Thursday, October 30, 2014

Yes, I Do Do Do...

Dear Hope,

You are eleven months old today!!

You were thrilled when I introduced snacks to our photo shoot.  But one thing is true about you - it really doesn't take much to please you.  You are such a pleasant little girl - and have been from day one!
This month you have changed the most, in my eyes.  You're laughing a lot more and even playing games!  One of your favorite things to do happens when we're both on the floor playing.  You pull yourself up to stand holding onto me and then start walking around behind me while I say, "Where did Hope go?"  You make your way around to my other side and then lean your face into mine which is when I excitedly say, "There she is!!!"  And you laugh and laugh and fall in to hug me...and repeat.
You're also starting to identify things.  You have people down - you can identify all the people in your little family, granny and your aunts.  I've always been pointing out things around the house and naming them - "there's the fan"  "there's your crib"  "there are the books" - and now you're pointing them out, too!  I'm so proud of you!
The two of us are still breastfeeding, which I'm so happy about.  You eat three meals a day of solids, but I always nurse you before bed and when you wake up... and before your two naps.  You will sometimes let me know that you want to nurse other times during the day - and I am happy to oblige.  I'm so grateful that we've been able to do this for this long.  The two of us are together 99% of the time, so nursing you has never been a problem!  And in 11 months you've had only a handful of bottles - which, thankfully, you took without any complaint!
This month you were sick with Croup for a week.  It was such a bummer!!  During the day you were all smiles.  You ate well and were very playful!  But nighttime was rough.  You were uncomfortable, coughing and had painful reflux symptoms.  You've been very clingy to me - even now that you're better.  All day long you're either pulling on my leg or in my arms.  You won't hear me complain.  Well, unless I have to go to the bathroom...then it gets tricky.  Your sleeping pattern has been interrupted as well.  Lately you've been getting up 2-3 times between your 7pm bedtime and morning.  I really never mind when you wake up in the middle of the night.  I feel the same way I did when I wrote THIS post when you were just a little over a month old.
You are SO close to walking.  All you want to do all day is cruise... and I've caught you standing independently many times!  It's always by accident that you find yourself standing and not holding onto anything - and when you realize what's happening you look up at me with a very shocked look on your face as if almost to say... "how in the world am I doing this?!?"  You also love to try everything - climb the book display, climb under the coffee table, climb into the air looking for something to put your foot on... you get the idea.  The most recent bruise on your head has been carefully edited out of your 11 month photos.  But you can't edit real life...
I'm in shock that we're a month away from you turning one.  I'm pretty confident that this was the fastest year of my life!!  I've been trying to figure out what to do for your big day.  I'll probably settle on a small family party, which is just what I did for Gavin and Brian's first birthdays.  Just your Granny, Aunts, Uncles and cousins.  We'll see.  We certainly do have a lot to celebrate.
Hope, I want you to know something.  It is very hard for me to tell the story of your birth... your existence, actually!... without mentioning Gavin's death.  Just as it's hard for me to talk about Gavin's death without mentioning the miraculous gift of you!!  I want to be sensitive - and I would never want you to feel that you were overshadowed in any way by your brother's life... or death.  You two are so intertwined - it's hard to separate your stories.  I hope that you always feel him around you, because I am sure that he is - watching, protecting, comforting.
We often will say that you were sent here to heal our broken hearts.  And it's true - you have been doing that just by being here!  But you were also sent here on your own journey... to teach us new lessons.  We are your students.
Every day we get to know you more... and every day you teach us something new - about yourself, about ourselves and about slowing down and enjoying the time we have with each other.
I can't wait to see what this next month - the last "baby" month! - brings.  I'm sure you have a few surprises up your sleeve!!
Happy 11 months!
I love you, Hopi Doo!  Yes, I do do do.

Tuesday, October 28, 2014

The Tale of the Traveling Bear...

Brian and Gavin have a very special little bear.  This little bear has become the most important stuffed animal in our home.  Yes, even over Brian's vast and beloved stuffed Angry Bird collection.

Two of these bears were given to Brian by the Child Life specialist in the hospital when he came to say goodbye to Gavin.  She sweetly suggested that Brian whisper a secret into the two stuffed toys. A secret that would be shared only between him, Gavin and the two little bears.  She said to give one bear to Gavin and keep the other.  To this day, that secret remains with them.

It was hard to hold it together as Brian said goodbye to Gavin... kissed him for the last time...
...and then gave him his little bear.  
When Gavin's bear came home with us after he died, Brian was concerned that he "forgot to bring it to Heaven."  I had to explain to him a couple times that we don't bring anything with us to Heaven.  "Can you believe that in Heaven you have every single thing you'd ever want or need?  You don't need to bring toys - they have them!  You don't need to bring clothes - you don't need them!  You don't even need to bring food!" So far, Brian has been content with these answers.  Ed and I take every question as they come and we let him set the pace for information.  We've yet to explain cremation to him - where Gavin's body is hasn't seemed to cross his mind and we're not going to push it.  Perhaps the fact that he tells us he often sees Gavin (and my Dad...and my Mom-Mom and Pop-Pop) is the reason why.
I also told him that Gavin would want his special bear to be close to Brian's special bear.  We placed Gavin's bear in his memory box.  Brian's bear has lived in the "Brian-Gavin room" (Gavin's old room which Brian moved into the day he died) - or in bed with Brian - since it came home.  I'm not sure I realized just how special this little bear was until recently.

Brian and I have a strong connection with each other and he has always been very in tune with my emotions.  Gavin was the same way.  It can be a good and a bad thing!  But it definitely is one of my motivators for remaining positive...which is never a bad thing.  The last several months, though, we've been dealing with a very upsetting and difficult personal issue, on top of the usual "Gavin grief."  And Brian has been affected by it as well.  One morning, about a month ago, Brian walked downstairs carrying the little bear without saying a word.  After breakfast, before getting ready to head out to catch the bus, he walked up to me and said...

"Mommy?  I want to share my bear with you today.  I'm going to put him right here next to Gavin's picture (which sits next to my computer on the kitchen island).  If you miss me or miss Gavin today, you can look at the bear or hug it or kiss it and it will make you feel better!"
Every day - without fail - he brings that bear down for me in the morning.  And then every night he collects it and brings it back to bed with him.  It is the sweetest and most tender gesture.  He just "knows."

Several weeks ago, Ed and I went to see Theresa Caputo - the "Long Island Medium" - in a huge stadium in Philadelphia.  Of course we were going into the evening hoping and praying that we'd hear a message from Gavin.  It would have been nice to hear from any of our deceased loved ones - but we really hoped to hear from Gavin the most.  We didn't tell Brian about the show - or the medium - we just said we were going out on a date.  All day I was thinking of all the things connected to Gavin that Theresa could possibly say so I would know it was him.  I definitely thought that the numbers 5 and 7 would be what I would hear.  I was sure of it.  Five is a huge number for us.  We were married in the 5th month of May... Darcy was delivered to Heaven in the 5th month of May after 5 days of labor... I held her for 5 hours before handing her over to go to the morgue... Gavin was 5 when he died... he had a febrile seizure that stopped his heart and was pronounced dead on the 5th day.  That's a lot, isn't it?  Wow.  And 7 - Gavin would have just turned 7.  Five and Seven would have been my signs that Gavin was there.

But just before we left for the show, Brian came running over to me.

"Mommy!  Put the little bear in your purse!  Then, if you start missing Gavin or missing me, you can open your purse and see the bear there."

It was the first time the bear had left our home since we came home from the hospital.  I was stunned that he did that out of the blue.

The show started and the first two numbers out of Theresa Caputo's mouth?


The readings were for two other people - but I knew it was a sign that Gavin was there.  But my true sign that Gavin is with us all the time?  Brian.  Brian stays connected to his brother in ways that we'll probably never know.  I am sure Gavin prompted him to give me that bear to stash in my purse.  That little traveling bear was better than getting a personal reading.  I don't even know how to explain it any better than that.

What I think means the most to me is how willing Brian is to share that tiny bear.  I know how much it means to him - and it was something so personal he shared with his brother.  Yet he is so free with it - and knows just when others might need it the most.  
I am not at all ashamed to admit that I have found myself picking up that little brown bear during the day and leaving a few tears on his soft fur.  Brian was right - it really does make me feel a little better.  He is a remarkably intuitive and sensitive child.  I'm so honored I was trusted enough to be his Mom.

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!

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