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.
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.
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