Monday, October 20, 2014

What It Feels Like One and a Half Years Later...

It's hard to believe that Gavin's been gone for one year and six months.
79 weeks.

554 days.

Hope has been with us for 46 weeks, to put THAT whole other nutty event into perspective.  It's still on a pretty regular basis that Ed and I look at each other shaking our heads with a "Can you believe we have Hope?" look that we know without having to say a word.  She has absolutely helped our hearts to heal.
I was told early on that the second year was much more difficult than the first after a major loss.  I didn't want to believe that.  I was cruising along for a while - even able to lift others up who were grieving.  And then, almost like a light switch, it hit me.  When I put two and two together - and I'm bad at math - I realized that this was what everyone was talking about.  The dreaded "year two."

Lately, I've been finding Gavin in the nooks and crannies of our home - almost like these little gems were purposefully hidden treasures meant to be discovered just at the right time.

While wiping up some of Hope's lunchtime spills on the kitchen floor, I saw the lotion between the cracks.  When Gavin was five, I left him alone in the kitchen to run to the bathroom which was right around the corner.  Somehow - someway - we'll never figure out how - Gavin got a container of lotion from the counter and opened it and... had a lot of fun.
It took me forever to clean this very concentrated lotion off the floor - and eventually I gave up on the lotion between the cracks in the hardwood.  I'm so glad I did.  Seeing that lotion brought back that fun moment and made me smile and cry and miss him all at the same time.

As Hope chooses toys to play with during the day, I find that she gravitates not only to the same toys that Gavin played with (that were HIS toys, actually!) - but the same activities.  She loves to explore the house and cruise the furniture.  She loves musical toys and things that light up.  Do all babies like these things?  Probably.  But for me, every toy has a story.  Ever song has a memory.  And each little sound or activity is like a trigger that brings me right back to Gavin.  I hope those memories - in every detail - never go away.  I want to be able to tell Hope and Brian the stories I hold in my heart about their big brother.

Thank God, though, that I wrote from the time he was two months old.  Thank God I took what seemed at the time like WAY too many photos.  Now we know the truth - who cares if you take "way too many photos" or write "too many details" - there is no such thing.  I am so grateful to have his life - and his death - documented in detail.

So much has changed in the last year and a half.  My daily life has changed dramatically.  I no longer have loads of paperwork or insurance challenges.  I am alone in the house with my children - no aides, therapists or teachers in and out.  It's still hard to get used to the fact that we can pack for a vacation - or even just a day trip - with such ease.  That seems like a good thing, but it actually makes us feel sad.  We miss pureeing Gavin's food in bulk - it became a project that Ed and I would often tackle together.  We would go back to the days of extra work and extra planning and extra everything if it meant we could have him back.

Wouldn't it be great if we could just "have him back?"
Other things have changed as well.  Relationships have changed.  Some for the better... some for the worse.  I have changed, too.  I have less time and patience for drama or any other issues.  I see every issue with an entirely different set of glasses.  There's been a major shift in my perspective.  I guess what I'm trying to say is - when one day you wake up happy with two healthy children and go to sleep (or don't sleep as the case was with me) that night knowing your oldest child is going to die, it puts things into perspective.
The way we parent has been a constant since April 14, 2013.  That hasn't changed.  We still put our children first.  We continue to be very honest with Brian.  We still include Gavin in conversations with Brian and celebrate his special days.  We stay positive and enjoy every minute with our children on earth while somehow managing to balance that with our grief.  

We didn't know what to expect from Brian after Gavin died.  I will tell you the truth - I was nervous.  Here I was pregnant, he was starting a new school, his brother was gone - it was a lot to handle for a 4 year old.  But Brian has been incredible.  There has been no acting out... he has expressed his feelings to both of us along the way... he still talks about Gavin and thinks about him and loves him.  He has accepted Hope into the family and adjusted to having a baby in the house perfectly.  We couldn't have asked for - or predicted - how well he would handle everything.  He's blown us away.
One of the hardest things for me is the calendar.  As the days and weeks and months go by, I know I am further and further away from the last time I saw him smile.
Things will continue to change.  People will come and go from our lives.  Life will go on and Brian and Hope will grow.  We will create wonderful, happy memories as a family.  But two things will always remain the same...

We will never stop grieving our firstborn son.  
And we will never stop believing in...or expecting hope.

Mommy loves you so much, Gavin.

Monday, October 13, 2014

Sunny Day, Chasing Those Clouds Away...

We finally made it to Sesame Place to celebrate what would have been... what SHOULD have been... Gavin's SEVENTH birthday on Sunday.  
But before we entered the park, we made a special stop for lunch.  The day was as much about Brian as it was about Gavin!  And the key to Brian's heart?  (Well, one of them)  Pancakes!!  We took him for his first experience at IHOP and it did not disappoint. 

"Cheers to Gavin!"
Hope had a great time, too, and was very considerate.  I only had to pick up 25 things off the floor!  Ha!
It was, fittingly, a gorgeous and sunny day to celebrate Gavin.  Sesame Place was the first amusement park we ever took him to!
They were celebrating Halloween at Sesame...
...and Brian got to stop at many "Trick or Treat" stations around the park to collect fun snacks!
A lot of kids came in their costumes, but we passed on that (Brian didn't want to risk messing up his awesome costume before Halloween!) and all wore blue for Gavin.  He always looked so handsome in blue.  Even Cookie Monster was ready to celebrate Gavin's birthday!
Brian and I make great "ride buddies"...
...and he and Ed love playing games together!
Brian had fun decorating a pumpkin to bring home!
He chose a Vampire template and did such a great job.
We had funnel cake and picked out a Christmas ornament to remember the trip.  Brian picked out a toy that reminded ALL of us of Gavin - a light up spinning toy.  And then he helped me pick out a doll for his little sister - "Abbie Cadabra."  

We closed the park...
...and closed the book on another birthday without our sweet Gavin.  He was with us all day... we could feel it.
He was always able to chase the clouds away.

Happy 7th Birthday, Bugaboo.

(In other news - we celebrated Hope's 45th Saturday with us just the day before!  She's inching closer and closer to one...which is just so hard to believe!)

Tuesday, October 7, 2014


In my dream, we are sitting by Gavin's hospital bedside on a beautiful April day.  The sun streaming through the window and illuminating his five year old face creates an unlikely balance to the sounds and lights of the machines keeping him alive.

In my dream, we rise when the doctor enters the room - all of us with hopeful eyes.  He reaches out his hand and I grasp it firmly and vigorously.

"We know what Gavin needs to save his life," he offers.  I take it.  I won't let go of his hand and he doesn't try to take it back.  His words have become Gavin's lifeline.  I won't let go.

In my dream, the details don't matter.  Maybe he needs a kidney... a liver... or a heart.  Maybe he needs lungs... a pancreas... bone... veins.  It doesn't matter.  We tell the doctor we will do anything - give anything - beg people - pay people - whatever it would take, we would do anything.

In my dream, we were going to save him.

But the dream ends...and the sun goes down...and the lifeline breaks.

I imagine this scenario often.  But not for the reasons you might think.  I don't run through the story as a "woulda, coulda, shoulda" exercise.  Actually, it's quite the opposite.

Because I know that we would have gone to the ends of the Earth to save our beloved son...

Because I know that we would have been living donors for him without a second thought...

Because I know that my prayers for an organ for our child would have overshadowed my prayers for the person who might have to die to provide him with one...

Because of all of this, I can easily imagine how those who are waiting for an organ to save their life or their loved one's life must feel.  The desperation.  The clinging to hope.  The determination. Because I would have felt it, too, if there had been a chance to save Gavin.

So I sat by Gavin's hospital bedside on a beautiful April day. The sun streaming in through the window illuminating his five year old face.  My son was going to die.  There was nothing we could do to save him.

The lights and sounds of the machines that were keeping him alive became the soundtrack for my prayers.  My prayers for his peaceful departure...for his brother who will be crushed...for us as we go on without him...

...and prayers for them.

Because just as I sat by his bedside...somewhere they were sitting by a bedside, too.

The lights, the sounds, the eyes of a doctor filled with hope offering them a lifeline.

"We know what we need to save your child's life!" they hear over the machines.

A life interrupted.  A new life begun.  

All because of an illuminated five year old boy.  

Saturday, October 4, 2014

Saturday Smiles and Sighs...

It is dreary, rainy and cold morning - and I've never been happier about that.  That's because if it were sunny it would mean we'd have to cancel Gavin's birthday celebration because of me.  I have been sick with a cold all week - which was a nuisance, but life goes on.  But this morning I woke up feeling terrible with a cough.  There's no way I could have lasted walking around an amusement park all day.  We started the tradition last year on our first birthday without Gavin - his sixth.  Gavin loved rides and lights and music - and amusement parks have all of that!  So we vowed that each year we would visit an amusement park to celebrate his birthday.  Last year was Hershey Park. 
I managed to walk the entire park very pregnant with Miss Hope!  We even spent the night in a local hotel and Brian got to sleep in Gavin's special needs travel tent which was very exciting.
 Not to mention - the hotel had an indoor pool, which thrilled Brian to no end.  
So today, I am grateful for rain - but so sad that we're not going. I have my fingers crossed that the next few weekends will be sunny so we can cash in our rain check.


(Double sigh that by the time I am publishing this, the sun is shining.  I'm consoling myself by assuming that all the rides would be really wet so it's best we go another day.  Ugh.)

But, as usual in our family - smiles are not hard to find.  We're declaring today "pajama day!"  Brian and his Dad are playing a game in the playroom while Hope and I played dress up!  Today we are celebrating her 44th Saturday with us.  Here are some of my attempts to photograph our beautiful (and often serious) escape artist...
Here, Hope - hold this!  (She'll definitely be still holding something, right?)
"Ha ha - she really thinks this will work, doesn't she?"
Okay, let's try this again, Hope!
Here's a book!  (Surely this will distract her enough to sit still!)
"Did you say books, Mommy?  And can you take these ridiculously slippery shoes off of me???"
Maybe next week she'll sit and smile.  A Mommy can dream, right?

Last night we all went to Brian's school for their "Harvest Fest" and had so much fun!  Brian got to play a lot of carnival-like games - knocking down pins...
...throwing a football through the holes...
...Tic Tac Toe with bean bags and many more fun games!
After each game, he won "funny money" to purchase prizes!
It was a fun night.  We are so happy with the school we chose for Brian.  It's so fun to see him making friends and becoming so independent!  He's come a long way from this photo I took on his very first day of pre-school... now!
 We are so proud of him.

And, as if we needed more reasons to smile on a bummer of a day - Brian helped me put his sister down for a nap this afternoon by singing an original lullaby to her.  Take a listen...

Hopefully that gave you a reason to smile today, too!

Tuesday, September 30, 2014

Healing Waters...

I had a plan for Gavin's 7th birthday.  It was clear to me - and simple, really.  I was going to send Brian off to school, stay in my pajamas all day and mope.  And cry.  Cheesecake eating was optional - but likely.

But one day, while watching Hope thoroughly enjoying her bath... splashing and laughing and smiling...
...I was reminded of another little water baby of mine.  I knew what I had to do - and I knew my original plan wasn't going to cut it.
One of the last fun trips we took with Gavin was to the Adventure Aquarium in New Jersey.  He shocked us on that day.  It was crowded and chaotic, but he insisted on walking.  As Ed pushed the empty stroller, Gavin held my hands and walked almost the entire way through the aquarium.  It was incredible - and we'll never forget that day.

On Sunday, I told Brian that he wouldn't be going to school the next day... that I was taking him to the Aquarium with Hope so we could celebrate Gavin's special day.  He was so excited!
It accomplished a few things.  It got me out of the house and out of my head.  It celebrated Gavin around water, which was one of his favorite things.  And Brian and I had fun reminiscing about Gavin as we walked around.  I found myself smiling...even laughing.  A much better plan, indeed.

Here are some fun pictures of our special day...
"Mommy!  Get a picture of me showing Hope the penguins.  They are so adorable!!"
I convinced Brian to come out of his shell.  *wink*
I'm not going to lie, the day was not without some hippo sized healing tears as we remembered sweet Gavin...
...but at the end of the day, Brian declared that it was the "Best Gavin Day Ever!"
It was fitting that a birthday without Gavin was followed by a day celebrating Hope.

Our little girl is ten months today!
Ten months in and I still have - "wait, what?  I have a daughter?" moments.  She truly is the joy of our lives.  Hope is sweet, easygoing, sleeps well, eats well and is such a happy little girl.  Even better?  Brian adores her more than we ever could have predicted.  He's protective of her, loves to play with her and gets excited when she does something new.

Gavin, Brian and now Hope all have collections of Angel Dear lovies.  Brian slept with a bunch of them in his crib at all times...and he still has the same ones in his bed.  Hope is attached to hers, as well.  One of her favorite things to do in her room is to reach her arm into her crib and pull them out.
"I GOT IT!!!"
I'm still using the massage technique before introducing her to foods.  I've added Orzo Pasta, soft crackers with peanut butter, mandarin oranges, cantaloupe and today she had lentils for the first time.  They were a hit!
The last several days have been a roller coaster, emotionally.  Wanting to turn my back on everything and retreat into my own grief.  Forcing myself to leave the house and finding myself  And then spending today staring at our beautiful little girl who, just ten months ago, was dropped from Heaven.
I love getting to know this beautifully mysterious child.  She proved to us ten months ago that grief can lead you to hope even when you don't think it's possible.

If you're wondering what is going on with this blog - am I quitting, am I not? - I made a decision.  I really struggled with this, but in the end - I couldn't quit writing entirely.  It's too important to me, personally.  And I love keeping this record of my children's lives so they can look back at it one day - perhaps with their own little ones.  But, it will definitely be different.  I'm not going to pressure myself to write because I "should" or "have to" - ever.  I may write every day for a week - and then I may not write for two weeks!  Thank you for dealing with my ambivalence... and, as always, for caring about our family.

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