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.