The Unopened Envelope...

Just some advanced warning:  This blog post is very important to me.  It's also very long.  I'd apologize for it's lengthiness, but it's just too important to me to share so I won't.  Apologize, I mean.  You might want to grab a snack and DVR your favorite show.

To say I was excited about Gavin going to Kindergarten would be the understatement of the century.

In January, I met with people from the district for his transition meeting.  I wrote about my intentions - my prepared speech to try to talk them into giving me what I wanted for Gavin - and how I brought Gavin (dressed in his Superhero shirt, of course) to the meeting with me - in THIS blog post.  That meeting turned out better than I ever expected.  

In March, I wrote about fielding calls from therapists and a psychologist that would perform all of Gavin's formal evaluations.  All of them would compile their reports and hand them in to the psychologist (who had never met Gavin).  The Psychologist would be the one to make the formal recommendations.  In that post, I wrote:

"...fielding phone calls from therapists, most of whom I've never met, that are setting up evaluations with Gavin for his Kindergarten transition.  I love phone calls from people we've yet to meet that want to talk about Gavin.  Love them.  This means I can ramble on and on and wow them with one story after another about our superhero.  I don't mean to ramble... and I can't help it if they are wowed... it's just me relaying information about Gavin's life.  But, I do have one ulterior motive.  I want them to feel invested in him.  I want them to get excited to meet him.  I want them to also feel that they want the best for him... and to set him up for success.  The truth is, Gavin does have an unusual and inspiring life story already - and everyone that has been put in his path over the last five years has been touched by his journey.  I feel so lucky to be his Mom.  And all the busywork and paperwork and phone calls and insurance crap and all of it... it's worth it.  Compared to the work that he puts in every single day?  It's nothing."

I will never forget the phone call with the psychologist.  She called to introduce herself, ask if there was anything I wanted to tell her before she went to Gavin's classroom to do her evaluation... and to see if I had any questions.  We were on the phone for quite a while - I told her story after story, hoping to impress upon her how unique Gavin was.  I wanted her to feel excited about meeting him.  She was so gracious and was so invested in our conversation.  I remember hanging up the phone and staring at Sara.  She asked "Did it go well?"  I answered, "It will now!  She totally gets me.  Gets Gavin.  This is going to be an amazing transition and Kindergarten year."

I know that would have been true.

I couldn't wait for her final evaluation to arrive in the mail.  I was so excited for him to start at the Kindergarten Center - a wonderful school where the teachers and the Principal and other support staff already knew him.  His current classroom is in the school so they would cheer for him as he practiced walking in the hallways.  They loved Gavin there.  So much so that many of them - including the Principal - attended his services.  I was so touched.  And that psychologist?  The one I had only talked to on the phone and who met Gavin only once?  She came to the funeral, too.  I was so, so moved by that.  

All I ever wanted was for people to see him.  I mean really, really see him.  And they did.

On April 15, 2013, Ed and I came home from the hospital without Gavin.  There, on the kitchen island, was the envelope containing his formal evaluation by the Psychologist.  To this day, it remains unopened.  Maybe I will never open it.  It's just too painful for me.

Being Gavin's advocate was my greatest joy - and my proudest accomplishment in life.  I want you to read a blog post that I wrote about this very subject.  I'm literally going to copy it here instead of linking it - because I just don't want you to skip it.  Especially if you or someone you know loves someone who has special needs... teaches those with special needs... is someone with special needs... parents someone with special needs... you get the idea.  But if you don't fit the above criteria, I hope you still read it.

To Whom It May Concern,

Are you someone who works in the school district? Any school district anywhere? Do you help place special needs children in appropriate classrooms and work on getting them the help that they need? Are you a special education teacher or therapist or psychologist in the school system that deals with children like mine? Have you sat in on transition meetings with parents who need to send their special needs child to school for the very first time? Have any of them cried in that transition meeting, like I did today? Well...if any of the above descriptions fit you - I'd like to tell you a little story. It may help explain me...and the hundreds of thousands of other Moms (or Dads!) like me. Sit back, relax...

The day Gavin was born started off as the happiest day of my life. The C-Section was fast and furious only because my blood pressure went sky high and he had to be delivered immediately. There was no reason to believe that Gavin had any issues. But then came the silence. Never a good sign. Gavin needed assistance breathing and was whisked away to the NICU.

It was there that we lived for thirty days. The first two weeks I must have yelled at Ed a hundred times to and from the hospital - WATCH THE BUMPS! - as I held my C-Section incision. Nothing would keep us from seeing Gavin and spending our day learning everything we could about his medical needs. We tried hard to just be present for Gavin - creating a homey atmosphere, bringing in clothes that were his (even though he was swimming in them) and toys and taking as many photos as we could.

We brought him home and just that quickly we were back at the hospital...where we learned he had RSV, Botulism, and permanent, sensorineural hearing loss. I lived next to his crib for the next eight weeks in that hospital...pumping breast milk that he could barely eat. He was so, so sick...practically paralyzed. There were times it was touch and go.

I brought in the crib mobile, blankets, rattles and stuffed toys. All baby shower gifts that I was determined he would enjoy - wherever he was.

We brought him home...again...for good. Thank God. We learned more than we ever wanted to know about managing hearing aids...

...managing feeding tubes and pumps...

...working with him an hour a day with vision exercises while we patched his weak eye after he was diagnosed with Ptosis and Amblyopia.

Watch the following video to get just a glimpse of what he went through in his first year alone. More than most would go through in a lifetime, that's for sure:

Make a video - it's fun, easy and free!
www.onetruemedia.com

Gavin and I have been through it all together. Hospitalizations...colic...aspiration issues where he'd often turn blue and need me to suction his airway...therapies...doctor visits...sleep issues...nebulizers...feeding issues...I could go on and on and on. The point being - we have a very tight, very special, unbreakable bond. I'm sure that's easy to understand.

So today, as I sat in your office and told you my hopes and dreams for Gavin's education, I got choked up. When you told me that I could, indeed, keep him home and in the "pre-school program" for another year - just exactly like he is now - I was relieved. When we talked more about him attending Kindergarten with a one on one aide that would be hired by the school district, I got teary again. I'm sure you must have thought I was one of those...what are they called? A helicopter Mom.

Well, I suppose I am.

When you've been through as much as I have with my first born child - it is hard to let go. I know every inch of him from his head to his cute little toes. I can anticipate his physical movements before they happen.  When I am stressed - he is stressed. When he is hurting - I hurt, too. I know just the right song to get him to focus. I have the same relationship with Gavin's brother. But there's a difference.

Gavin can't walk. Gavin can't talk. Gavin is more vulnerable. The thought of sending this sweet, vulnerable child out into the world without me...

...well, it's just hard to take.

Every day I hear or read about people doing unspeakable things to children. It's a little known fact, but I was one of those children once. A music teacher - I was only 12. So I'm overly cautious. Overprotective. If Gavin is in school - or on a bus - or with a personal aide hired by the school district, I don't feel any less cautious. I feel worse. Gavin can't talk. He can't run. Do you see what I'm saying? It may sound extreme - but if, like me, you once met a wolf in sheep's clothing then you'd understand.

Why am I telling you all of this? I guess because I want all of you to know that every special needs child...and every special needs child's parent...has a story. They aren't just a case number...or a last name on a file. They are people with real fears and real anxiety and hopes and dreams for the future. They hope and pray that they meet up with administrators and therapists and teachers and school districts that will see them. I mean really see them. That will take the time to get to know them. And maybe, just maybe, share the dream that the family has for their child. And if they act a little wacky...a little 'helicopter-y'...a little overprotective - it's likely that they have traveled such a long and heart wrenching journey with this child. It's hard to just turn that off as we turn them over to you.

What am I going to do about Gavin and this school thing I'm facing? Well, I haven't quite decided yet. In the meantime, we'll continue to dance our way through our happy life at home. And I'll continue to marvel at this little boy who has defied so many odds - and has overcome so many obstacles.

Thank you, so much, for your time.

Sincerely,

The Superhero's Mom

Today, as I picked up Brian from preschool, I saw the psychologist.  She was there to do an evaluation and waited around to see me at pick up time.  We chatted for a little bit.  I told her about the unopened envelope.  She understood my fear.  And then she handed me a card.  At home, with Brian tucked in his brother's bed for a rest, I opened her letter.  She said so many beautiful (and way too complimentary to even be believed) things and I sat there reading with tears streaming down my face.  It was incredible to me that this wonderful woman, who we really had such a brief encounter with, would have taken the time to write to me.  But... that was Gavin's doing.  He has a way of making a profound effect on people.  There were two parts of her letter, though, that meant so much to me.  They especially meant so much to me because she is a school psychologist.  She said that she wanted to commend us on how we were handling things with Brian.  I felt relief.  We really are just surviving here - and trying hard to balance his needs with our grief and it can get rather tricky.  Just her saying that lifted a burden off of me.  But the one thing I keep thinking about from her letter was her telling me that I was a good advocate for my children.  If somebody told me tomorrow that they wanted to hand me the Nobel Peace Prize - or the Key to the City - or a million dollars - (okay, just kidding.  I would never get the Key to the City.) - it wouldn't mean as much as those words.  Being an advocate - especially for Gavin - was my identity and the thing I took such pride in.  That comment meant so, so much to me.

This morning I took a tour of a potential new preschool for Brian this Fall.  I was led down the little hallway to peek into their four classrooms.  The first classroom... butterflies all over the walls.  The second... butterflies hanging from the ceiling.  The third... butterflies on sticks.  The fourth... a clothesline with hanging butterflies.  And then we turned around and walked back down the hall - giving me a view of their little "prayer garden" through a wall of windows.  What was out there?  Hydrangeas... just like the ones we chose for Gavin's funeral... the ones that we will hopefully be planting soon in a memorial garden in our yard.

Looks like Gavin is the new advocate in the house.  He was clearly sending me a sign that this was the right school for his little brother.

Soon I will be announcing a special project I am planning and I can't wait to share it with all of you.  It's a way that Gavin can continue to help his classmates, friends and kids like him that have needs that even the best advocate can't fill.  This little project means the world to me and as soon as the details are finalized, I'll share it and invite you to be a part of it.

Gavin is continuing to change the world.  It is still my complete and total honor to be his Mother.  I miss him profoundly.

Project Hope...

I want to tell you a little story.

The morning of my 43rd birthday, April 14th, I woke up in bed next to Gavin and was overcome with emotion.  I knew that this was the day that we would be told that Gavin was gone. As I held his hand and stared into his beautiful face... I was just overcome with an overwhelming feeling.

That feeling has since been confirmed.  Multiple times.

This is Project Hope:

(I thought I had it in focus - but it was hard to tell through my tears.  You get the idea, though)

The day we got home from the hospital, April 15th, Ed and I took a home test and... sure enough... positive.  We stood there for what seemed like an hour.  Shocked.  Stunned.  Scared.  Overwhelmed.  This was definitely a surprise.

It is still very early.  This morning we saw the heartbeat and I felt like I was able to breathe again.  But with 12 miscarriages and a stillbirth behind us, we are cautiously optimistic.  I am trying not to think too much that "this baby was sent from Heaven!" - because it would be a devastating loss if things didn't work out.  This is also an impossible project for me to hide.

But the biggest reason I am sharing this news is because of all of you.  There is so much positive energy coming our way from each and every one of you.  There are so many heartfelt and steadfast prayers coming our way, too, and we need them.  We need them now more than ever.

Welcome to the rollercoaster that is my life.  If you're planning on sticking around, I suggest that you buckle up.

Please helps us HOPE this baby born next December.

Three Weeks...

Dear Gavin,

Today has been three weeks - exactly - since you died.  And today, in some ways, small parts of me are dying, too.

I feel like I can't take a deep breath.  It makes me think of you.  Were you struggling to try to breathe in that emergency room?  Were you trying to breathe with the ventilator forcing air into your lungs?  Am I somehow feeling what you were feeling?  It would somehow bring me comfort if I knew that were true.

I feel like my chest is tight and constricted.  It makes me think of you.  Did you feel them pushing and pushing on your sweet little chest?  Did you feel any pain, Gavin?  I can't bear the thought of you lying there aware - like you were trapped in a lifeless body but felt everything.  It's more than I can take.

I feel so tired.  I could go to bed right now, at 1pm, and stay in bed until tomorrow.  It makes me think of you.  Were you tired?  Did you want to go home before my birthday?  Were you holding on for us even though you were tired of fighting?  It would be like you.  You were always so generous.

The tears can't stop today.  I want to go back.  I want to rewrite this part of your life with a very different ending.  The ending where this never happened.  I just miss you so, so much.  Everything about you.  Did you cry inside?  Did you try to tell us that you didn't want to go?  Do you miss us, Gavin?

I am trying my very best to be available and present to your brother.  He is my biggest priority - and Daddy's, too.  I know you would want that.  He talks about you all the time.  He is still sleeping in your bed (and even wants it zipped up so he can sleep like you did!)... 

...he plays on your iPad... and he sings your favorite songs.  Today, we sat in bed and read books.  One book was about a little girl who climbs with her Dad to the top of a lighthouse.  Her Grandfather - and his father - loved that lighthouse and he had just died.  High above the ocean, she asked her Dad, "Can Grandpa hear me?" and she yelled into the sky GRANDPA!!!  They waited a long time until her Dad finally said, "He's not going to answer." I wanted to throw that book out the window.  I wanted to go back four pages and make up a better ending.

Instead, Brian and I flung open the two windows in the room - windows that are just low enough so you could stick your head right into the screen.  Out into the back yard we took turns yelling "HI GAVIN!!"  "I LOVE YOU, GAVIN!!"  "I MISS YOU, GAVIN!!!"  and finally, after we exhausted ourselves (and possibly concerned the neighbors), we yelled "BYE GAVIN!!!"

I closed the windows and heard, "Mama?"

"Yes?"

"I know Gavin heard us.  The birds were chirping a lot a lot a lot.  Gavin told the birds to do that for us.  Heaven is everywhere."

I felt relief.  I want him to know that Heaven isn't some place above the clouds that is completely inaccessible.  I WANT him to know... to believe... that Heaven is everywhere.  That wherever he is, he can talk to you and you will hear him.  And sometimes, in some way, he'll get a response.  I want him to know that he doesn't need to shout from the windows into the sky (although there was something cathartic about that, I must admit) in order for you to hear him.  He can talk to you in his mind - with his heart - and you will be there.  You will always be by his side.  Forever.

Three weeks passed by so quickly.  Too quickly.  It feels like an hour ago that you and I shared those special moments in bed together the morning of my birthday.  

That night, as we heard "Time of death..." echo in the room, part of me died with you.  I think that's normal for any Mother who has their child ripped from them - whatever their age.  A part of you had always been inside of me.  And a part of me had always been inside you.  My life, my heart, my soul... 

...nothing will ever be the same without you, Gavin.

Love,

Mommy.

Reflections of Anger and Love...

Today I'm feeling a little mad.

It's easy to direct this anger at things that don't really matter.

Like a few days after Gavin's funeral we realized that Brian's fish, "Fishie," had a bulging eye.  The pet store told us he had a 50/50 chance of either losing his eye... or dying.  Yes, I realize the cruel similarities to Gavin's life... and yes, I immediately thought, "Brian's fish dying is the last thing he needs right now!"... and yes, I am doing everything possible to save his eye - or at least his life... and yes, I immediately bought a "stunt Fishie" which is currently living in our bedroom in case the real Fishie doesn't make it.  But I was pretty freaking mad.  I don't need this.  Seriously.

Like a week ago when I got an email from a woman asking if I'd like her to write a guest post on my blog so she can offer "travel tips" to my readers and offer her services.  Or the woman who posted a "work at home" business on my Facebook page and, when I contacted her told me "It's a free country, bitch."  These people make me angry - only looking at high numbers and making impersonal business decisions at my emotional expense.  It makes me mad.  It makes me feel used.  And it hurts my feelings.

Like right now.  I'm sitting at the car dealership.  Since the funeral, I've been driving around with my dashboard lit... probably running on fumes.  It was the last thing on my mind.  I hate being here in the waiting room while kids play with the toys in the corner and a girl is chatting happily on the phone and people are laughing at the shared TV on the wall.  I want to stand up and scream - STOP!!!!!!  My little boy is dead!!!!!!!  STOP IT!!!!!!!  

Like back in March of 2012, when Gavin had his first febrile seizure (and only seizure until this recent one).  It was the scariest experience of our lives at that time.  Based on that, I created Emergency Kits for each child with instructions on what to do in case Gavin had another seizure and we weren't home.  It contained his liquid Diastat and I trained everyone who would watch him how to use it.  I was proud of those kits - and it made me feel better if we were to ever have an emergency in the home again.  But then I found this comment under that post:  

Holy cow! Can we say overboard????? Gavin had a febrile seizure from the high fevers. You just need to chill and move forward. There is NO way I could parent like you. My kids would have no life or independence.

That comment popped into my memory as I drove to the car dealership alone this morning.  I started to cry... and then I got mad.  I wish I knew who made this comment.  I'd love to call her - or knock on her door and say, "Hi.  Remember me?  The Mom who went overboard after her son's first febrile seizure? Yeah... well, he had another one.  And he died."  And the rest of what I would WANT to say would stay safely in my mouth.  Maybe.

I'm just mad.

But I know - very well - that it's misguided.  I know - very well - that it's a natural part of grief.  I know - very well - that it's healthy when it's healthy... and unhealthy when it's not.

I know that it won't bring Gavin back.  I get that.  But I'm still feeling mad.  I didn't feel mad yesterday. I may not feel mad tomorrow.  I'm not mad at Ed or Brian or you.  (Unless you're the lady I interacted with.)  I'm not mad at God.  And I'm not mad at me.  I'm just mad.

I think, maybe, I'm feeling pissed because I worked so hard... I was so overprotective (and proud of it)... and I tried everything to always ensure that Gavin was happy, comfortable, healthy and protected.  Some things were little - like never allowing scents in our home, including detergent, so he wouldn't get a skin rash.  Some things were important - like not allowing people to wear shoes in our house and asking everyone to wash their hands.  I considered it to be disrespectful to walk around in dirty, germy shoes on the floor where Gavin spent most of his time crawling around.  And I was proud that he (and Brian) were rarely sick.  Neither of them had ear infections until just this year.  And some things were big - like never leaving his side during hospitalizations and getting very involved in his medical care... down to knowing that everyone would know what to do in case of another seizure.

But in the end, I couldn't help him.  I was relegated to a corner of a room as I watched in horror.  In that moment it didn't matter about detergent or emergency kits or washed hands or how "comfortable" he was.  I was useless in those moments.  And I think that is what makes me the maddest.

Today I am mad.  I don't need you to talk me out of being mad.  I don't need you to worry that I'm mad.  I'm just writing that I'm mad - right now - and that's okay.  It just is.....

It just is.

Today when I look in the mirror, I see someone who is mad.  But as I obsessively pour over the thousands of photos I've taken of Gavin... and the stack of "selfies" that I took so I would get pictures of us together... I see reflections of love.  

And I'm definitely not mad about that.

Looking For My Sister...

"I'm looking for someone that will be like my sister,"  I said in my typical un-conventional interview.  Sara came prepared with a resume - a real, impressive resume.  Yes, I was impressed (not a single typo!) - but I didn't care about what she had done, where she went to school or how many babysitting jobs she had in the past.  

I just wanted to choose someone that I could spend my days with.  That I would like.  Finding someone that would bond with Gavin and Brian was never a challenge... they never met anyone they didn't like. And vice versa.

As it turns out, I found more than my sister.  Sara quickly became part of our family.  And I truly see her like a daughter.  It was always seamless around here.  We practically finished each other's sentences.  

And when Gavin lay dying in the hospital, she chose her own sentences to explain to Brian what was happening.  She answered his questions.  She kept her composure.  She handled things just as I would have and I'll never, ever forget that incredible gift.

Today was Sara's last official day with us.  She had been planning to leave to start an Internship at DuPont (Gavin's hospital!) in their Public Health division.  But she will be with us forever - an official Leong.  Our wish for her is that she'll walk through the rest of her days remembering the difference she made in our home.  And that Gavin will always be with her.

We love you, Sara!

Vulnerable...

It's hard to describe what it feels like to be me right now.  Although that's just who I am.  Me.  I'm writing the same... I'm expressing myself the same... the only thing that's different is that my heart feels like it was ripped out.

On April 10th, standing helpless in the emergency room watching a large crowd of people - one on top of Gavin - trying to keep him alive... it was an out of body experience.  I am used to being in control of Gavin and his care.  I wanted to keep shouting things like, "Watch his left eye!"  "Can someone sing Twinkle Twinkle Little Star?!?"  "He's going to get a rash from your detergent ridden hospital sheet!"  Totally ridiculous thoughts at the moment - but I was desperate.  I felt so helpless.  So useless.  So vulnerable.  Just an hour before we were giggling at home.  What in the HELL was happening?

They told me I couldn't go on the helicopter with him - the fifteen minute flight from Pennsylvania to Delaware.  I was sure it was because they thought he would die mid-flight and they didn't want a grief stricken Mother freaking out and distracting the pilot taking the entire chopper down.  So sure that I pulled one of the flight team aside in the hallway outside the trauma room Gavin was in.  "Please,"  I begged him... holding his hands in mine, "Please promise me you won't let him die afraid.  Please sing to him and tell him his Mommy and Daddy love him.  Please."  He stared me straight in the eye and said, "I am NOT letting him die."  I was trusting these strangers with my little boy - possibly with his last moments on this earth.  I was devastated.  And as I left Gavin's room - Ed's hand in mine - I've never felt so vulnerable.

That evening, settled into his room at DuPont - his second home - Ed and I stood in the corner two more times.  Two more times that night Gavin coded and had to be brought back to life.  A nurse we will never forget named Ben stood with us giving us a play by play.  He told us what every beep and every number meant.  When doctors would call out instructions or orders, he would translate.  He was our bridge between that lonely corner of the room and Gavin's side.  I hate not being there... being involved.  Relying on others to explain what's happening as you are watching your child possibly die for the first... second... or third time... is the worst feeling.

The next day, I knew.  I didn't want to know.  I felt like I was giving up on Gavin - the boy I fought for every second of every day of his life - by even thinking it.  But as I looked at his eyes, pupils different sizes... sometimes traveling different directions... I knew that my gorgeous miracle child was going to die.  I kept that to myself.  But as heels clicked in and out of our room all day and all night... as monitors beeped and alarmed... as I laid next to his warm body and watched his chest mechanically rise and fall... I never felt so vulnerable.  This child I birthed from my body - who's life is so mixed up in mine - was gone.  Alone in my thoughts, I felt a bit of peace picturing his spirit filling up the room.  I knew he was allowing us time - hanging on for us so we wouldn't fall too hard and fast.  Gavin has always been so, so generous.

Smiling.  Crying.  Eating.  Sleeping.  Laughing.  Showering. Caring about doing anything while your child lay dying in a hospital bed feels wrong and right and confusing and bad and good.  If I had a moment of laughter, I felt bad.  What if someone saw me laughing... might they think I don't care?  If I slept, how dare I?  If I smiled too much would I not appear "enough" like a grieving mother?  It is the strangest experience to be so, deeply involved 24/7 and be "on" for nurses and doctors and visitors and clergy and... each other.  If anyone came to visit, we comforted them.  For me, it was easiest to go into my "zone" of wanting to know everything about what was going on medically - just as I have so many times before with Gavin.  The entire hospital experience - being in a fishbowl - is a very vulnerable feeling.

My heart has never been so bare as it was preparing to leave his body.  I've never left Gavin.  I once lived at DuPont for months, refusing to leave his bedside... sleeping on a "civil war-era metal cot" every night.  When he would have any procedures done - especially if they were painful - I insisted that I always be there.  I wanted him to always see my eyes - know that I was there.  I would put my face right above his and sing to him - trying to calm him and comfort his fears.  I knew the day was coming that I would have to leave his body at that hospital and my heart was just laid bare.  No one could ever know how that felt for me... after all that Gavin and I endured together as a team.  No one.

Sara and I went to the Mall one evening - my LEAST favorite place to be - to shop for my funeral clothes.  As the salesperson brought us to a fitting room I wanted to blurt out, "My son is dead."  When I paid for my blue dress I wanted to tell her, "It had to be blue - you know, for my son's funeral.  My son died.  He was 5 1/2."  I felt phony walking around a mall - caring about clothing - so, incredibly vulnerable as people passed us in blurs of color living their lives unaware.  I didn't want ANYONE to be unaware of Gavin.  I still don't.

Standing at the front of church, greeting friend after family after stranger after friend - 800+ in total - I felt naked.  And like a fraud.  "You're so strong!" I heard over and over.  I wanted to say, you must not have heard about my 'heated conversation' with God last night.  "You're handling this with such unbelievable grace!" was another common theme.  Rest assured, most true 'graceful' people don't shout obscenities as they throw cardboard boxes against their garage walls.  At least I'm pretty sure.  To appear to be one thing - and feel like a completely different thing - is a very vulnerable feeling.

Since April 10th, the outpouring of emails and comments and Facebook posts has been overwhelming. I feel confused and honored and grateful and nervous about all of it.  I've always written just for me - it's my outlet, my therapy, my everything.  People have been accidentally helped along the way and I'm glad for that.  I've never set out to be anyone different or set myself up as anything other than a very flawed Mom who writes about her life with her kids.  As a people pleaser, I feel compelled to read every note and try to respond to everyone.  Part of me feels happy to do that - I love to help.  I really do.  But part of me also needs you to picture this:  Picture a woman lying on the floor with her heart hanging out - blood everywhere.  It would probably not be the best time to ask her too many questions or ask her for advice or wait for an answer or expect to get logical direction.  Actually, it's probably wise to never ask me for directions... not my strong area.  Or recipes.  With so many people reaching out to me - I feel panicky.  I am sure that I will miss someone, hurt someone's feelings, overlook something, forget to thank someone, forget that someone did something at all... it's overwhelming.

To have so many people's eyes on me now is a ridiculously vulnerable feeling.  Strangely, seeing my life written out on Momastery yesterday did NOT make me feel vulnerable.  It actually made me feel free.  Those closest to me knew all of this - they lived through a lot of it.  To get over a hundred emails with beautiful and personal and heart wrenching and "me too" stories solidified my feeling that it was the right thing to do.  However, to get emails and comments from people that seemed to put me up on a box (not even a pedestal) saying I was 'inspiring' or they had such 'respect' for my way of looking at things... I wasn't sure about that.  I had to call my Mom and say, "Do these people realize that this is the same person that was involuntarily committed 26 years ago?"  It's hard to reconcile.

Now that life is moving on so rudely... and spring is springing outside our windows... it is getting tougher.  I have to muster up the courage to go to Gavin's school... to see his cubby with all of his things... to hug and thank everyone who has meant so much to him and to us.  I have to take on the challenge of gardening - finding the perfect spot for Gavin's funeral hydrangea plants, a butterfly bush and a gorgeous stone bench which was gifted to us by Ed's work colleagues.  It is inscribed with "Those we have held in our arms for a little while we hold in our hearts forever."  This will be a daunting and emotional task. I need to tackle the piles of cards and gifts and pictures and memories that are forming a mountain on my dining room table and try to make sense of it all.

How do you make sense of anything that doesn't make sense to you?

There are big changes around the corner, too.  Tomorrow is our beloved Miss Sara's last day working here which will be a tough transition for all of us.  She's not leaving us forever - she is deeply ingrained in the heartbeat of this family.  As a matter of fact, we have decided to get the hell out of dodge as part of our thanks to her.  At the end of May, Ed and I are whisking Brian and Miss Sara away for a trip to Disney World for four days.  Ed and I were counting the days until we would take Gavin and Brian for their first Disney Trip.  And we knew that Gavin would enjoy it more than all of us - the rides, the music, the energy.  We will be bringing him with us, in spirit, but it does break our heart, too.  We're using points, miles, and the help of my friend Danielle who is a "Magical Memory Planner" for Disney.  She's planning out our whole trip.  We pretty much have to just show up.  (This is, remarkably, a free service that Disney offers.  Check out their Facebook page and ask for Danielle Wann if you're planning a Disney trip!  She is a total 'insider'!)  

I will also need to figure out how to fill my time.  Time that was often wrapped up in research, planning, fighting, phone calls, therapy... and love.  It was all done with so much love for this child that was my life.  He really was my life.  The thought of just going on without him as part of my every day is such a terrible feeling.

If I were to write all of this down - a list of feelings - perhaps the one at the top of the list would be "Why."  The title of the list would be "Things that make me feel vulnerable right now."  I just need to know why.  On Gavin's death certificate it reads:

Enter the chain of events - diseases, injuries, or complications - that directly caused the death:

Cardiopulmonary arrest
Cardiac Arrhythmia 
Febrile Seizure
Undiagnosed Genetic Condition

Enter other significant conditions contributing to death but not resulting in the underlying cause given above:
Undiagnosed Genetic Syndrome

Were autopsy Findings available to complete the cause of death?  
No.

No.

We asked them to take and freeze a sample of Gavin's DNA.  When there are advancements in genetic testing (he's already had every test offered) maybe we will finally crack the Gavin code.  And maybe it will spare another family the heartbreak of a sudden and unexpected death such as this.  And I'm still holding out hope that the final results from the autopsy (which can still take weeks to come back) will shed some light onto why this happened.  The day before, I was racing for the camera because Gavin was "dancing" independently for the first time ever.

And that next evening, I knew we were losing him.

I'm not sure I will ever understand why.

But I do know - and have known since his birth - that Gavin is a very special soul.  He was, without a doubt, sent here on a mission.  And based on what I've seen and heard - and the amount of people and lives that have been touched and changed by his story... he more than accomplished his holy work.

My MamaStory...

This post was originally published on "Momastery" on May 1, 2013.  You can see the original post and all of the comments on Glennon Melton's beautiful blog.  Thank you for the outpouring of love and support and "me toos" I received after this was published.  As you can imagine, it was a big decision to write - and make public.  It turned out better than I ever expected... proving to me, once again, that fears and expectations are often far worse than reality.
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Growing up as the youngest of five, I often got lost in the crowd.  

Born with a quiet voice and a sensitive heart, I could barely get a word in at the dinner table and often got my feelings hurt.  In elementary school and even high school, I stayed a quiet observer.  I didn’t fit in any group, really, and most times was okay with that.  I hated watching others get bullied and would often feel compelled to reach out to them.  I think I was born a natural caretaker... but that came with a heavy price.  I learned to take care of everyone but me.

After suffering sexual abuse as an adolescent at the hands of a teacher, I went down a  road of self destruction.  This quiet, tender hearted girl with a big, loving family kept every dark secret inside and tried to slowly self destruct.  My journey included an eating disorder all through high school that nearly killed me... a suicide attempt that nearly broke my parents hearts into a million little pieces... multiple hospitalizations in facilities with the kind of doctors who try to talk you well and medicate you silent... relationships that were wrong on every level - but that conveniently put me in the role of caretaker so I could feel normal while I helped him with his problems... a rape while I was on an overnight as a flight attendant... and alcoholism, which was how I chose to cope afterwards.  I drank for close to five years - and nothing could have made me stop.  Not even my big, loving, accepting family.  But one day I was given a choice - marriage or vodka.  Lucky for me, I had a choice.  Lucky for my family, I chose wisely.  I knew that I always wanted to be married and have children.  And I wanted to do it right.

One would think, in a perfect world, that the story would go on to have a happy ending after this much turmoil and heartache.

Well, that would depend on your outlook, I suppose.

We tried and tried for a baby and found ourselves at the mercy of an infertility specialist.  Soon, with a little help, we were pregnant with twins!  Before we could find out if they were boys or girls, we lost them one by one.  Imagine our surprise a few months later when we naturally conceived - twins AGAIN!!  I held my breath at every ultrasound... until I exhaled into a deep wail when one heart stopped.  I thought for sure the other baby was not far behind - that he wouldn’t survive without his sibling.  I underestimated this baby.  He not only survived a very difficult pregnancy... but he survived a very traumatic birth.  This child is our son, Gavin.  Born with severely low tone, feeding issues and “dysmorphic features” - we did not get a lot of encouraging predictions for his future.  Six days before his first birthday we were told he has Cerebral Palsy.  One of his doctors told me that he didn’t expect that Gavin would ever be able to sit up on his own - his tone was so, devastatingly low and his head was so big and heavy.  This same doctor loves to tell that story every time he sees Gavin - especially now, at 5 1/2 years old, when he confidently walks into the exam room.  I named my blog “Chasing Rainbows” as a testament to how Gavin has defied the odds that were stacked against him.  Don’t ever let anyone tell you that you can’t chase rainbows.  And if they do, remember my sweet little boy.  Along with the Cerebral Palsy, Gavin has an undiagnosed genetic syndrome and will likely need our care his entire life.  

People definitely raised their eyebrows when we were pregnant with our second child.  Gavin was only six months - had just come home after a three month hospital stay for RSV and Botulism - and he was on a feeding tube and oxygen.  After a shaky start (doctors suggested I abort my pregnancy - that the child I was carrying would never make it), Brian was born on a beautiful December day.  Having our boys so close together was the best thing we ever did.  Brian is Gavin’s best therapist... and some days his best friend.  It has been such a joy watching them develop side by side. Unfortunately, I was stricken with Rheumatoid Arthritis shortly after his birth which has been rather difficult.

You would think we’d quit while we were ahead, but we still wanted a third baby for so many reasons.  We worried about Brian.  What if Gavin never talks?  Would Brian be lonely?  What if something happened to us?  That’s a heavy burden for one sibling to carry.  All of these fears and worries led us straight back to the infertility specialist.  It did not go well.  The end total to date - nine miscarriages and the traumatic stillbirth of our beautiful and perfect daughter, Darcy Claire.  She was born after five and a half days in the hospital attempting to deliver her body and arrived just hours before the calendar announced it to be “Mother’s Day” in 2010.

I have absolutely gone down the road of - “Seriously, God?”  And I’ve also gone down the road of - “There must be something wrong with me...something I did to deserve this.”  Why would so many difficult things keep happening to one person?  It doesn’t make sense!! 

Or does it...

I often say on my blog that when Gavin came along, he saved my life.  I want to explain to you why.  The obvious reason is because I was sober a little over a year when I got pregnant.  It definitely kept me on track!  And, after years and years of self absorption and self destruction, isn’t it ironic that I was handed a baby that required ALL of me?  Gavin saved me from myself.

But it was something that was said to me along the way - while I was knee deep in feeding tubes and therapies and serious medical issues with Gavin - that changed my entire outlook.  I had years and years (and years) of therapists - both good and bad (and really bad) that couldn’t bring me to this revelation.

What if you chose your life’s blueprint before you were born?  What if your soul sat with God before you arrived here on Earth and decided what your life should look like... what hardships you should endure... what lessons were the most important for you to learn... how your journey could help others on their journeys?  What if your life’s journey was actually mapped out - by you and God - for a higher purpose?

Just thinking about that changed the course of my life forever and gave me a new perspective when looking in the rear view mirror.  It took me from a place of “why do horrible things keep happening to me?!?!?”  (with a couple WTFs thrown in there) to a place of power.  If I chose to endure hard things in my lifetime - then I chose that for a higher purpose.  I can use all of my experiences for good - and stop using them to shame and punish myself.  I realized that all of these years I had been doing it wrong.  I thought I was taking care of everyone... but since I wasn’t taking care of me in the right way, I really wan’t helping anyone at all!

Glennon often describes herself as a “shameless truth teller.”  That is exactly what we all need to be.  When we let our secrets out - whatever they are - we shake off the shame that’s attached to it.  They say you are only as sick as the secrets you keep.  I was choosing to be sick for so many years.

So, I’m no longer embarrassed about my history.  I’m no longer shameful about the ways I chose to cope with the hand I was dealt.  In sharing my burdens, I hope to ease the burdens of others who might be keeping similar secrets.  But mostly, I see the higher purpose in all of this - to learn.  I have learned without a doubt that I can do hard things.  I have learned that in sharing ALL of myself, I can truly help others.  I have learned that openness leads to healing. I have learned that, for me, writing is my best therapy. (And lucky for me - that therapy is free!) People ask me all the time how I remain so positive amidst so much misfortune.  My answer is - it’s a choice.  I choose to believe that my life is unfolding exactly as it’s supposed to.  And I choose to be an avid student of all the lessons it is placing in my path.  My blog is my “MamaStory” and it’s an honor for me to be vulnerable and open when I know that it can touch someone who needs it.

But the most important part of my “MamaStory” are my sons.  My blog is my legacy to them.  I want them to know that their Mommy was a human being with flaws and tragedies and triumphs and hopefully a little bit of insight.  I want them to know that they can choose how they see their own lives.  That adversity can make them either bitter... or better.  That they won’t have to look far to “find their destiny” because their destiny lies right there in their life’s journey... just like I found my destiny in mine.

And just like you’ll find your destiny in yours.

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I wrote this guest post for Glennon and sent it to her on April 3rd - a little nervous as it revealed so much about my personal life experiences.  Eleven days later on my birthday, April 14th, my husband and I said goodbye to our precious son, Gavin.  He suddenly and inexplicably suffered three cardiac arrests after a seizure on April 10th and we were lucky enough to spend four days with him before he died.  During those days we slept with him, sang to him, loved on him and bathed him.  

An incredible Child Life specialist helped his younger brother, Brian, come in to say goodbye in a sweet way.

  Gavin was a helper and a healer - to us and to others - so it made perfect sense to us to donate his organs after his death.  Now, his story has made him a helper and a healer all over the world to so many who have been moved and inspired by his journey.  This little boy who never uttered a word is changing people.  Imagine that.

I thought about this post several times during those days - and drew on my own words for strength.  I delivered a eulogy to Gavin using some of the very words I wrote in this post.  "You truly can find hope and inspiration and important life lessons in your own lives... even when the path seems impossible to walk, like this one for us.  Gavin taught me that.  I'm just the messenger."

This little boy of mine saved my life.  And his story could profoundly change yours.