Wednesday, May 1, 2013

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.




44 comments:

  1. Thank you, Kate. <3

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  2. Just when we couldn't love you anymore, you post this. You are human, you are honest, you are our friend and our teacher. Thank you, Kate.

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    1. I couldn't phrase it any better!

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    2. Perfectly said by Anonymous. Thank you Kate for sharing your truth. Reading your story has enriched my life more than you can know.

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  3. You are an inspirational woman - thank you for your honest words, your kind heart and brave outlook on life.

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  4. This is very powerful. Thank you for sharing your story.

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  5. Rock on, warrior! Wonderful post. Thank you for once again putting yourself out there and sharing even more of yourself with us. Much love to you and your family!

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  6. Oh, my God, Kate. Whoa. I can't imagine what this felt like to write and even more so, to post. I have admired your approach and commitment and love for your family but never in a million years did I think I could actually relate to you. After I pick my lower jaw up off my desk, I will swallow this enormous lump in my throat and take my little boy out in the sunshine to play and to mull over, well, just about everything. Thank you for a very moving, inspiring, and brutally honest post. *sniff*

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  7. You are such an inspiration Kate. Sometimes it is easy to feel sorry for yourself. Like you I had a lot of horrible things happen to me in my life even before the loss of my son. When I was pregnant I imagined that it was finally my turn to have a healthy and happy family, and that I would be such a better parent to my son than my parents were to me. I had so much of myself tied up in him, and so when he died at just three days old, I have been trying to come to terms with the 'what is wrong with me that extremely terrible things keep happening to me?' I'm working on trying to take care of myself now and to see myself as a person who deserves happiness.

    Thank you for sharing your journey with us, and I am ever so sorry about Gavin. I only started reading your blog at the time when he was on life support but before he passed away. It is so very apparent how much he was loved and cherished.

    Lisa
    http://dear-finley.blogspot.com

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  8. No words could possibly do this justice. You and your MamaStory are beautiful...inside and out, without a doubt.

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  9. Kate, thank you for your brutal honesty. I wound up at your the day of Gavin's seizure. You are an amazing woman with strength that you share with everyone you touch. You write in a way that allows everyone that reads it to FEEL it so richly. Gavin has truly changed lives, your family has changed lives. Thank you for sharing so openly and honestly. Your heart, your story, and your family is forever changing so many people!

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  10. This post is...wow. Powerful. Inspiring. Moving. Thank you for sharing your "Mama story".

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  11. I just read your post on momastery, I think this is the first time in my life I have heard of someone to go through the same child hood and young adult pain I had, being the good hearted couldn't stand bullies and never really fit in with anyone child, molestation, rape, drinking, for me drugs, attempted suicide and infertility, I now after multiple miscarriages and being told I wouldn't have kids have a 25 weeker now three year old little girl,and a very lively two year old boy, they are best friends as well. My kids are my whole reason for happiness, They are my sledge hammer against that wall as much as I have alwasy wanted to take down have been unable to crack until now. You are a incredible person It is a honor to me to have stumbled on your families story just 5 months ago, I have followed as much as I could, I was caught unexpecting and my heart broke so badly when I learned that gavin passed away. Gavin is a miracle and a proof that life and love is worth everything. The love you have in your heart for yourself and whole family and how you turn that into strength amazes me. Sorry if this is to long or all over the place, Your story has always made me wonder how you did it and I have admired you for the person you were before and even more so now, you gave me some hope Thankyou for choosing to write this <3

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  12. After reading your 'MamaStory' I can see why Gavin was given to you and your husband for you to love, nurture and care for. You are one of life's 'special people'. I am just so sorry that Gavin was taken from you so cruelly with no warning, rhyme or reason and I hope one day that you, your husband and Brian can find peace. I won't wish you love, because it is clear that you have that in abundance, but I wish you peace xxxxx

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  13. Keep putting one foot in front of the other girl! And 10 finger tips on the keyboard....love ur inspirational posts. Ginny

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  14. Thank you so much for opening yourself up and sharing such a heartwarming story. Gavin was a beautiful little boy who touched many people in his short little life!!

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  15. Thank you again for sharing your experience with us, Kate. You and your family are truly amazing!

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  16. Your Mamastory was amazing, and so are you! Thanks for sharing.

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  17. I'm a Monkee. I read your guest post this morning on Momastery and had to come visit your blog.
    Thank you for sharing your story and your family with us.

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  18. Thank you for sharing your story - both the 'before Gavin saved you' and the 'after Gavin saved you' parts. Both BG and AG are inspiring, because they make up the totality of who you truly are, and what it took to become the you that you are today. It's such an honor to experience the story of one who has so clearly discovered their true self, and who lives life completely whole-heartedly. You and your family are changing the world.

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  19. I just love that imagery of sitting down with God before we are born and mapping out our lives. What a great perspective. Kate - you are so brave, so beautiful. How you are writing and putting these truths down for strangers to read...it's really making a difference. I hope you can see that. I am such a different person now than I was before I "met" you and Gavin. I will truly never be the same. Thank you for changing me.

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  20. Thank you for sharing your shameless truth.

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  21. I got chills reading your post. You really are so amazing and I hope that I can one day have your grace and strenght.

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  22. Kate, I have been in awe of your strength and grace throughout all you have endured. As I read your Momastory today, I was left with the distinct thought that you are a superhero. You learn, you help, you tell the truth, and you inspire. Like son, like mother.

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  23. I already knew you were a strong amazing woman, but the bravery that it took to share you're whole life story is...well there are no words.

    Thank you so much for sharing your reality with us Kate.

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  24. Kate, after reading this I admire you all the more. You truely are a remarkable person, for so many reasons. May you have all the happiness you deserve in your life ahead.

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  25. Kate, I commented on the Momastary site....but felt the need to reach you directly. Thank you for sharing! Thank you for being honest and real. Thank you for your beautiful insight.

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  26. Thank you so very much, Kate. Your courage has touched and inspired so many. May God have wonderful plans for the Leong family.

    Lisa

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  27. I admire you so very much! You are MY hero, Kate!

    Hugs,
    Jackie

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  28. Kate,
    I've been reading your blog for awhile now and your strength is truly humbling.
    I have a friend who is currently watching her 8 year old son die of cancer. We (her friends) have set up an event where people from around the world send him and his little sister cards and trinkets from around the world to celebrate his 9th birthday in July which he will not see.I was wondering if you'd mind sharing the link to their blog and the event. I totally understand if you can't, I can't imagine what you're going through right now, I just thought it was worth asking. Thank you, you & you're family are in my thoughts often.

    https://www.facebook.com/#!/events/118404285025290/

    http://jedimax.com/

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  29. Your post is so beautiful Kate, and I'm sorry you have suffered so much, even though your soul may have picked this route, because She knew you could do it. You ARE doing it. Full balls-to-the-wall doing it. Living.
    I've been following your blog for a few months now, and whenever I see your pictures, I can't truly believe Gavin is gone. I can't even begin to imagine how this is for you and Ed and Brian. Please know you are in our thoughts and prayers, and truly are a MamaWarrior. xo

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  30. Kate, this was the bravest and most incredible post I think I have ever read. I am so glad that you felt comfortable sharing your story, so that other people could be touched. Not only is Gavin changing people, his superhero mama is as well. (((Hugs)))

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  31. Thank you for being YOU! and for sharing yourself so honestly and openly. you share with such beauty and strength…just thank you.

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  32. Dear Kate,
    I have followed quietly since I met you and your family. I have found myself reading and rereading journal entries from the last few years. I suppose before your Momastery post I may have felt a little, well intimidated by you. It seems almost funny now hearing your story so much like mine, that my connection to your story felt so strong. Somehow I think that survivors, well we recognize one another, even if we don't know that we do. I love that you are serious, and kinda obsessive when it comes to your boys, I love that you are not afraid to break bad when your mamas heart tells you that there is something not quite right, I love that you tell it all and tell it big. You celebrate the stuff and the people in your life (good and bad) and I am better for it. Sometimes walking around with this wounded heart of mine makes me feel...well like I am just too much. Sharing in your journey has made me feel less alone. You are a mother, daughter, advocate, wife, and writer that I can say I truly admire.
    I am so sorry that Gavin could not stay here on earth with your family, It was an honor to be even the smallest part of his journey. He is beautiful, in every way that a young boy can be. I will miss him, in fact I already do.

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  33. Thank you for sharing your Gavin with us, for allowing us to learn from his life. Your strength and grace is an inspiration! I am saying prayers for God's hand to be felt in a mighty way on you and your family.

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  34. You are so not alone in your truth. Imagine us all standing shoulder to shoulder with you.

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  35. Wow Kate wow Sending hugs your way That post gave new meaning to the name of your blog Chasing Rainbows, you chased your own rainbows long before you chased Gavin's. Thank you for having enough courage to share your story swith the world.

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  36. I too found you through Momastery then came here and read all the way back. I've been reading for an hour. And laughing. And crying. And weeping. Thank-you for sharing your sweet boy with the world. And thank-you for sharing YOUR story. I'm trying to think of a word to describe how reading all this has made me feel, and the first word to come to me was "humbled". I am truly humbled. I still have so much learning to do and your words humbled me. May God keep you in His love and care.

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  37. Thank you for your courage and for sharing your story. I too am a mom that had to give up alcohol, and I know how hard it is to tell the world. And I think your bravery makes it easier for others to see there is no shame in accepting that sometimes it's not only necessary but also better when you give up drinking. Like the rest of your readers, I feel heartbroken over your loss of Gavin. I can't imagine what you and your family are feeling, but his story educated a lot of us about organ donation. Thank you for sharing with us.

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  38. I came over after reading your amazing story at Momastery. Thank you for sharing your courageous story with the world. I'm so sorry for the loss of sweet Gavin...your entire family is an inspiration.

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  39. I just read your post on Momastery. I appreciate you sharing your story. I love the references you made about your soul pre-determining life for us before we are even here. I have always felt that the hardships that I've endured only make me stronger and I haven't always seen the beauty in that until I get to the other side, sort of like a rainbow. I am so very sorry for your loss of Gavin and no words that I say or shout can change that for you, but know that you are loved and that he is watching over you like no other.

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  40. Just wanted to say thank you to you, Gavin, and your entire family. You were wise in getting sober before being a parent. I was completely sober before and during my pregnancy (and magically thought my previous issues with alcohol were somehow erased). Once I was done breastfeeding was when our S's medical issues started. And until a little over 6 months ago--I was still drinking. Not a good decision. I'm sober now though...and plan on sticking with it, and being honest about it. Going through what we are with our child (progressive neurological condition), I've recently been coming to some of the same realizations that you did--that there may be a purpose to all of this. And that I can choose to react to S's diagnosis/illness in as positive a way as I can.

    I know it seems cheesy--but I know I've known S for way longer than her almost 5 years.

    I'm so sorry for your loss. Just know that you and Gavin ARE helping many, every day. I am one of many.

    Peace to you.

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  41. Wow! That was BRUTIFUL! I am so glad you told your hard truths! I know you will help others with this and many other future blogs. I just know it in my heart. I just loved: "That adversity can make them either bitter… or better." Keeping that in my heart. Thanks.

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