Wednesday, May 8, 2013

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:


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.



27 comments:

  1. I've only known your story for the past few weeks and I want you to know that even I, from a distance, can *see* your precious son for who he IS (not was). What an amazing little boy. I can understand why you feel so privileged to be his mom. The bond you share with him is totally unbreakable and the love between you will go on and on. Thanks for sharing your heart.

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  2. I look at these beautiful pics of Gavin and all I can think about is that he truley has the face of a little angel.

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  3. God bless you Kate! I am a Kindergarten teacher and pray every night for the children in my class and their families! Thank you for reminding me to remember how importan each child's back story is! Because we all have a story...

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  4. What a powerful, inspiring, SO true letter you wrote—I will share with teachers/parents alike. Kate, you know how Gavin continues to change lives? Well, you continue to advocate, and change lives as well. xo

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  5. I Am going to plant blue hydrangeas in honor of Gavin! You are an inspiration for another special needs Mom!!

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  6. Your story meant the world to me. My son is a special needs student and you hit the nail on the head with everything. I tear up reading your posts because I get it - especially where our identity is being our childs advocate. It is the hardest, yet most rewarding title ever. I have watched most of your videos and read most of your posts and please know that I "see" your baby boy. He was an angel here on Earth and he is your true angel now. My heart breaks for you. I will remember Gavin.

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  7. Once again reading your words has me in tears. The video of you two dancing really did me in! You speak so eloquently, and your love for your boys is so evident in all you do! Gavin Im sure is telling Darcy what a wonderful mom you were to him and telling her all about you and Brian is so lucky to have you here with him!

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  8. Again, you amaze me. When I read the part about finding the butterflies in the room, my first thought was "Gavin is telling you 'THIS IS IT!!'. It's amazing the signs they send and love they send from Heaven. :)

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  9. Kate - You took the words right out of my mouth. Gavin's story is not over, and he still needs you to be his advocate. I can't wait to hear what your project is. Your role will never end because you will always be Gavin's mommy, and I firmly believe his work here is not finished.

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  10. I just wanted to say that I pray for you everyday. I hope that I can be half the parent you are to your children. I feel a connection as my Nana who was my best friend, also loved blue hydrangea and butterflies. So now everytime I see a butterfly or blue hydrandgea, I will know that my Nana is in heaven and she is watching over your little angel.

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  11. Kate,

    As a school-based PT who is part of the Kindergarten transition team, thank you for writing this. I try so hard to consider all these things, and really think about what will fit this child best (even though sometimes, it is not the same as what the parent wants). I told a family recently, every child is loved by someone in the school. Different personalities mesh differently, but every child has someone who loves them at school. The mother thanked me for telling her that, as she is terrified at sending her non-verbal, non-ambulatory child off to kindergarten.

    One thing to remember through all of this. Gavin is a reflection of you and Ed. For as much power and impact as he had, and continues to have on this earth, it is really you, channeled through him. Gavin speaks for you and all of the strength and goodness that is inside YOU.

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  12. Beautiful. Can't find words....

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  13. You are amazing! You are truly an inspiration.

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  14. I got goosebumps reading about the preschool for Brian. So beautiful. Gavin is everywhere. And you? You are awesome. Always will be.

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  15. read your story and then went back to my fb page and as I am scrolling down my page, a friend had changed her pic and it was: A butterfly and a Hydranea. <3 Gavin

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  16. I completely understand. My son had a speech delay and we had to fight for services. I told everyone who would listen that it was my job as his mother, his advocate, to make sure that my son could start preschool and be able to communicate his needs. The thought of sending him without those skills was not an option. My heart hurt as I read your post about sending Gavin to school with an aide not of your choosing. God bless you as you continue to advocate for Gavin and superheroes everywhere.

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  17. Dear Kate,
    I am an inclusion teacher at the high school level, and have only recently found your blog and learned your story. Thank you for reminding me why I do what I do. It has been a tremendously difficult year, and I have really begun to question if this is what I still need to be doing; if this is really what I am meant to do. After reading this blog, I think I might be able to make it to the end of the year, and hopefully will be able to take this message with me next year. I wish you, your husband and Brian peace and good memories.

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  18. I have been following your story for only a short time. My heart is so filled with both sadness and hope for your loving family. I just spent over 6 hours in an IEP meeting yesterday for my 11 year old daughter who has special needs, and your words to the school personnel touched me deeply. If only everyone could take those words to heart. Our children who are non-verbal MUST have people take good care of them, keep them safe, and inspire them to be the best they can be. Being complimented as a good advocate for your children is truly one of the most meaningful to hear, I completely agree. You are a remarkable person, and I am honored to read your blog. I am sending warm thoughts and prayers to your family.

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  19. I am a brand-new graduate of a Developmental Services program in Ontario, Canada. Your post - your life and Gavin's - mirror exactly what we have been taught about supporting people with disabilities (and their families) and it is so, so awesome to those lessons here.

    While I cannot promise you that all support workers will do their best to help those they support to live their best lives, I CAN promise you that I will - for other children who share Gavin's spirit and for their parents who advocate so well for them.

    You has shared Gavin's world with all of us out here. Thank you, sweet mother, for all of it. For your fierce love and your empathetic, amazing heart and for giving us - me - another reason to feel so utterly privileged to do what I do. That reason? Your son.

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  20. Love you have deeply for your babes. Being known as a strong advocate for your children is awesome. Thank you for sharing your heart with us.

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  21. Ann Dillon TannousMay 8, 2013 at 11:21 PM

    I know Gavin will continue to watch over and advocate for you and your family for the rest of your lives. I feel that even years from now something will happen and you or Ed or Brian or Hope will recognize that Gavin is still watching over his family. God bless you.

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  22. As a parent to a child with special needs, I completely understand your fears & anxieties surrounding sending him to a new school. As a woman who's been through (too many!) traumas (babysitter @ 8, group of unknown men @ 15, friend #21) I REALLY understand your concern about sending your baby into the hands of another person, whom you don't know. It is beyond nerve-wracking, it's terrifying. This is why, for the first FULL year of my son's 'preschool' (ECEAP) I was at his school from the time the bus dropped him off, to the time they picked him up. As a matter of fact, most days, I'd ride the bus with him. Now, that wasn't the ENTIRE reason, a lot of it WAS my son's special needs. His full on anxiety about being away from us (partially caused by his previous pre-school and their inability to understand and accommodate his needs)
    Now, my son is in 1st grade at a new school, and goes by himself, every day. He has great advocates in his teacher, the special ed team, the office staff and even the principal. His bus-drivers are amazing and evveryone goes out of their way to be careful of his emotional state (he has emotional and behavioral needs with his developmental delay)

    Your post really made me think, though, how easy it is for "other" parents to look at SN children/parents with disapproving looks and thoughts, because they DON'T understand what it's like. I'm sure that I looked like a helicopter mom, being at the school, every day, and even though the staff fully understood the reasons, and once I was able to leave his classroom (it was baby steps, really) I ended up volunteering around the school, and the teachers became reliant on me being able to do these little tasks that they didn't have time for, but needed to be done. (changing the phone number on 500 business cards with tiny stickers anyone?)

    Long story longer, thank you. Thank you for sharing your life, your story, your sons, your happiness, your sorrow, your everything.
    Thank you for being you and helping us parents, one at a time, to be thankful for what we have.

    Marianne @ Sandling All Day

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  23. God bless your sweet family, and thank you so much for sharing your pain and your joy in Gavin. Gavin was so loved by you and so fortunate to have you as his mother -- his advocate and his supporter. Your family's story has touched my "mommy-heart" to its core -- I think I love my two girls more deeply because of hearing your story -- it reminded me what is most important. I do not want to take anything for granted. All children are such an immense blessing and deserve the kind of love Gavin and Brian and Darcy Claire have received from you and your husband. I will be praying for your whole family as you walk the path of life, wherever it leads. Thank you again for sharing your heart!

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  24. I am the Special Ed teacher. I am the one who comes home on the last day of school and cries; because I am horribly sad to see my pumpkins go and because I am beyond proud of every thing they learned during our time. If I had my way, there would be some 400+kids in my class because I never want them to leave me.
    I am also the one who thanks you most humbly for striving for the best for your child. I am the one who appreciates everything you do for your child from first dawn to well into and through the night.
    I am the one who aches for you. I have had losses; personally and children in my professional career. I know your pain. I am inspired by your hope, your joy and your incredible desire to make Gavin's legacy so much for so many. This little boy, from another country has touched my world and my heart in a profound way. You, his mother even more so.
    God Bless.

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  25. I think we all, as parents, advocate for and want to protect our children...even those without special needs. <3 So glad to hear that Gavin is advocating for his little brother.

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  26. What a gift you and your family are to the world.

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  27. It doesn't matter what is inside the "unopened envelope". It doesn't matter because if it doesn't contain the answer you wanted for Gavin. You would have fought until you had the answer you wanted. You are the advocate for a Superhero. Doesn't matter what is inside the envelope. Keep loving ferociously.

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