December 10, 2014

Expect the Unexpected

D Day.  Everyone remembers where they were the moment that happened.  The D Day of which I am speaking has nothing to do with World War II.

D Day to special families refers to Diagnosis Day.  That is the day that time stood still.  That is the day that your world started disappearing before your eyes.  That is the day that your stomach grew a sickening pit that wouldn't go away for months.  That is the day that you found your very breath sucked right out of you, not to return for quite some time.

Special moms all have incredible tales to tell about their D Day.  How unfeeling, atrocious, unexpected, how poorly delivered, etc. the information was relayed.

Mine was no different.

We had just spent a straight 8 weeks in Children's Hospital with Bridger for a variety of illnesses and for placement of a g-tube.  He had undergone several dozens of tests prior to that hospitalization and he continued being tested during that hospitalization, in the hope of finding a diagnosis that explained what was going on.  We had nearly exhausted all possible tests that they suspected based on his symptoms.  The last round of tests was performed in our final days inpatient.  A pair of geneticists had been into our room several times poking and prodding at Bridger, picking apart his every physical characteristic.

"Look at his eyes - are they different to you?"

"Hmm, his feet, what about his feet?" 

"His nose, I may have seen a nose like that before."

"Look at his bum cheeks!! Oh my, don't you think his bum cheeks are flat?"

Sitting in my vinyl chair across the room, I had heard enough.  "Have you seen my husband's bum cheeks? They look just like that!"

They dropped their scrutinies to a whisper after that.

Just prior to discharge, one of the geneticists came to my room to inform me that all of the test results had come back, with the exception of one test, and that everything was negative.  He informed me that he believed, based on the other test results, the outstanding test result would be negative as well.

That did a lot to boost my confidence that all symptoms could be summed up as "benign hypotonia" - a developmental delay that would soon close its gap.

Fast forward a few weeks.  I was at home when the phone rang.  I ran around trying to find a cordless phone and at the conclusion of the 4th ring I resigned to run to the den and breathlessly answer on the corded phone. As soon as I had said my greeting I heard the geneticist announce himself and promptly go into the purpose of his call.

"Well Mrs. Larson, the final test result came back and it was positive for Congenital Disorder of Glycosylation type 1a which is located on the blah blah blah gene which is common but we also found a second less common mutation on the blah gene.  Proteins blah blah blah sugar blah blah blah synthesis blah blah some types blah  treatment in a mannose therapy blah blah but not this.  We expect that he probably won't talk, probably won't walk or maybe with assistance and will be cognitively impaired blah blah blah.  Blah blah mortality rate blah blah.  So, that is what we found.  Have any questions?  {silence} No? Ok, have a nice day."

I stood there, frozen with the phone in my hand.  There is a reason that geneticists stay behind the microscopes and are not in the front line.  While brilliantly smart, most, I have found, are lacking any semblance of bedside manner.  This guy fell square into that stereotype.

I tried to move.  I couldn't.  I slowly hung up the phone and called my husband and recited back to him the short dialogue that was emotionlessly just thrown at me.

How does one bounce back from that?  I still had four little ones that needed dinner prepared for them, diapers changed, noses wiped.  I have no memory of that day beyond that phone call and the words playing over and over in my head, "never talk, never walk."

One of the most difficult aspects a new special parent must concede in this journey is to give up a picture of the future.  All parents, my old self included, have a future picture in our head.  At some point you have thought what it would be like when your child is potty trained, when your child is no longer in a car seat, when your child plays the next season of little league, when your child drives, when your child goes to college, or envisioned a picture of them in your mind as an adult - married, with children. . . we all carry around a future picture in our head without consciously realizing it.  When newly special parents are referred to me to coach them through the beginning steps on the path of Special, one of the key pieces of advice I offer to help them cope and reconcile emotions they are feeling is to let go of that future picture.  We have to live in today and we might be able to predict what tomorrow or next week may look like, but trying to look much further is impossible and is, quite frankly, beyond overwhelming.

I have no future expectation, but I have a lot of hope.

We have poured hundreds of hours and thousands of dollars into speech therapy for Bridger, all the while not knowing if it would ever yield a single word.  At first came receptive communication, then his first utterances of consonant sounds. . . and miraculously one day two years ago we heard our first words, followed shortly by two and three word phrases.  Today, while still limited in intelligibility and some letters still missing from his alphabet, we have full sentences.  Prepositions and pronouns, past participles and punctuation.  His vocabulary is endless and I still laugh when he speaks - because it still surprises me so.

According to that doctor, this was unexpected.

From this example and more, I have learned to expect the unexpected.  The greatest joys come from seeing those little developmental gifts that you didn't know you would.

The latest gift came in the form of a Reader's Theater presentation.  Bridger is in a general education 1st grade classroom and the class was doing a presentation for American Heritage week.  I sat, along with the other parents, in the miniature chairs with the students lined up in a row in front of us, each holding a letter of the alphabet.  They proceeded to each read a script written on the back of their letter that represented an element of the season.  Bridger was L.  When it was his turn he, just as his classmates had, held up his letter and read -- READ -- the back of his paper.  One word at a time, slowly, stopping over those words he had to think about and sound out in his head.  He concluded his reading with a proud smile.

You know those cries that make every wrinkle in your face activate and you have to cover your mouth so the sobs inside your heart don't come out of your mouth?  Yeah, that was what happened to me.  My boy - the one who was told he probably wouldn't speak was now reading aloud. Just. like. his. peers.

** the video I randomly changes to other videos that have nothing to do with this post. Refresh this page until the video thumbnail show's a pic of Bridger sitting in his wheelchair. blasted technology ** 

His sweet assistant shared those same tears with me and I am forever grateful to the hard work she and many others have poured into this boy to make this miracle happen.

Do you know why most parents don't break into the ugly cry upon hearing their child read a couple sentences?  It is because they expect the expected.  Turning the expected into the unexpected makes everything in life more beautiful.

Give it a try, lower your expectations or, better yet, let go of them completely.  You just might find a lot more to smile about if you do.