Friday, August 9, 2013

Welcome to the Club: Words I wish someone would have told me when our son was first diagnosed.

"I remember when I first realized we were going to be parents. It was a miracle and surprise, and although we feared we weren't yet ready for our unexpected blessing, we quickly began singing a tune of expectancy at our future bundle of joy.  I remember choosing names—I chose a girl name and he chose a boy name.  I remember the wonderful 3-d ultrasound at 16 weeks where we got the news that we would be blessed with a boy, thereafter referred to as E.  And I remember feeling the bliss of expectant parents as we began to dream of who E would be and what mark he would leave on this world.  Would he be like me?  A poet, an empath, a dreamer with his feet on the ground?  Or would he be sharp, detailed, disciplined, and graceful like his father?  Would he be smart like us, would he like concerts and music and seeing the world and reading books about far away places?  Would he have my warm, goofy sense of humor or his dad’s dry wit?  Would our future president-astronaut-physicist-hipster-genius-doctor-son be supercool or supersmart?

I remember, at nine months,  that our little guy bypassed the mundane “ma ma” and “da da” for words like “hot dog,”  and "fantastic," spoken with his little baby voice but the clarity of an adult.  It was, to us, both striking and awe-inspiring.  I remember gushing to my friends and my customers that I just knew I had birthed a genius and that the world would be in his hands...."


Welcome to the Club:  Words I wish someone would have told me when our son was  first diagnosed.

An open letter to parents when they first get a diagnosis:

Dear Parent who is where I once was, not so very long ago:

I want to tell you what I wish I had been told.  Wish I had heard or known when I struggled with our son's diagnosis.  When we were given nothing but fatalistic prophecies by others who had been in our boat.  When we mourned the "loss" of our only son, E.....  

When you first get that diagnosis, I want you to close your eyes.  Take a deep breath.  Mentally pack your suitcase to take a journey that in your wildest dreams, you never were prepared for.  

Then cry.  It is okay to cry because:

It will hurt.
In the beginning, I always like to refer to the Welcome to Holland anecdote. 

Google it. 

It's a simple metaphor for your grief.

Let it sink in.

And then let me give you some insight I wish I had been given at the time that our son was diagnosed.

This going to seem invalidating at first.  I want you to know it's not.  

Your child will need you to understand this.  

   You haven't lost anything.

It seems like it. I know it.  I've been here.  

And it hurts.....hurts like hell.

And that is normal.  Don't let anyone else guilt you otherwise.  Grieving is normal and healthy and if you never face it down, you will live with it the rest of your life.

But I repeat:  You haven't lost anything.
You see, we are promised nothing  of our lives at our birth or at the birth of our children, although we all like to believe that we are.  Inherently its those whispers of wishes and promises that so often draw us into having children in the first place. To have the opportunity to relive our favorite childhood memories.  To dress up and dance and be young again.  To color and draw and to give our children the things we never had.  To have new joy as an adult for Holidays like Christmas and Halloween.   

When faced with a diagnosis, we grieve these wishes as if they were concrete promises made between the world and us.....written in stone that our children have so much to look forward to, things and times and memories we cannot wait to deliver.   

 But our children--no matter who they are, what intentions we have-- are promised nothing.

And although that SOUNDS negative, it isn't and I will explain:

When you received your child's diagnosis:

Your slate for your child has been wiped clean. 

Even though that is scary, all children's slates are inherently clean (even though we fill  them with our own expectations)

There is something liberating in that that you would have never known without running into an issue early on how clean your child's slate is and how promising that really is.

 You see, we really have no control over life:
Our children can be born completely "healthy" and then  develop diabetes.  They can be born with cancer, then miraculously beat it. They can grow up "normally" but become addicts. They could fall into a depression and commit suicide. They could be bullied.  They could be the bullies.  They could divorce time and time again seeking happiness they never find or they could be homosexual and never marry a day in their life. They could graduate at the top of their class and then suffer a brain injury from falling down on the sidewalk. They could be ANYTHING or NOTHING. 

We take for granted those things when we think that A + B will always equal C. 

  • But with a clean slate, there is a freedom to accept and live with joy for every single moment. 

With a clean slate, we aren't rushing through A and B to see the results of C. 

While in the process of planning for our child's "new" future, we don't take that planning nearly so much for granted when we see a blank slate and realize the magnitude of what it means to help another human being to find their way in this crazy world.  In fact, it makes us step up in a way we never realized we were capable.  [like this right here.]

We will pay more attention to our children's victories because we aren't comparing them to "averages," "expectations," "the Jones's children", etc

And those victories will mean more because they stand alone in comparison only to your child as a unique individual. 

We will pay such closer attention to what makes our children tick; we will discover their unique patterns, like the whorls of fingerprints of their soul.  

We will pay attention to those patterns and learn to work within those very patterns to create outcomes. While soul searching within our children, we will learn so much about ourselves in the process, about our own likes, dislikes, wishes.

 And in this journey, we will also learn that the pain we feel for our losses, they are OUR losses, not necessarily our children's. 

"I love Christmas.  I love the joy and spirit of compassion and giving. My son hates it. I always imagined giving him the things I never got as a child of poverty.  He hated the thought of opening presents.  It hurt me to feel like I would raise a child who hated Christmas and I felt that, at first, my son was LOSING OUT on Christmas or that as a parent, I was getting the raw deal.  The proverbial shaft. My son, instead, loves Halloween, the silly, whimsical merriness of dressing up and meeting strangers. It wasn't my favorite holiday before; sometimes I skipped the celebration of Halloween altogether as an adult. I PERSONALLY felt like Halloween was less important than Christmas.  But then I saw MY Christmas joy on my son's face as he looked in the mirror at his facepaint and costume and I realized that everyone's Christmas is different and that's okay.   And then I stopped projecting that impression on him that my way was better, that I knew what he needed to be happy;   and then I began followed MY SON's cues, and lo and behold, Halloween has become a "season" for my family and we look forward to seeing the joy it brings our son every year that brings out our giving, compassion, our "spirit," as I had always hoped with Christmas.   Yes, I had discovered and learned to share HIS joy, HIS expectations, and learned that while we share a family and experiences, that ultimately this was still HIS LIFE and he had a right to build it in the manner best for him.  I learned that him not loving Christmas is MY issue, not my son's and I stopped projecting MY expectations of his life onto him.  Over time, my grief began to abate because I discovered a wiped slate that my SON could create his life in; where I could see the joy I wanted for him brought to him by his own uniquely favorite things, times, and places. Holidays were no longer based on expectations that I had for no other reason than he was born and I loved him. There is freedom from stress in that and freedom for your child to learn to love HIS or HER OWN identity, his OWN slate because he is comparing only himself to himself. His slate can remind him that today he is a better person than he was yesterday, not better than anyone else nor any worse than anyone else.  Just apples and apples.  I have now helped my son to fill his slate with HIS strengths, HIS personal satisfactions, to catalog and understand HIS weaknesses, HIS successes, HIS wishes, HIS expectations, HIS favorite holiday seasons. We have paid attention to HIS patterns and learned the secret to helping him harness HIS abilities to mitigate some of his challenges. He is building his own life at his own pace meeting his own goals and on his slate, this leaves room for celebration, not mourning. He doesn't have to feel like he can't measure up to expectations that were never meant for him.  His personal slate has left no room for him to come up short compared to others and so he slowly builds the confidence and worth he needs to be the best HIM that he can be."
 He has flourished

I have flourished
Please, don't mistake me.

I'm still a little wistful over MY losses; losses like Christmas or the Zoo or weekend birthday parties or the County Fair.

...But my perspective  has grown  and I have learned that these never  were his losses if they were never his loves in the first place.  Mourning them for him only speaks that I am still living by my expectations, in the land of promises and wishes that were never mean to be
"The answer hit me, just as unexpectedly as the pregnancy.  It came to me when he was away and I was doing homework. It came to me out of left field, even though IT had always remained quietly waiting in the dugout.In the literature.  On the internet.  In the videos.  In my textbook.  In a very small chapter in the back of the baby book—there was our little boy.I remember feeling torn.  "If I utter this then IT will become true."  If I tell him then, he too, will have to have this same pulse-pounding, heart-wrenching, bittersweet realization.
With the heaviness of despair crushing the room I watched the weight of the facts, in black and white and in boxes checked off with my very own hands as the papers and his heart sank with the lowering of his hands. I remember seeing his heartbreak as it filled his eyes with quiet tears. We knew then what we could no longer deny.

At first it hurt, hurt like death.  There’s that grieving process.  Admitting it.  I mean, not just to others; that is the easy part, but to ourselves, that this is REAL.  Accepting that the image that we created for our child, all the dreams, all our imaginings, all those moments that we looked forward to and had created, in our minds,  were all just figments of our imagination.  We had to accept that the reality was that at two, we really had no idea of what his prognosis would be, and that it could very well be a much more grim reality that what would have ever conjured on our own.  We had to accept that the truth was that he would probably be bullied.  We had to accept that he might very well live with depression and loneliness and low self-esteem.  We had to swallow that “hot dog” didn’t equate with “supergenius” and that there was  possibility that our child would not even succeed in school, much less become valedictorian.  We had to come to terms with the notion that my child may never have friends, may never have a date for a prom or homecoming, may never find a meaningful, stable relationship, and my little baby may never have a job, live on his own, bear us grand-children....All those subconscious hopes and dreams that we have for our children…a happy, satisfying, fruitful, blessed life?  We had to be ready to realize that there was a serious possibility that the future we’d envisioned for him was just that:  our own conjuring and not his destiny.

What does this MEAN?  Not just Webster "mean," but MEAN in all seriousness of the word.  I used all of the knowledge I gleaned from being a child and family studies major, pored over books, read websites, scholarly journals, connected with people, people who finally GOT IT, people who could help us figure out what IT is and how to deal with it.

In three weeks, E will turn three.  He can use a number of phrases.  He knows his alphabet, from A-Z, can count a few numbers withstanding, to 100.  Knows his colors, his shapes, a few sight words.  Possesses a killer vocabulary, ever growing with his curiosity.  He can ask for cookies, cake, his sippy and chicken.  In fact, he can bok like a chicken while asking for chicken, and can even help me cook it with a surprising ease for a three year old boy, despite that one year ago, his prognosis looked bleak and our hearts were heavy. 

But today?  Today, I know better.  Today his slate is full of his handiwork, beautiful artistry all painted on by him, in colors and mediums and shades he chose.  It's beautiful, unique, and nothing I could ever have imagined by myself and the result is the most beautiful thing I have ever seen.  I remind myself, it's not my job to fix IT or change IT or to mourn IT, but rather to help him to embrace himself, his IT and his everything in between.  The rest--it's up to him...."
E, now at five years old:  reading on the second grade level, social, verbal (actually verbose, but hey, who's complaining??).  (First Day of School 08/08/2013)

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