Jake’s Fingers: Thankful for Normal

Very few people understand what I go through every time I take Jake, or go myself, to a doctor’s appointment.  It’s at best tense, at worst gut-wrenching.  My usual sense of “whatever happens is fine” is reduced to praying desperately and even then my prayers are only coherent to God Himself. 

I’m sometimes envious of those fellow waiting room inhabitants who can calmly flip through a magazine or text their friends.  I’m thankful that their life experience hasn’t taught them, yet, to fear their medical file, wondering what fresh set of news it contains.

My fears are sadly well founded.  I can’t count the times I’ve gone into what I believed to be a routine appointment to be met with a serious-faced doctor who tells me that there is “something wrong”.  I hate that deep breath they always take before they hem and haw their way through the news.  I’ll never forget the floor falling out from underneath me when a doctor told me that he was sure I had breast cancer.  Or a month later when discovered I had to do chemotherapy.  A year after that, I was mistakenly told that my cancer had spread.  Even though we cleared up the mistake very quickly, it still scared me half to death.  A few years, and six surgeries later, I went for a routine physical and found myself on the operating table four days later as doctors searched for ovarian cancer.  Thankfully, it turned out to be very bizarre ovarian cysts.

When I was pregnant with Jake, I spent a weekend in tears after my doctor told me that my uterus was shrinking and that I was probably going to need an emergency C-section the next week.  It also turned out to be not true (I wanted to smack that doctor).

Then, sweet Jake has had so many things not go right for him.  His eating, hypotonia, severe acid reflux, and the diagnosis of sensory integration disorder.  I would rather be sick myself than to have to hear that there is something more wrong with Jake.

So, hopefully, you can understand how I feel when tests come back normal.

And, normal is a lot of what I’ve been hearing lately.

We had his hearing test a few weeks ago and it was normal.  His vision test was this last week and the optometrist told me that he is a very smart boy and that he has great vision.

The last round of blood tests, stool samples, and urine specimens all came back normal.

Most people cry over bad news.  I’m the one that gets in the car and cries over good news.  It’s so rare that we hear that everything is alright that I never, ever take it for granted.

We still have a ways to go before things are “normal” with Jake, but I’m okay with that.  It’s nothing that hard work, consistency, and love won’t fix.

As a result of some hard work and being a pain in the behind, we got Jake assessed through the school district (which I will write about in another post) and he scored low enough in both cognition and communication that we qualify for services.  (And, before I get a hundred angrily supportive comments, Jake is NOT low in cognition…more later.)  So, the good news is that within the next month, we’ll have a speech therapist working with us at home.  The conflicting good news is that the organization that wants to help us out approved our lower payment plan, BUT they will only approve speech.  So, the frustrating thing is that he needs speech, occupational therapy, AND physical therapy, but is only approved for speech.  I have a decision to make about who to go with in the next week or may try to start the application process over for the foundation to pay for physical therapy instead of speech.  And, if you think this is confusing, you’re right.  I frequently take extensive notes on each place and person just so I can get it all right.

Therapy this week was a little rough since Jake’s birthday was Monday and that didn’t leave a lot of room for being disciplined.  But, really?  Who cares!  It was the only 2nd birthday he was ever going to have, so I’m glad we lived it up.  🙂

Becky didn’t mind that Jake was being a little more ornery than usual.  It actually gave us a little extra time to plan out our last two sessions.  Since it looks like we can’t continue with her (whimper), Becky is going to teach me how to do his therapy until we can start back with her in January.  I have a few reading assignments as well as needing to write out two snack therapy sessions and she’ll grade them, with the purpose of helping me to plan the perfect snack therapy for Jake. 

On the subject of thankfulness, I am so grateful for Becky and all the work she has done for us.  I know there has been a great deal of work on her part trying to get us approved to stay with her and I also know she will be as sad to see us go and we will be tearful to leave.  She has been patient, kind, sweet, firm, and insistent that Jake progress.   She was also the one who pointed us in the direction of his miracle working Benik vest.  For that recommendation alone, she deserves a medal!

I thought a lot more since I wrote the first part of this post about needing to concentrate on being thankful.  There are so many things that Jake does well but I find myself, almost by necessity, focusing on the things he needs help with.  So, this week, I’m going to write down a “Thankful for Jake” list of everything good about my little monkey.

Even though, “normal” probably won’t be on that list, let’s face it, we can always use a little not-normal in our life.  The bad reports from doctors, the crises, the financial messes, and countless other tragedies enable us all to be thankful when life is just…normal.

Advertisements
This entry was posted in Jake's Fingers and tagged , , , , . Bookmark the permalink.

2 Responses to Jake’s Fingers: Thankful for Normal

  1. cheekypinky says:

    WOOO!!!

    Normal is just so…nice….isn’t it?

    I am so proud of you for being the best advocate possible for Jake–
    and for you.

    You’ve got ovaries of steel, friend.

    (and someday? if Jake is being a silly teenager? send him to Auntie Becca.
    she’ll tell him how truly kick-ass his mama is.)

  2. Brenda says:

    No kidding, Beck. If any of us EVER catches Jake sassing his mama, he’ll have a bunch of aunties on his case. 😀

    Love you, Mia. Here’s to normal – let’s have a bunch more of it!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s