This is What Happens When I Don't Write...

Lately - as I'm sure you've noticed - my posts have long gaps between them. I have a recipe for my world class excuse that I'm happy to share with you.

One part laziness.

Two parts busy children who run me straight to bed early each night.

One healthy dose of grief which, to be honest, has a strong connection to my writing.

Mix that together - add some "writing would make me miss Dancing with the Stars" or insert any mind numbing TV show in its place - and you have my decadent excuse.

I was talking to my Aunt today about my blog and explaining to her this very struggle. When I started writing, I never expected it would turn into THIS. I also never expected that Gavin would die, but that's a whole other blog post. Throughout his life, every day was filled with a new milestone or therapy or fun adventures or scary medical issues or alternative treatments... I could go on and on and on. But that's the point. I would sit down at the end of the day and know exactly what I was writing about! Now our lives are... I guess there's no other word for it than "typical." Brian's in school all day and Hope is a toddler and when I sit down at the end of the day I think, "Does anyone really want to hear that Hope has a new cup or that Brian and I did an art project after school or we made brownies and fancied them up with a bag of chocolate chips which was a big mistake?" I typically answer that with, "Wait... where's the remote?"

But then... there's the guilt. I don't want Hope to grow up and see the huge gaps in HER little life when I have Gavin and Brian's life together chronicled, in detail, for years. But on the other hand... how grateful I am that I have Gavin and Brian's life together chronicled, in detail, for years. Brian and Hope will absolutely be able to read all about Gavin and understand his story when they're older.

Anywhoo..... that's what's on my mind.

So, since I haven't written in a bit, I have a "dump" of information to catch up on. Here we go... try to keep up!!  Ha!

Brian had his final soccer game and said goodbye to his coaches, Joe and Kevin.

I had to talk him into soccer - he really wasn't interested. I finally convinced him when I listed his friends that had signed up. In hindsight, I should have just led with that information - it was an instant yes when he heard who would be there!

He started off the season knowing very little about the game - and he ended up being really good! I mean, there were a few times that he forgot which goal was their team's - but that's just a small technicality. 

The coaches were positive and encouraging and really came down to the kids levels. Coach Kevin would give personal pep talks to the kids and sneak a teaching moment in at the same time, which Brian responded well to.

Our little guy is on the shy side so I was always shocked to see him out on the field going after the ball. He really got in there and gave it his all!! And once we started using the inhaler for his "Exercise Induced Asthma," he was much more comfortable running up and down the field during the game.

We missed picture day (so bummed to miss those adorable little trading cards!) so I took my own picture after the final game. Brian was excited that they used HIS ball for the last game!

After the game, the whole team went to a restaurant for pizza, cupcakes and an award ceremony. The coach gave a personal speech to each child before giving them their trophy. Brian got the award for being the "best listener" on the team - because he took feedback well and improved a lot from the beginning to the end of the season. Brian, with cupcake icing all over his mouth, was grinning from ear to ear.

 I don't quite understand the controversy about trophies at this age. Brian and his friends are ALL about the trophies - and it was something he was really looking forward to. I see it as a visual reminder on the shelf in his room about the time he resisted trying something new - tried it anyway - ended up having a lot of fun - learned that he was actually really good - and found a sport that he really loves! I don't see anything wrong with that. I hope when he looks at his trophy he remembers all of that - and feels pride.

I was especially proud of Brian at his final game because he was up super late the night before! He had his first Cub Scout camping trip!!

He and Ed joined Brian's pack on a "Night at the Museum" overnight. They had educational activities, toured the museum and watched "The Lorax" before setting up their air mattresses among the animals and dinosaur eggs. They had such a great time! We are really enjoying the Cub Scout experience so far.

While Ed and Brian were away, Hope and I had a little "girl's night!" The first thing she did was steal her brother's cup which is her goal every single day. This time (don't tell Brian) I didn't take it away. 

She walked around like such a big shot all night!

I love spending time with this happy little girl. It's pretty rare that she's a grump!

After breaking her arm a couple weeks ago (dancing!), my Mom is doing GREAT. She'll be getting a hard cast very soon and, if all goes well, she should be cast free before Christmas! She has had such a great attitude about this temporary setback. She's a warrior!

Our new home has no shortage of beautiful, huge, old trees. Coincidentally, our yard is now filled with beautiful, huge leaves. A LOT of leaves. Want an idea of how MANY leaves? Our first time bagging mulched leaves from JUST the front yard filled 32 large trash bags. But the good news?

EPIC LEAF PILES!!

You can even SWIM through them!

We love how they look - and watching them fall like soft snow in our peaceful yard is one of my favorite things to do.

I spend my days at home with Hope and we are never bored! She loves to walk around carrying a "purse" and filling it with toys, books and her snacks - after she dumps them out of her snack cup.

We spend time outside on the driveway where she loves to push her stroller, get dirty, play with chalk and bubbles and play on the playground.

We play in her miniature playroom in the basement reading books and cooking in the "kitchen" and doing puzzles.

We lay around and practice "mothering" her dolls, practicing animal sounds and watching her recent favorite DVDs that were also Gavin's favorites - "Baby Signing Time." 

Hope follows me happily everywhere I go in the house... and easily finds something to do or get into. When she is doing something that she probably thinks is naughty, you'll hear her saying "HOPE! No, No! HOPE! No, No!" That's usually my cue that I should peek around the corner to catch her emptying out a drawer, creating a tissue box explosion or dumping her snack cup. But be warned - if you hear her say "Uh oh" - it's likely too late. The damage is done so you should approach with caution... and a vacuum. She is the funniest little girl - we laugh a lot during the day!

While we're busying playing all day, Brian is having fun at school! Every day he comes home with a big smile and tells me something he learned, what he played at recess and with whom, what he did that was nice, etc. We are so happy with our choice of school for Brian. And we are even MORE excited that they just received the Blue Ribbon of Excellence Award! The Principal of Saint Norbert School, Mrs. Hennessy, and some of the teachers - including Brian's, Mrs. Korom - travelled to Washington, DC to be honored by the Department of Education. Schools that are chosen for the Blue Ribbon are those that perform at high academic levels.

That Friday, they had a day filled with celebrations. Each child brought in two boxes of cereal - one was put aside to donate to a local food pantry and the other was put on a "breakfast bar of champions" for all the kids to share as a snack!

The kids could skip their uniforms and dress down - and they were all given matching "Blue Ribbon" tee shirts! This is the entire school...

And they ended the day with a performance by a local circus act called "The Give and Take Jugglers." The parents and siblings were invited, too! It was such a cute performance - completely tailored to the children and very interactive!

They even had an aerial artist who performed on a rope and silks. This was all in the school gym! 

We're grateful to be sending Brian (and one day, Hope) to a school that knows how to work hard... and play hard. And the gift they have is that the two are often combined and the kids don't even realize it! That, to me, is the sign of an excellent school.

Finally, I had a rare day out this past weekend! My friend, Claire, and I went to see author and blogger Glennon Melton  from Momastery talk! She had a speaking engagement at a nearby church. It was Claire's first time hearing Glennon and she really enjoyed it. If you've never seen her, definitely watch her website for dates in your area - you won't regret it. 

She's hilarious - 

and real - 

and touching - 

and kind. 

Her words are changing people. And her people are changing the world.

I'm honored to count her as a friend. 

Thank you, as always, for caring about our little family.

xo

Meeting Momastery...

On April 10, 2013, the unthinkable happened.  Out of the blue I found myself in our local emergency room - standing over my son who was in full cardiac arrest.  They got his heart beating again, but told us we should say our goodbyes right then and there.  Luckily, if you want to call it that, they were able to stabilize him enough to call a helicopter to take him to duPont.

When the pilots walked into the room to get Gavin ready for the transport, I took them by the arms and begged them not to let him die on the way.  It wrecked me that I wasn't allowed to fly with him. It would have destroyed me if he died with in the air with two strangers.  The pilots assured me they didn't let kids die on their helicopter.  I wanted to believe them.

Ed and I got in the car to head to the hospital.  That time in between life and death - that helpless feeling not knowing if you'll arrive to find your son alive or gone - it was my own personal hell.  I was so desperate for anything - anyone - to help me.  In the car - in rush hour traffic just to make matters worse - I picked up my phone and sent an email.  This was it...

• me
 
• Apr 10, 2013

To

• Momastery

Hi Glennon
My husband and I are taking the longest car ride of our life after our sweet Gavin went into cardiac arrest after a seizure and was choppered to a hospital. It is very grave.  I know you have a huge army so I was wondering if you could ask them to please pray and send all their positive energy my Gavin's way?  I can't lose him.  I just can't.
Kate

Sent from my iPhone

I only knew Glennon online and through emails.  And I, of course, was a regular reader of her blog, Momastery.  I knew she had many, many followers - and I knew she probably received requests all the time to share things and help people - and I had no reason to believe or expect that she would share my request for prayers - and, to be honest, I wasn't at all sure that prayers would work.  But she did share it - and by the time we got to the hospital it felt like the entire world was behind us.  We rushed up to the ICU where Gavin had been taken and... he was alive.

Today Ed and I were on that same road... but this time, we were driving to meet Glennon.  She was speaking at a church a little over an hour away from our home.  As we drove, I started to reminisce with Ed about that day in April.  As if it was right on cue, a helicopter flew overhead.  It felt, in a way, like a full circle moment for me.

Glennon had reserved seats in the front row for Ed and me, which was so thoughtful and unnecessary!!  The set up was very intimate - it felt like we were sitting in her living room.  

When she came bounding out from behind the curtain - 

- and got comfy and casual, it was clear why they set up the stage the way they did.  Glennon makes ALL of us feel (online AND in person) like we are old friends sitting in her living room.  What happened next was magic.  She talked... and talked.  She shared stories and wisdom.  She was open and honest and humble.  She is so, so humble.  Questions were thrown her way and she answered them effortlessly... eloquently... and energetically.  She is full of so much positive energy!!  After the event was over, there was time for everyone to meet Glennon.  

Ed and I had been sitting a couple chairs away from Craig, Glennon's husband, so we ended up chatting with him for quite a while.  You'll never meet a nicer, more supportive husband.  What a kind, kind person.  It was a pleasure to spend time with him.

Soon I was able to have some time with Glennon.  It was a hug that was years in the making.  

There was only one thing I wanted to tell her in person - the only thing that was important to me.  It was this...

I've had several people ask me if I still believe in the power of prayer - if I still believe that so many people sending positive thoughts can really change anything.  After all - there were thousands upon thousands of people praying and hoping and sending their thoughts our way that April day... yet Gavin still died.

I wanted Glennon to know that, to me, it meant everything.  That day I wrote to her from the car - all I wanted was for Gavin to live until we got to the hospital.  But we got even more.  Gavin lived for four more days.  Four more days that we had to process what was happening... to say goodbye... to bring Brian in to say goodbye... to arrange to donate his organs.  So yes... I do still believe.  And I'll forever be grateful that she chose to share that day and made us feel that we had the world on our side.  On Gavin's side.

It was a great, great day.

Well, there were some "not so great" moments, if I'm being honest.  I wasn't feeling great today.  You know when you have a cold and you just feel... out of it?  That was me today.  Yes... I am sick... AGAIN.  Couple that with my terrible shyness and I probably came off as a dud.  It's also hard for me to wrap my brain around people who are nervous to meet me.  I can assure you - I am generally the MOST nervous person in ANY room!!  At one point, Glennon brought me up on stage to introduce me and I was so embarrassed.  It was so unexpected and unnecessary!  Ed told me later that I looked awkward up there.  Thanks, Ed.  Ha!

I met some really lovely readers (and hopefully didn't leave an "awkward" impression on any of them!).  It is always a great honor for me to meet any of you.  The fact that you spend your own time reading and getting to know my family is extremely humbling to me.  One woman wanted to show me that she had a photo on her phone of her adorable children enjoying Gavin's fire truck in Ocean City.  I'm not sure I'll ever forget that moment.  I never know how to respond or react when I am approached (which is only a minute amount compared to Glennon - I don't know how she does it!!) but I want you to know that it humbles me.

We hadn't checked the weather before we left.  We ended up leaving the building and walking into a snowstorm!  Our trusty minivan got us home in one piece - but it was quite a ride.  The hour drive turned into a three hour tour with some scary moments when we could barely see the roads!  In the end, it was all worth it for an afternoon of "truth telling."

We're coming up on two years since the day the unthinkable happened to us and I reached out to Glennon.  Whether you have been here for years or came here the day that she posted - thank you.  Thank you for the prayers, for the positive thoughts.  Thank you for seeing us through Gavin's death... his funeral... my pregnancy... and the birth of Hope.  When the funeral was over and life resumed... you stayed.  And I'm glad you're here.

And thank you to Glennon and Craig... for caring about our family.  Today was a day I won't soon forget.

p.s. - If you haven't read Glennon's book, "Carry On, Warrior: Thoughts on Life Unarmed" - I highly recommend it!  

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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~

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.