Dear You,

It's pretty often that I meet or hear from someone who is new to the special needs world.  Either they just met the baby they expected to be "perfect" - but isn't - and they're still in shock... or they just received their child's diagnosis... or they are just starting to realize that their growing infant is growing - but not progressing.  I am often asked the questions, "How did you come to accept your situation?" or "Did you ever feel angry?" or "How do you cope when you just want to run away?"  Although it hurts me to feel their anguish and despair, I love the chance to answer these questions and help these new Moms or Dads see their child - and their life - in a new light.  

 

This letter could be to anyone... but it is specifically for you. And you know who you are.  *smile*

*****

Dear You,

I see you.  

I see you standing over that isolette... that crib... that bed... watching your imperfectly perfect child as he sleeps.  I see the tears.  The rage.  The fists at the sky.  I know you're asking WHY ME???  WHY US???  And just as those words come out, you want to stuff them back in because the guilt is overwhelming.  I know you're thinking WHAT DID I DO??  IS THIS MY FAULT!??!  As you look at his chest rise and fall, and feel your heart about to break, I see you.  I want you to know that it's okay to feel angry.  It's okay to ask God WHY ME!?  It does not make you a bad person - and it does not mean you don't love your child.  I see you as you stand there - because I once stood there, too.

I hear you.

I hear you as you cry in the dark... wondering if you'll ever be able to use all of those beautiful baby gifts from your shower.  Wondering if your child will be able to use any of the toys you've been picking out for nine months... wear the clothes you've washed and hung.  Wondering if your child will be able to breast feed - or even bottle feed.  I hear you as you cry about your broken dreams, your dashed hopes and your fears that you can't do this.  I want you to know that it's okay to grieve the baby you thought you would have.  It does not make you a bad person - and it does not mean you don't love the child that arrived.  I hear you as you cry in the dark... just as I heard myself five years ago.

I feel your fear.

I feel it as you are bombarded with medical information that is so overwhelming you tune out.  I feel it as you are shown how to administer medication, insert a nasogastric tube, handle a seizure, adjust settings on a machine that allows your child to live and breathe or are buried under insurance paperwork that makes your head spin. This wasn't supposed to happen.  It wasn't written this way!  The hardest part of having a baby was supposed to be the labor - and your spouse struggling with installing a carseat for the first time!  Not this - not ANY of this!  It's not fair!!  I feel your fear as you do everything for the first time - and worry that you'll never be able to get the hang of it.  I feel all of these fears whooshing back right now - because I once had them, too.  And some days, I still do.

I want you to know that you're right.  It's not fair.  To anyone!  And I want to tell you to let yourself feel everything.  Let yourself be angry - at God (he can take it!), yourself - the world.  Let yourself cry - it's good for you to get it out.  There were many nights when Gavin was an infant that he cried for hours and hours - and I'd cry right along with him.  We felt each other's pain.  Let yourself grieve.  You expected a baby that was close to perfect - and that's not what happened.  It's a loss, no matter how much you love the child you brought home.  It was a loss of that "fairy tale" family that we all hope for.  It does not make you a bad person - I promise you - to feel grief about this.  I truly think it's a tunnel you have to crawl through to be the best parent for this child.  Holding it in - just as holding anything in - breeds future resentment.  Get it out early - and often - so you can let it go.

It's okay to have a huge pity party - to feel very sorry for yourself - to even feel worried about "what others may think" - it's all very normal.  But when you're done, do me a favor.  When you've gotten it all out and you've wiped your eyes and pulled your shoulders back... walk back to that isolette, that crib, that bed where your child lays.  Watch his chest rise and fall and try to match it with your breaths.  It will connect you two.  And while you do, remember this story...

I was once you.  I had wanted a baby my whole life and had every perfect detail planned out.  Then Gavin came along.  I sat in the NICU for 30 days, barely leaving his side.  I felt like I was to blame - that Gavin didn't deserve me.  I even wondered at one point if Gavin and Ed would be better off alone.  I loved this little baby so much - but I was so disappointed that there was something wrong.  We didn't even know what that something was... but I knew it wasn't good.  

We brought him home and even though I had years of experience with babies, Gavin was like no baby I had ever met.  Suddenly I was a total rookie with my very own child.  And just when I felt like I was starting to get into a rhythm with him, he got sick.  Very sick.  After two weeks in a local hospital, they told us he was going downhill... and fast.  He needed to be transferred to a larger children's hospital an hour away - they just couldn't help him there anymore.  I watched my helpless child get loaded into an isolette and put into the back of an ambulance.  I could see his flailing arms through the glass as I drove behind them the whole way.  I started off the trip sobbing behind the wheel.  How could this be happening?  Why is this happening to us??  I was totally defeated.

But something came over me in the car that night.  Grace?  Mercy?  An angel?  I don't know.  But suddenly I realized that it was, indeed, written this way.  This was now our story to tell.  This was our new world.  I had to accept that my fantasy of "motherhood" was just that - a fantasy.  Gavin was given to me innocent and pure and wanting me to love him just as he is.  If I tried to attach all of my expectations to his spirit, I would crush it.  He needed me to just be his Mommy... and meet him where he was.  And from there we would figure it out together.  We'd carve out a journey that is solely ours... no one else's.  

I started "blogging" then, quite by accident.  I wrote on a public website so friends and family wouldn't call us for updates.  Honestly, it was hard to explain over and over all the things that were "wrong" with our baby - especially when we didn't even understand a lot of it.  At night I would type updates about his condition.  And soon I was typing about my condition.  And before I knew it, I was spilling my guts, baring my soul.  If I could have typed my tears onto the page, I would have flooded peoples computers.  It was the best thing I did for myself.  And it was the single best thing I could have done for Gavin.  Writing made me feel less alone.  Soon I, the new and inexperienced Mom in this strange new world, started getting emails from people that understood what we were going through.  It empowered me - which, in turn, empowered Gavin.  People came out of the woodwork to help me, to console me, to give me wonderful advice.  Being a special needs parent can be very isolating... but only if you let it.  Writing is what works for me.  If you're not social (which I'm really not.  and, yes - that's really true!), the internet is the easiest place to network with other parents.

We are never promised anything in life.  We could plan the perfect wedding... pray for the perfect spouse... shop for the perfect home... and plan for the perfect family.  Nothing usually works out exactly as we planned.  I don't want you to think everything is sunshine and roses at my house - it isn't. I have days when I feel sorry for myself still.  But they are fewer and fewer as the story goes on.  And I'm living quite a page turner, I have to say.

Whatever the diagnosis is - it doesn't really matter.  You'll put one foot in front of the other and soon you will be fluent... and helping others just as others will help you.  It may seem like it will never be easy - it will never get better - you'll never be happy again.  I promise you, none of that has to be true.

So how do I cope?  I see our life - the one we didn't plan for - as an adventure.  Every new twist is a challenge - a new way to grow.  Every disappointing turn reveals another life lesson.  Gavin's disabilities may have felt like the worst news of my life.  But Gavin's abilities have become the greatest news of all of our lives.  Sometimes - or a lot of the time if you are me! - life throws us curve balls and we find ourselves lost in an unfamiliar place.  But that can be the best place to be.  You're forced to throw away what you thought was the "guide book" for your life.  With each twist and turn, we write our own guide book... our own life story.  It's up to us if we write ourselves as the tragic figures... or the heroes.  

So, dear you, what character do you want to play?  It can change the course of your life... and your child's life, too.

With every good wish as you write your own page turner,

me.