Tuesday, September 24, 2013

The Myth of My Amazingness...

There's something that I have been wanting to talk about.  Needing to talk about.  And I decided that today - with my head foggy from a cold that Brian and I have been sharing - is the best day.  Okay, maybe it's not the BEST day - this may come off as incoherent and nonsensical.  Work with me, okay?

I am just a Mom.

Special needs Moms (and Dads!) are often put up on a pedestal.  We get "God only gives special kids to special people" and "You're a saint" and many more very sweet platitudes that, frankly, just aren't true a lot of the time.  I've read horrible stories about special kids who were given to simply horrible people that abuse and neglect them.  And I've seen news stories about special needs kids whose parents are, shall we say, less than "saintly."  So I always took those compliments with a grain of salt and told people, "If this was your child, you'd treat him just as you treat your other children.  It's just something that becomes normal in your family!  You do what you have to do to help your child."

But lately - since Gavin died and while my readership has grown - it's gone into overdrive.  Everything I post... every photo I share... brings out the excessive compliments.  I'm amazing.  I'm so wonderful. I'm so fashionable and have movie star looks.  Okay, no one said that.

It's making me uncomfortable.

I really, really don't want you to put me on any kind of pedestal or feel like I am any different than you. Because truly, I'm not.

On my Chasing Rainbows Facebook page, I've been sharing photos of Gavin from the last five and a half years.  It's a slow process - I'm only on year two!!   I've also been sharing things that we've used to help him... that we created to help him... that he used in therapy, etc.  If I let it, the comments could easily explode my ego.  But I know something that many of you don't.

From the day we brought Brian home from the hospital - when Gavin was 15 months old - we have had help at the house.  We had an aide for Gavin Monday through Friday for the whole day.  This allowed both boys to get attention... allowed me to feed a baby and know that Gavin was getting fed at the same time.  It made it easier to take lots of photos and capture every moment.  Most Moms don't have that and I know that we were very, very fortunate.  There were times that I felt sad - even ashamed - that we had helpers.  When I would wake up with severe stiffness from my Rheumatoid Arthritis and had to rely on these wonderful women to help me with the boys - it sucked.  But having someone here all the time also meant that they really got to know the intricacies of Gavin's care and feeding and therapy schedule. You can't just hire any babysitter when you have a special needs child.  They would need a couple weeks just for "Gavin orientation."  We were so, so lucky - and we know it.

From the day we brought Gavin home from the hospital - the second time, when he was about five months - I've had a therapist in the house nearly every single day.  Know what that means?  I learned a lot.  I got a lot of great ideas.  They showed me ways to help Gavin... and showed our helper how to help him.  Many Moms don't have that and I know that we were very, very fortunate.  I've had a few original ideas over the years - clever way to help Gavin.  But really, many of the things we did were ideas from a therapist, a teacher, another special needs parent.

Gavin's entire life was a team effort.  It wasn't just me.  This blog is mine - and I write from my perspective - and it seems very I, I, I.  But there is also Ed.  I try to maintain his privacy as much as I can and I wouldn't presume to speak for him which is why I don't write "we" as much.  You should know that he became a Dad the second Gavin was born.  He had barely held any babies in his life before Gavin - and there he was in a NICU with a baby who was tiny and had tons of tubes and needed a lot of help.  Nothing seemed to phase him.  He is a total hands on Dad to both boys.  He even changed jobs after nineteen years (NINETEEN YEARS!) because he wanted to be home more to see the boys at dinner and be able to put them to bed.  Many Moms don't have that and I know how very fortunate I am.  How fortunate the boys are.

And Gavin always had an army of doctors and other practitioners that were there to support US as much as they were there to support him.  Doctors that gave me their emails.  Doctors that I cried to.  Doctors that could see the bigger picture and helped me to see it, too.  Many Moms don't have that kind of support... I was fortunate.

My point?

I am just a Mom.  Just like you.  I am thrilled beyond words that my blog has so many eyes on it now - but not because I want or need your praise.  I feel like more eyes mean more people that have the chance to be affected by Gavin's journey... to be changed, even.  I feel like more eyes mean more people that can learn all the things we learned.  Gavin wasn't supposed to go out like this - he was making so much progress and we worked so hard to get him there.  Ed and I could tell that he was on the brink of something big before he died.  He had just started walking a few months before - something many never thought they'd see.  We really believed he would have been communicating this year.  For sure.  It is bringing me comfort to share everything I can in the hopes that other parents out there - especially if they don't have the support that we had - will find new ways to help their own superhero.

I am not the superhero.  I'm just the messenger.  

So... the take home message tonight is this.  Don't spend your time thinking that I am better than you in any way shape or form.  Remember - I didn't do any of this alone.

(But p.s. - if anyone wants to tell me that they envy my fashion sense or that I have movie star looks, that would be cool.  I would know you were lying - but we can keep that between us.)


16 comments:

  1. You already stated what makes you special Kate, and why we, your readers "look up to you" and lavish you with praise. We also see the news stories about special needs children going to not so special parents, parents who DON'T look at their special needs child and see all the wonder and amazement that is them :) They can't see past the diagnosis. You ARE just a mom, but your also pretty special :) And gorgeous, kind of like a movie star ;)

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  2. Your sentence "We really believed he would have been communicating this year" brought tears to my eyes because he IS communicating this year. Just in a different way than you wanted or anticipated. I can appreciate that you are a normal mom with your own set of challenges (fertility, RA, and grief to name a few), but I really value the voice you share with all of us. Thank you for that.

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  3. Oh Kate - I can relate. My second child has autism and people give me the same kinds of compliments. It's uncomfortable for me, because if we take it too seriously then it becomes something we have to "live up to." We need folks to keep us down to earth so we don't put that "saintly" pressure on ourselves. I don't have a blog, I'm just known in my community - I can't imagine the pressure that you would take on, if you let it. DON'T please. I just discovered your blog about a week ago, and what I get from you is community. Special needs parents can feel lonely and isolated sometimes, and these blogs, twitter, facebook, are ways I don't feel so "different." Thank you for sharing, so that I don't feel so alone. I hope you also get that sense of community from those who "follow you" online, so that you know YOU are not alone.

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  4. Your fashion sense amazes me. :)
    However, what really captivates me is the raw emotion present in your writing. The fact that you are willing to admit you are only human and have help is a beautiful thing - couple that with your raw emotion and we are hooked as readers (and "friends")...
    Women put other women on pedestals and aspire to be like others - but the truth is, we are all just doing the best we can with what we have. I love how grateful you are for what you have and how you show your human side to allow us to feel better about ourselves. All women should do that for each other.

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  5. Thank-you for sharing this post...so honest & poignant. We know you are just a Mom, just like the rest of us...but it feels good for us (as followers of your blog), to support you on your journey just in case you may need us! I pray for your family and love reading about your children. Gavin's pictures touch our hearts and keep his memory alive for so many people...(Thank-you for sharing that with us, too). I, also, am a Mother to our special needs son with autism, and in that way, I can relate to the on-going therapists, on-going desperate searches for that "miracle" discovery that is going to be the answer for a challenge. But as he grew older, therapies slowed down, and now it is sometimes a lonely & isolated life that we lead (like Lisa said) just because it is 'easier' that way. And, I think you are right about Gavin communicating, I watched your videos of him with his communication device and he was amazing! It reminded me of our son when he 1st started using his Springboard Lite to communicate. He now uses an Ipad and it has become his 'voice' just because our son is still non-verbal. But I have witnessed many children start to talk after utilizing a device. Hugs to you and sweet memories of dear Gavin.

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  6. You are fortunate, Kate, because you and Ed utilize the resources that you have. That is one of the points I use when I talk to people about healing, it is one of The 5 Facets platforms: we each have everything we need to heal, we just need to tap into the tools and resources at our disposal. So many people need to hear this, so that they can begin thinking about what resources they have access to... Thanks for sharing...

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  7. I know you are a mom, I know you are doing what you need to do to move on day to day. I can see that you are fortunate with your circumstances when Gavin was a baby, and I can clearly see you don't want to be put on a pedestal. However, I still admire your strength, whether you had help when the boys were tiny, or your husband was a rockstar daddy helper, what gets me is your choice to seemingly always choose to not give up on hope and the raw honesty you have about how hard it is to make that choice in the throws of grief that no parent should ever have to go through. You may not want the term super hero and thats fine, but respect I have for you is tremendous! Thank you for share bits of your life with the world!

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  8. Like beauty, amazing is in the eye of the beholder.

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  9. You are an inspiration to me. Not because I idolize you but because I have my own journey with a child who changed me forever. You are an inspiration to me because I know that I am not alone and someone else understands. Because you love your children and always will no matter what. Because you understand that having a child with special needs doesn't mean your life will not be normal it's just a different type of normal. Because when I think about the possibility of losing my daughter which is very real and present in my daily life I think of you and Gavin and how the love you shared gives you strength and it helps me to breath again.
    I think you are a wonderful mother and truly an inspiration for many of us.
    *Charity

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  10. Thanks for your reminder that we lean on each other - no one has to be in this alone no matter what "this" is - parenthood, special needs, family problems...

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  11. You, pretty lady, are a teacher. You teach us and lead us by example. Not from a pedestal, but from this blog and from your heart. You are lucky enough to have the support and help that you did, you learned all you could, you now share that all with us. Ed, Brian and Hope are so lucky to have you, but so are we. You have a wonderful way with words that is truthful, not fluffy, but beautiful. And we all learn. And take what we need from that. And hopefully, make this world a better place.

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  12. Very good post, Kate. Not at all incoherent. :-)

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  13. How about your hair? Can I say that IT is amazing, and special, and wonderful? From a reader with boring straight hair ;)

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  14. That last comment about your hair made me laugh. I think all of us with straight hair concur that your hair is amazing. (Gush, gush, idolize...) ;)

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  15. From a reader with curly hair, I want to add that I love your hair as well. I wish mine would look like that!! *hugs* to you and your beautiful and fashion-forward family.

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  16. How about you are a regular mom who has been put into a difficult (understatement) situation and has been handling with amazing grace and strength?

    Also, you're gorgeous! And I'm not just saying that :)

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