Wednesday, February 25, 2015

True Confession...

I have been trying to change the "About Me" section on this blog for the last four days.

Actually, I have been trying to change that section for over a year.

Gavin is dead.  There's nothing more permanent than that.

Yet somehow I can't bring myself to make it official on this blog.

So I've been frozen.  On my couch - with my computer on my lap - every night.  I got as far as changing my photo.  But not the words.  I'm frozen.

I try.  And I type.  And I backspace.

I let everything and everyone distract me.  I know what every single friend is up to on Facebook and Twitter and Instagram. I try some more and type less.  I dust.  (You know it's bad when that happens.)

The truth is I don't want to want to do it.  But I want to - and I hate that.  Did you get that?

The truth is: grief.  It's twisted.  And permanent.

One day... I'll make that change.  And it will be the right time and the right day and somehow I'll find the right words to make it not so bad.

But right now, if you'll excuse me, I need to organize my closet.

Saturday, February 21, 2015

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...

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!  

Thursday, February 19, 2015

Happy New Year, Take Two!...

Gung Hay Fat Choy!
Today is Chinese New Year - the year of the Goat.  Actually, the animal is up for debate this year between the goat and the sheep. But if you ask Hope - every day is the year of the Rabbit.  In particular, HER rabbit that she now carries with her most of the day.  Actually, she carries two rabbits - the pink one is hers and the blue one was Gavin's!
Our family doesn't observe any traditional Chinese traditions, but I am taking it upon myself to announce that this year, Chinese New Year is our New Year "Do-Over."

2015 didn't start off very well for us.  Constant sickness... Hope's trip to the Emergency Room... Stress... more sickness... are we moving or not moving... Brian's visit to the cardiologist... and more behind the scenes crap that wasn't worth writing about.
But we are taking back this year and starting over.

The decision is official:  we are NOT moving.  Ed's company, Shire, is moving to Lexington, Massachusetts - but we are not.  We gave it a lot (and I mean a lot) of careful thought and consideration but in the end, we just didn't feel it was a good plan to uproot our family.  We know that kids are resilient - especially Brian - but we just weren't thrilled about piling one more major life change and taking him away from his school and his friends and his home.  
Hope doesn't know any different, obviously, but it will be nice for her to grow up where her brothers did.  Not to mention, their only remaining grandparent, my Mother, is close by.
This means that Ed will be job hunting, which is stressful.  But he's pretty brilliant, if you ask me, so I'm sure it won't be long before someone snatches him up.

We also went ahead and planned a trip to Ocean City, New Jersey this summer!  It made us feel good to think outside the bitter cold and snow and plan for some summer fun.  Being in Ocean City is a sure fire way for us to feel close to Gavin and all the incredible memories we made with him there. The Ocean and the salt air have a way of making everything a little bit better.

As many of you know, I participate in a HUGE consignment sale twice a year - the Just Between Friends Consignment Sale in Oaks, PA.  The Spring event is coming up on March 19th and I'll be selling and, more importantly, buying!  I always get a lot of questions and emails about the actual sale or about consigning in general - so I thought I'd create a little series so you can follow along while I prepare (tagging Hope's baby things will bring tears to my eyes, for sure!)... shop... and sell!  I'll be posting here, on Facebook, Instagram and Twitter.  Hopefully it will be fun for you - but it will really be a great distraction for me.  That is because....

We are getting close to April which means the two year anniversary of Gavin's death is just around the corner on April 14th.  Because we've been down the rabbit hole all winter with one thing after another, I didn't give much (or any) thought to creating an event.  If you remember, the first anniversary was pretty special with "Gavin's Playground Party."  Not only was it a fun night - and a HUGE distraction from our grief - 
but we raised over $60,000 for the all abilities playground at duPont Hospital!!  I'm feeling disappointed that I haven't had the time or energy to figure out a plan. I have a desire for all of us to come together to change someone's life - somehow, someway - maybe as a way to honor the way Gavin changed many lives... but I don't know who or how.  I'm still thinking...

If you celebrate Chinese New Year - I wish you a healthy and prosperous year.

And to those of you joining us in a "New Year Do-Over" - welcome!!  In my world, you can begin again anytime.

Monday, February 16, 2015

Do You Miss Me?...

"My son died," I find myself telling people who don't know or haven't heard.

Inevitably they say things to me like, "How are you still standing?  I don't know that I could survive that.  I don't think I would ever get out of bed.  I would want to dive into the grave with my child if they died."

And I always explain it the same way:  "Losing my son is the single most devastating thing that has ever happened to me - and probably ever will.  But hurting myself or giving up or wanting to die, too, would not honor his life.  I made a vow when he died that the best ways to honor Gavin's life were to live... and to not screw up his siblings.  He would be very upset with me if I ruined his brother and sister's lives."

So, that is what I am doing.  That is what WE are doing.

I have to believe that we are on to something.

As I sit at the art table and color... or make blanket forts... or play game after game of Chutes and Ladders...
...the giggles and the smiles and even the occasional cheating and making up new rules of a game make me feel close to you.
I remember sitting at the same art table playing with you.
As I chase your sister around the house and watch her get into mischief over and over and over again...
...I find myself quite amused.  Even when she's naughty.
I remember when you started "getting into things." But knowing how hard you worked to get into those things in the first place - a "mischievous moment" turned into a "miraculous moment."
In other words - you had a good excuse.  Hope gets away with it because - well - could anyone resist that face?!?
As I watch Brian and Hope play together... 
and as I see their relationship deepen and widen - 
I smile as I remember how close you and Brian had become.
He misses you so much.

There are a lot of things I can do.  I can play and I can love and I can mother your brother and sister with my whole and broken heart.

I can try to help others as much as I can to continue your legacy.  I can talk about you so Brian and Hope remember and know you.  I can love your Father.

I can remind myself to breathe and eat and not drink and get sleep and breathe and smile.

But there's one thing that I can not do.  I can no longer mother you with my whole being.  I can't cook for you... feed you... make you smile or laugh.  I can no longer take you on rides or play with you in the playroom.  I can no longer hear you giggle when I tickle you.  I can't plan for your future.  I can't hold you in my arms.

So as I rock your baby sister in your rocking chair or tuck your brother in at night...
I remember the nighttime snuggles we shared.
And even though I know you have plenty of loving souls to mother you in Heaven and I am sure you are so, so happy and free.  I wish... selfishly... that I could get the answer to the question that weighs heavy on my heart.

Do you miss me?
Do your arms ache for my embrace as much as my arms feel empty without you?
I just need to know that you miss me.

(I know it's very tempting to answer this question for Gavin... but please know that the only person I desire to hear the answer from is him.  One day... )

Thursday, February 12, 2015

Our Heartbreaker's Heart...

Yesterday was Brian's appointment with Dr. Gina Baffa, one of the top pediatric cardiologists (in the world, to us!) at Nemours A.I. duPont Hospital for Children.  Otherwise known to us as "Gavin's Hospital."  And Dr. Baffa was the cardiologist who cared for Gavin in his final days as he had multiple cardiac arrests.  When issues cropped up with Brian and we wanted him to be seen by a cardiologist - she was our only choice.  The hospital doesn't even accept our insurance anymore, but we didn't care.  It could only have been Dr. Baffa and she didn't disappoint.

The short story:  Brian's heart is in perfect working order.

The long story:  It was a long, exhausting day with the end result being a huge sigh of relief for me and for Ed.

My Mom came to the house at lunchtime to stay with Hope and Ed and I drove with Brian to the hospital.  It was our first time seeing the new renovations and it was pretty incredible!  We only saw the main lobby and the gift shop - but it was very impressive.  Brian spent some time in front of their interactive "Discovery Wall" which we all thought was very cool!

We also stopped into the gift shop, a ritual of ours, and picked out some Valentine's Day gifts for Granny and Hope!
When we got to Cardiology, the first step was to get an EKG.  After the test, we met with Dr. Baffa to go over the results.  She started with all wonderful news about how beautiful his heart was, and how this chamber and that area looked good and so on and so on.  All I could think of was, "She's preparing us for bad news by telling us all the good stuff first."  That describes just how scared I was. So when all of a sudden she said, "But... I did see something unusual..."  I suddenly felt dizzy.  I could barely concentrate on the other words - all I know is she wanted him to get an echocardiogram to make sure everything was okay.

I gave myself an internal pep talk and a "get it together" lecture and turned to Brian with a smile.  I was terrified - but he wouldn't have known.

The echocardiogram was long - about 40 minutes - and Brian was such a trooper.  He laid on this side and that side - tilted his neck back and lifted his arm up.  He was so good.

It didn't take long before Dr. Baffa was back in the room to tell us that everything was fine.  

Everything was fine.
Everything was fine, Kate.  (I still have to remind myself.)

She recommended that we follow up with a pulmonologist to get to the bottom of the shortness of breath issue - and we will.  Many people have suggested that Brian might have "Exercise Induced Asthma" and this is something she said it could be as well.  We shall see.

We left feeling extremely relieved.  It's hard for us to not go to a dark place of fear sometimes.  Gavin stunned us with his sudden, unexpected death from, basically, heart failure.  What if there was some kind of genetic issue that affected the heart of Gavin - and went undetected in Brian - my mind went all over the place with worries and fears.  As I put Brian to bed last night, I told him how happy I was that his appointment went so well.  He said, "Mommy?  Why am I different than the other kids?  Why can't I keep my breath and run like they do?"

I didn't have an answer... but I vowed to him that I would find out.  And we'd figure out how to fix it together.

I had planned to write all about the appointment last night - but I'm battling a bad cold and was just so tired.  "I'll write in the morning when Hope goes down for her nap," I thought to myself.

Well.... that didn't happen.

Just as I sat down - the phone rang.  It was the school nurse.  Brian had thrown up in the classroom. In the nurses office.  In his shoes.  Everywhere.  She put him in a borrowed sweatsuit and socks until we got there.  Ed left work and raced to the school to get him.  He's been in bed all day.  He sat up for a short time to play with his lego table - not straying too far away from his bucket...
...but he couldn't stay "upright" for long.  Poor kid.  Poor ALL of us!  I would say this is almost becoming comical - that we've had a never ending cycle of sickness this Winter - but it's not.  At least I'm not laughing.  And if I do start laughing, then you know that I have lost my mind.

If you're keeping count - this is illness #725 in our home since December.  Now we have the stomach flu in the house.  The sick Mom has to care for the sick son and keep the now healthy daughter away from the brother she is obsessed with.  Thankfully, Ed worked from home today so I didn't go totally insane.  But honestly - I really think it's time for us to leave the country to break this spell.  I am about 5 minutes away from contacting a priest to perform and exorcism in the house.  (ha!)

Oh, and if you're also keeping count of the number of the things we've had to cancel since Christmas - you can add another rescheduled trip to meet my Great Nephew, William, in New Hampshire... and our plans for Valentine's Day weekend.

The universe owes us BIG TIME.  I hope it pays in massages and pedicures and sleep.  File that under:  "A Girl Can Dream."

Monday, February 9, 2015

Falling Apart...

There's no other way to describe it right now:  I feel like I'm falling apart.  Well, like our little world is spiraling out of control at the moment.

It's more than illnesses at this point - even though that has been stressful and never-ending and isolating and worrisome and a trigger for a lot of trapped grief and emotions.  No big whoop.

It's more than illness - even though Hope caught ANOTHER cold... even though her yeast rash got WORSE and I had to go back to the original medication, Nystatin ointment, out of desperation... even though I then caught a cold and I feel like crap.

It's more than illness - even though illness has caused us to cancel MANY things.  Ed and Hope missed the family Christmas party... Brian missed a friend's birthday party... we had to sell our tickets to Disney on Ice (and we had really great seats that I bought months and months in advance)... we had to cancel a trip to meet my first Great Nephew, William, in New Hampshire - TWICE... and the list goes on.

It's more than illness - even though Hope's issues, whether it was Croup or the Flu or teeth or a painful yeast rash or a cold or a combination of two or more has kept her up at night wanting something, anything, desperately from Mommy to make it better.  Sometimes I got lucky and could - sometimes it was an extra long night for both of us.

It's more than illness.  There's an underlying stress about Ed's company relocating to Lexington, MA and the uncertainty of all of that.

And it was never more apparent that it was more than colds and canceled birthday parties and the flu and sleepless nights until this morning.  Suddenly all of that meant nothing.

"Mommy?  Do I have gym class today?" Brian asked me.

"No, buddy - that is on Wednesday,"  I replied.

"Good."  He seemed relieved.

"Why good?  I thought you loved gym!"  

"I do.  But every time we run I can't catch my breath and my chest hurts.  That's all," he said as he put his hand on his HEART.

And then he left my arms to get on the bus.
Brian has had a heart murmur his whole life - and until this morning has never shown any symptoms or had any complaints.  I took him to see a Cardiologist (at duPont, of course) when he had just turned four and was told that the murmur was innocent and not to worry.
Well, today - I have cause to worry.

I immediately called the office of Dr. Gina Baffa - the cardiologist that treated Gavin in his final days.  She fit Brian in immediately this Wednesday at 2.

Maybe it's nothing.
Maybe it's something.
Either way - I'm falling apart as things continue to get piled on top of me.

You'd think after 5 1/2 years with Gavin - when one issue after another was piled on top of me on a monthly, weekly, sometimes daily basis - that I'd not be phased by this.

But that's where you'd be wrong.  With Gavin, I was only ever "blindsided" three times.  

- When he was born and it became apparent that something was wrong - but no one knew what.
- When he suffered a severe corneal abrasion and we spent months trying to save his eye, which included unlacing his stitched-closed eye every two hours to apply ointment - and he still came close to losing his eye.  That was a pretty stressful time.  You can read about just ONE of my meltdowns during that time in this CaringBridge post.
- The biggest blindside of them all?  When a stupid febrile seizure - out of the blue - stopped his heart and ended his life.

I'm not used to expecting anything from Brian.  So now I'm scared.

Maybe it's nothing.
Maybe it's something.
But suddenly the last three months of constant illnesses and frustrations seem insignificant. 

I will write again after Wednesday's appointment.
Please, if you could, send positive energy and fervent prayers our way...

Thursday, February 5, 2015

Longing For Summer...

If you haven't noticed - we've been sick a lot this Winter.  And Mommy is about to lose her mind even more.  Hope has now come down with a cold - after Croup in December, Influenza A and a double ear infection in January followed by a terrible, stubborn and still hanging on yeast rash - and now this.  And as if it couldn't get worse - we have an appointment to see the pediatrician this afternoon because this morning she started pulling on her ear.  Really?  Seriously?  I mean, really?!?

But, there's this:
We like to keep our sense of humor around here - and Hope picked up on that early!
All these germs and illnesses and cold days and canceled plans have me longing for one thing.  Summer.  And not just summer - but an Ocean City, NJ Summer.  And not just an Ocean City Summer - but time spent by "Gavin's Pier."

If you remember, last June we celebrated our tenth wedding anniversary in a unique way.  We flew to Las Vegas as a family and renewed our vows in the Elvis Chapel!
Then, the following month, we all went to Ocean City for a vacation.  My friend, Kate, from Kate Giovinco Photography, took photos of us by Gavin's Pier while we were there.  I decided we should all wear our "wedding clothes" because - well, I didn't really have a reason except I thought it looked pretty!  And we're not often dressed up so - why not!

Kate is exceptionally talented in general, but she really came through with these beautiful photos.  I hadn't shared that many before this because a few were on our Christmas card.  I wanted at least a couple of the pictures on the card to be ones no one had seen!

There are a LOT of photos, but I couldn't pick and choose so I'm sharing them ALL!
This is one of my absolute favorite photos of Brian.
Hope was in her "non-smiling phase" so it was hard to get her to crack.  Plus, she was completely mesmerized by the ocean sounds and was fighting to stay awake!  (Which, for me, is a constant state of being!)
Brian was so good during the photo shoot, but was really itching to get his feet in the water.  I had one of those "moments."  You know - the moment when half of you wants to maintain control and order but the other half is thinking "who cares - let's go for it and be 'real.'"  So... we went for it.
His pants were soaked... and I remember that I couldn't believe that I didn't care.
I loved watching Brian play on the beach where we made so many memories with Gavin.  And I can't wait until this summer when Hope can enjoy that same spot even more.
I'm so grateful to have all of these photos - especially this one which is so poignant to me.
Thank you again to Kate Giovinco for capturing my favorite people in the world... including Gavin.

If you live in the Philadelphia or surrounding areas, be sure to check out Kate's website and Facebook page if you're looking for a photographer!  She's having a special right now, actually.  It will end at the end of February, so if you're interested click HERE!


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