking much and I HATE that terrified look in her eyes.

I might have said no. 

We literally filled out a “checklist” of special needs as part of our adoption paperwork. We were asked to assess pages and pages of conditions and syndromes, and check “yes,” “no,” or “willing to consider.” I don’t think anything Libby has was actually on that list, it’s all so rare.  But to think I was actually in a position to say NO to the child who was so clearly meant to be mine from before time began.

This is our life.  We are SO VERY BLESSED.  The purpose of these 3000+ words today was not to solicit praise or pity or another round of “I just couldn’t do it.”  The purpose was to get YOU thinking about YOUR life.  Your kids, your work, your circumstances.  I know it’s hard, mind-numbingly so, and you might just cry if you actually sat down and thought about the details of what it actually takes to get through a simple, half-hour task.  Your present circumstances, set inside the framework of your unique life experience, are something no one else can fully understand.  You’re exhausted.  I just couldn’t do what you do.  If you’d been allowed to press “fast-forward” and view your life today, five years ago, you, too, might have said “no.”  But there’s a reason we don’t get “fast-forward” buttons.  Enjoy today as the gift from God that it is.  Today, hard as it is, is preparing you in some way for all the unknowns of tomorrow.  So that tomorrow, your “I couldn’t do it” turns into, “Yeah.  I’m doing it.  And I love it.”