Easter Egg Hunt Musings

In my endeavor to expose the hidden thoughts of a mom with a child with special needs, I feel it would be beneficial to expose some of the random (and sometimes not so random) ramblings that surge through my head from time to time.  Also, I feel it beneficial to expose the same ramblings when thinking of my "typical" boys in light of living with a sister with special needs as well.  However, as the years pass, I am learning that many abnormal and weird things that boys do are apparently normal when speaking of boys.  This includes the oldest boy - my husband.

Let's start by letting you know that I will label these amusing brain synapses under the tag "Musings". Simple enough.  Found under this label will be the things I often wonder, but fear to ask, or ask, and hear crickets chirping in reply. This will be the section of "Is it normal for me to wonder"........ "IS THIS N.O.R.M.A.L?"

With Easter fast approaching, I will start with The Easter Egg Hunt Musings.



This is one of the very last pictures in my collection marking Life before Ivey.  It was Easter 2006.

Mere weeks before Ivey was born this is what things looked like.  The two little blondes are Knox and Walker.  They were tiny.  I was not.  As you can see my timer says - "done".  The dark beauties are my sister-in-law, niece and nephew, along with our beautiful mother-in-law.








Easter musings go a little like this.

1st Easter post Ivey:

With two toddling boys in tow, we began the egg hunt circuit with trach, suction machine, apnea monitor and feeding pump.  Just another ordinary egg hunt(s), plural because in those first few years, one hunt is definitely not enough.  Boy #1 was old enough to find his own eggs.  Boy #2 could not find eggs without us pointing them out with gusto.  Ivey was a baby so she did what all babies do best at egg hunts - she let her mama and daddy find her eggs.  Should you be wondering, I prefer tootsie rolls in Ivey's plastic easter eggs.




2nd Easter post Ivey:

Boys no longer toddling.  They are running full force in urgency to get to all of the eggs before anyone else.  Moments of dread surge as we witness every manner lesson fly out the door.  It's quite comical to watch 3, 4 and 5 year olds "search" for eggs lying in broad daylight.  And, my sweet friend, please take note that this is VERY TYPICAL BEHAVIOR FOR BOYS AROUND THE 5th YEAR!  Roll with it.  A primal instinct is flowing through their veins.  Hunt.  Capture.  Our little prodigies are devastated when teachers, parents and clergy take said hunted eggs and divide them evenly amongst the masses.  They fought hard for those egg, yet - BAM - all that hard work must be evenly divided.  Unhappy and confused children preside - crying can emerge. Again, typical behavior.  Seriously, they must all have the same number of eggs despite their valiant efforts to be reigning egg master.  There are no winners in egg hunting.  (I view this along the same lines of everyone getting a trophy for winning or lack there of.  Somewhat ridiculous.)

Now this is where it started getting interesting with Ivey.  She was still in tow with all appropriate life supplying equipment.  She was still not mobile.  She was still hearing impaired. She was still blind.  Thus, she still required someone to hunt her eggs for her.  Just a wee reminder if you missed it earlier, I really like tootsie rolls in Ivey's easter eggs.  Nevertheless, we, her parents, and several diligent friends made it our life's mission to locate talking eggs.  You know, those for the blind.  By George, Ivey was going to have as typical an Easter as everyone else.  Friends were valiant in their efforts, as were we.  I couldn't imagine Ivey not having the same experience as the boys, as the image I had in my mind of a blissful Easter.

(Side note - To this very day when I am all alone in the house and down in the dark spaces of our basement, one of those blamed eggs will start talking out of the complete blue.  And they say, "Hello, is there anybody out there?  Let me out. Let me out!"  They are freaky.  I silently hate them.  Sorry Lori.  I really have tried to love them.  I can never figure out which one is still "on" because they only talk when I walk away.  These things are worse than clowns.)


3rd Easter post Ivey:

It hit me.  By this point some serious life adjustments had taken place and I was starting to get a hold of life with my blind child. To be cautious, I have no idea what life is like with other children who are blind. 

Life with my blind child is quite simple.
Everyday is an Easter egg hunt.  Every . Single . Day  =  Egg . Hunt  

Why in the world was I worried about talking eggs?  It was hard enough trying to find things that are stationary day in and day out.  And did I really want her hunting those freaky little eggs screaming "Let me out, let me out?"

 It was then that I had one of my first great awakenings.  (Yes, this is just one, there are many.)

Maybe, just maybe, all things typical were not something Ivey would give a hoot about.  Should I give a hoot about them?  In a different type of blind world, maybe egg hunting is fun, just not in Ivey's world.  I always feel like it is us trying to stuff our girl into a pre-made mold.  She just doesn't fit.  Ever.  And - that's okay.  Seriously, it's okay.  She was made to shine.

So we struck a balance (at least we tried) between the two worlds our children reside - somewhere between 'typical' and 'special'.

STILL - I can't help but think that egg hunts are the oxymorons of the blind world.

............................

Three lessons come from this -

First, you will have your "something(s)" that just don't fit anymore.  Go with it.  There will be many.

When these girls entered our lives, the world came crashing down.  It crashed, which means something broke.  Not everything broken needs to be fixed.  Replace the broken with something stronger.  An egg hunt broke me, but you will have your own something - it will be okay.  Build.

God gave us these beautiful girls to see the world from a very unique angle.  There will be slivers of pain when you just want her to experience what YOU know as normal, push through it.  Eat a tootsie roll, they always make me feel better.  Live the life that is given  - expect the unexpected.  Most things still shock the hell out of me.

And yes, this world is often lonely, very lonely, but beautiful.  Find someone who can celebrate the crazy talking eggs and with you.  That will be a journey far beyond any journey.  That will be a friend who is special, sent especially for you.  Let them in.

Second, the importance of Holidays will shift.  Holidays will be different from here on out.  You will see less of the marketing and more of the meaning.  Be grateful. We only have one trip around the sun.

Third, don't forget the boys.  They need the typical.  Do your best.  Make memories. This will often take an unimaginable amount of effort.

And the silent fourth, it is okay to ask, "Is this Normal"?  I do this every single day.
............................

Now we have hit a new phase.  Easter egg hunts seem to be a thing of our past.  At least now I can stick with the "age appropriate" thing to do at Easter time.  With a few years down the road .....  I couldn't even find a picture of this past Easter.  So a Christmas picture it is.  Just so you know - I am trying to take my own unsolicited advice.

                                                                                                                            Christmas 2015

The Preface

This is a preface in the somewhere middle of our story.

A preface, as Paul Harvey would have said, to the "rest of the story".

I am a reader.  A trait that comes straight from my mom.  Storylines along the fringes of Kathy Reichs and Harry Potter can be found in my reading stack.

However, I am also a reader of realistic women.  My favorites range from Jen Hatmaker to Glennon.  I need wit and humor facing 'real' life in the trenches.

But, the one book I cannot find, the one I have been in search of for many years, is the book about a  medically complicated, developmentally delayed, deaf-blind kinda family -- surviving.  Happily.

I do not use the term 'survive' loosely.  Surviving comes in all kinds of kinds, with unique skills, and most importantly, the ability to flex through a range of pressure cooker temperatures.  Let it be known that keeping your nose just above the water is, in fact, surviving.  Surviving can also be accomplished drinking a margarita near a beach at a far enough distance from Home that I can actually enjoy the margarita. (Just recently it took visiting a friend in California to enjoy said margarita.) Or surviving can be seven consecutive nights on the fringe of awake and asleep - listening for the shoe to drop -

Surviving includes the Bible and her bible...  One with instructions for developing my person, the other for keeping my kid alive should the proverbially shoe drop when I am out on a date night.

I have found many articles centered around a "special child".   I have found many more focused on the sludge of the "special world".  There are countless articles about the things you don't know about a special need family, what it is like to be the parent of a child with special needs, how it feels to be the mom, how to be the friend to the mom, what dads feel being the dad, what it is like to be the sibling, the list goes on and on...

Once I had an unknown person ask if I was 'Ivey's mom'.  She magically picked me out of a crowd in a downtown store.  I thought I was rockin' the 'I Am Ivey's Mom Look'; however, she put me in my place.  Her response, "You are not what I thought you would be."  Let's just say, I lost sleep over that comment.  Still do. What exactly am I supposed to be?  I worry about this often - which is just fine since I worry about most everything often.

I hate to disappoint, but whatever the imaginary image of what/who Ivey's mama should be, I am probably not it.  I stick my foot in my mouth often, I can be sarcastic, I laugh in stressful situations that need poise yet after all these years with Ivey, my threshold for composure is flawed.  I am living out the rainclouds through the silver linings sporadically and haphazardly.  (I imagine my best friend sees me more as a hot mess most days with a desperate need for sleep. The fact that she has stuck by my side through these years still shocks me.  She is my steady.)  I am not perfect, nor is any member of my family.  I DO try to be purposeful and intentional.  However, my not so positive plus, I reign on the side of being compulsive in the need for my surrounding to be very organized.  It keeps me balanced.

I have an extremely hard time hearing and accepting any word that references 'impossible'.  Yet, there are many days I am sure my husband would classify me as utterly 'impossible'.

So this is the preface to the preface.

In my search to find normalcy to my ever broadening range of emotions raising a child with significant medical needs with significant developmental delays and deaf-blindness, all the while raising two boys, trying to keep meaningful friendships, loving the same man I fell in love with 20 odd years ago (I was still in college) - I have yet to find the person with courage to tell about the life.  The real life and how all of the living parts of life outside of Ivey survive too.

And then just a few short months ago, one of my most loved people in the whole world became a mom to a daughter with special needs while simultaneously becoming the mom to a very typical little boy.  So my sweet girl, this is the normal life.  I will hence forth spill all of my secrets to moderately surviving this special world while continually overcoming the urge to not bury my husband in the backyard.

My disclaimer.  Not one person is required to read these words.  But sitting with my friend and knowing so deeply the journey she is embarking on, well, she made me want to write again.  This is for you.  And you are such a woven thread in our story.

Turns out the book I've been looking for has been written in my heart all along.