Coming Home...

Right now... as I type this... I have the biggest smile on my face.  In about two hours or so, our door will open and Ed, Brian, Hope and I will be looking at my sister, Meg.  

She has been driving ALL day from New Hampshire to Pennsylvania with her suitcase and her pillow - and is staying with us this week!!!!  She is leaving her life behind to come help me... get to know Hope... make Brian's LIFE!!!... and keep me company!  I am beyond excited.  I am extremely flattered and touched.  And I am simply very grateful.  It's a big sacrifice - and I know it - and I won't take this week for granted.  Meg did this once before - when Gavin was an infant - and it meant so much to me.  She definitely makes me want to be a better Aunt.  (And she's ALWAYS made me want to be a better Mom!)  Even though she's lived in New Hampshire for over twenty years, I always say she's "coming home" when she comes our way.  I don't think that will ever change.

Speaking of "coming home..."

As promised yesterday, I wanted to share the photos we had taken at our house the day we brought Hope home from the hospital!  Many of you probably have heard of "Bella Baby" - the photography service that hospitals often use for newborn photos.  Since Hope was in the NICU, I passed on hospital pictures.  But I was communicating with a woman named Lauren Kohler Naldzin who happens to be the director of operations at Bella Baby - and she was willing to come to our home.  It may seem like a crazy time to have someone over - but I loved it.  It added a bit of fanfare and excitement to the homecoming day!  And Lauren and I hit it off right away.  More on that later.

Here are the beautiful photos she captured that day.  I love that I still had quite a pregnant belly in the photos I'm in.  I left out a select few that I might end up using for a birth announcement.  It was tough to choose favorites - and I think you'll soon see why.  

Enjoy!!

That framed painting on the shelf was made by Brian for Hope's room!

The photo below is one of my favorites.  Hope has the most beautiful feet - and toes!  And that is Brian's hand holding them.

Brian's hand, once again...

Be still, my heart.

This photo below means a lot to me.  I bought that giraffe when I was pregnant with Gavin.  It was the first thing I bought for him and it was always one of my favorite little baby toys of his... and then Brian and now, Hope.

These photos of Ed with our daughter take my breath away...

And the adorable grand finale...

That day was very special - to me AND to Lauren.  Proving that nothing is by chance, we found out that we had more in common than just a sense of humor and a love of photographs...

Lauren tragically lost her Mother when she was only six year old.  She had recently given birth to her youngest child and died in the baby's nursery in the middle of the night.  While talking about her Mother during our photo shoot - my OWN Mother realized that she knew her.  My Mother and my oldest brother actually went to Lauren's Mother's funeral.  Not only that... but her one uncle is one of my brother Mike's closest friends.  Her other uncle dated my sister, Meg, for several years and was a huge part of our family's life.  He still is!  Her other uncle took my sister, Bean, to her prom.  Her Grandmother lives in the same retirement community as my Mother.  I could go on and on, probably!  But it was in that moment that Lauren met my Mom and learned that she was at her funeral that meant a lot to her.  She told me she definitely felt there was "angel intervention" that led her to come to our house... and I believe it.

Our experience with Bella Baby - and Lauren, in particular - was wonderful.  She was very professional and really listened to what I wanted (and, more importantly, what I didn't want!).  I'm so thrilled with how these photos turned out.  If you live in my area and want to contact Lauren, you can click HERE to get to her personal website.  Or you can contact her about Bella Baby rates, specials and any other questions through her email:  lauren@bellababyphotography.com

I try not to have regrets in life... but I really do wish I had gone the professional route when Gavin and Brian were infants.  Hope's photos mean so much to me - especially because we're IN some of them!!  Thank you, Lauren, for doing such a beautiful job for our family.

Five Weeks Old...

Hope is five weeks old today!

The last week brought some challenges.  On New Year's Eve, I actually called our pediatrician in a sleep deprived, overanxious state. Hope had gone from zen baby to fussy baby and nothing was working.  Ed and I thought that she was following in her brothers' footsteps and developing either colic or reflux.  But in a weak moment, after listening to her cry and not being able to soothe her for too long, I called the doctor.  On New Year's Eve.  He calmed me down and eased my anxiety and I hung up feeling better... albeit embarrassed for panicking.  I knew just what to do - get Hope to Dr. Trish.  As soon as her office opened after the holidays, we made an appointment.  This was Hope's first joint appointment (of many, I'm sure) with her big brother... who has been seeing her regularly for months.

As many of you know, Dr. Trish - of Radiance Chiropractic Healing Center in Berwyn, PA - was a huge part of Gavin's life.  I brought Gavin to see her for quite some time - and each time she would treat him, he'd make tremendous gains. 

It's very hard for me to explain exactly what she does.  I call her an "energy healer."  She can feel what you are feeling - like an empath - and then release it for you.  She always knew what I was feeling - or Gavin or Brian and now, Hope - before I told her.  She said that before we even arrived she was feeling pressure in her head.  I had to lay Hope down on her table for the treatment and fully expected her to start to cry - as she usually does lately.  Dr. Trish put her hands on her head and she instantly fell into a calm, quiet state.  I called her the "Baby Whisperer!!"  Then, because she was actually feeling what Hope was feeling, I saw Dr. Trish shaking her head back and forth - like she was saying "no."  I didn't tell her this - but that is exactly what we see Hope doing at home!!  Dr. Trish said she released pressure in Hope's head that was likely a result of her birth - and did some other gentle adjustments (not at ALL like chiropractic if you're wondering - she barely touches you!).  With a little CranioSacral work, we have already seen a big difference in Hope!  Her excessive fussiness disappeared and her nursing improved.  She also seemed more restful and comfortable.

The next day we headed to the pediatrician for Brian's yearly physical.  He passed with flying colors!  He has maintained his percentile on the growth chart since birth (not that I care so much about the growth chart).  He's 42 1/8 inches tall which puts him in the 25-50th percentile... and 41 pounds which has him in the 50-75th percentile.  While we were there, we weighed Hope.  Guess who had a major gain??  She's now 7lbs, 10oz!!

She is really filling out, as you can see in her five week photos!

Monday is Ed's 43rd birthday.  Last year for his birthday, the four of us went to see Disney on Ice and had such a great time.

This year I surprised Ed and Brian with VIP tickets to go together - a "Love Bomb" day that was "Boys Only."  And, to represent Gavin on the trip, Brian wore his Super G shirt under his sweater.  He was VERY excited to go out with his Daddy!

Ed captured some pictures for me...

...and they had lots of fun stories to tell me when they got home!

Meanwhile, Hope and I spent the morning in a friend's photography studio!  We had a fun Mother -Daughter photo shoot, and got some newborn shots of just Hope as well.

She was quite an agreeable model.  I can't wait to share these photos when I get them!  

This is the second set of professional photographs I've had taken of Hope, believe it or not!!  I wish I had gone the professional route with the boys - but I took all the photos myself (and you can tell!).  I was quite the rookie back then and their photos aren't as nice as I would have liked.  The first set of photos I had taken of Hope was actually on her homecoming day from the hospital when she was just four days old! (Way back when - ha!) I plan to share them tomorrow - so bring your tissues and prepare yourself for overwhelming sweetness.

In The Moonlight...

I feel his presence the most in the dark of night.  As I sit in bed and stare at her beautiful face, illuminated by the moon streaming in through my window - it's as if I'm looking at him once again.

In those moments, it's just the three of us.  I know he's there.  In every whispered promise to her... in every pat or stroke of the hair... in every hush.

I spend these precious, sleepless moments quietly telling her who I am - who he was - and promising her I will love who she will become.  I tell her how happy we are that she's here.  How she was a wonderful heavenly surprise.

As the hours tick by and the rest of the house is asleep, I beg the sun to delay rising.  Because it's in the dark when I feel him the most.  And I know when the sun rises... and the day begins... he will go.

So I use this time to feel connected to my daughter and my son.  I whisper stories about him... tell her how much he loves her... and I softly sing the lullabies that I once sung to him in the moonlight.

 I would lay with Gavin and sing one song in particular over and over... as if it was "our song."  The words had meaning then... and still do.  A radio station in Gavin's hospital room happened to play this song while he lay dying - like a gift to me from above.

So now, I whisper the song softly to Hope in the dark of night until I hear her breathing slow and her body relax.  Somehow, the words mean even more.

But everything means more in the moonlight.  So I once again beg the sun to wait a while.  Just a little while more.  And as I wipe my tear from my little girl's cheek, I thank God for the promise of hope.

never thought that in a million years

never thought that you would come to me 

you're the answers to a million prayers.

you're the apple of my eye.

i can hear you breathing next to me.

just how lucky can one person be?

i am looking at a mystery

everything i dream, more than i can wish for. 

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

baby you're my little ray of light

i could find you in the darkest nights

if you cry then i will hold you tight

never letting go, i would do that for you. 

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

baby i am here

baby i am here

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

The Year We Lost Gavin and Gained Hope - 2013 Year in Review...

This past year has been a series of intense highs and even more intense lows, as you know.  And you've been here each step of the way.  Whether you're a long time reader...or one that joined us after the death of our son...thank you.  Your daily presence means a lot to our family.

Last year I posted the "Top Ten Moments to Remember From 2012."

This year?  Honestly, I could have posted fifty.  I settled for twenty.  I give you, The Top Twenty Moments to Remember from 2013."  Click any of the links to go right back to that day!

#20
Brian's Speech Explosion!

Brian was "diagnosed" with a speech delay when he was three.  I wrote this post a year and a half later. It didn't take that long for him to start talking - it was just that he wouldn't stop.  And I loved every minute of it.  (Well, maybe... you'll see.)

#19
Gavin's Trip To Children's National Medical Center

Gavin had genetic testing that came back saying he could possibly have Merosin Deficient Muscular Dystrophy.  We were crushed.  The typical way to confirm the diagnosis is through a sedated muscle biopsy - something I wished to avoid.  I was THRILLED when I was able to get Gavin in to see a world renowned expert in this rare form of MD - Carsten Bönnemann.  This post is about our trip - during the presidential inauguration - to see him at Children's National Medical Center in Washington, D.C..  Ed, Gavin and I made an overnight trip out of it and had a lot of fun staying in a hotel.  You can read about the outcome in this post.

#18
The Sale of my Childhood Home

I had SO much to say about the only home I knew my entire life.  If those walls could speak.  As much as I loved that house - the home is wherever my Mom is.  And the memories from my life there will never leave me.



#17
Miss Sara Resigns

We knew the day would come when Sara would need to move on.  She was graduating from a Masters program - and heading into an MBA program (clearly an underachiever!) - and was needing to complete an internship.  Her letter of resignation brought us to tears.  Lucky for all of us that she gave us tons of notice and was still working with us the day Gavin had his seizure and cardiac arrest.  I don't even want to think about what that day would have been like if I had been alone with both boys when this happened.


#16
Gavin's 5K Day!

One of my favorite days was Gavin's big finish to a 5K goal set for him by his physical therapist, Miss Wendy, and Miss Sara. The principal of his school vowed that she would bring all the kids into the hallway to celebrate when he crossed the finish line... and she kept her word.  Gavin's accomplishment was truly celebrated that day and it was hard to hold back the tears.



#15
Using Parents Magazine to Get More Eyes on Gavin

I was shocked - and very flattered - to be nominated by Parents Magazine's blog contest in the category, "Blog Most Likely To Have You Reaching For Your Tissues."  (And that was before things got really sad in our life!!)  I never expected that I would even come close to winning, so I decided to use the extra exposure to possibly find a diagnosis for Gavin.  The outpouring of mail and support and suggestions I received was incredible and I was so grateful.


#14
Brian Was Star of the Week!

This post is all about Brian.  He was "star of the week" at school... but the post is really about how he shines at home. And it highlights the bond between him and Gavin.


#13
Our Nephew, Dan, Got Married AND Had His First Kiss 

A Must Read.
I love my nephew, Dan.  I loved his wedding.  And I love this story.  I bet you will, too.


#12
The Ups and Downs of Blogging

I love writing - and this "journal" has always been my way of chronicling our life... keeping track of every milestone and event... sharing things I've learned that have helped us in hopes of helping others... and, to be honest, a therapy tool. For me.  Mentally.  But boy - blogging can suck sometimes because of people who like to start stuff for no reason.  Ugh.


#11
Gavin's Independent Connection With A Communication Device!

Just ten days before he died, Gavin had a major breakthrough and it was caught on video - thank God.


#10
The Day Gavin Died

In one day, my son died... I turned 43... and I knew I was pregnant.


#9
The Day I Told My Story To The World

When Glennon Melton asked me to write my "MamaStory" for her blog, "Momastery," I was honored.  I decided that this was the time to bravely reveal it all.  Come out of the closet, so to speak.  I wrote it and submitted it to her long before Gavin died.  She was concerned about posting it once Gavin tragically died... but I gave her the go ahead after I amended the ending.  I wanted to show people that no matter how many times you're knocked down - it's possible to keep getting up.


#8
Revealing My Surprise

One of the hardest secrets to keep.

#7
Gavin's Trust Project

I liked thinking that through my writing - and sharing things we learned along the way - that I was helping other parents, teachers and therapists to help the "Gavins" in their lives. Then Gavin died.  I won't be able to write about his progress anymore - but through this project I sure as hell can help other "Gavins" get the tools they need to make superhero strides!!  I continue to be overwhelmed with people's generosity and enthusiasm for this project.  It is near and dear to my heart.


#6
Gavin's Pier

The day a reader helped us fulfill our wish of scattering some of Gavin's ashes from a Private Pier in Ocean City, NJ.  The Pier is on the beach where all of our oceanside memories were made with Gavin and we wanted to leave part of him there.  It was truly his favorite place.  I was never more grateful for my blog and my loving readers than I was on this day.


#5
Realizing I Underestimated Their Bond

I thought I knew - I thought I got it - but once Gavin died, it was clearly revealed.


#4
Brian's First Day At His New School

"Maybe you're thinking... 'This is pretty dramatic for a "First Day of School" post.'  And maybe it does seem that way.  But from where I sit - today symbolized so much more."


#3
Celebrating Gavin's 6th Birthday

Knowing this day would be very hard on our hearts, we decided to celebrate what would have been Gavin's sixth birthday in a special way - and start a yearly tradition at the same time.



#2
The Birth of Hope

Arriving one month and two days before her due date, our angel was dropped from Heaven and changed our world.


#1
Brian Turns Five

Brian begins his fifth year... the year his brother didn't complete.  He continues to sleep in Gavin's bed, ask for the story of the day he died ever night at bedtime and sings Gavin's favorite songs to his little sister.  In many ways, Brian is the rock in our family.  We love this child so much!!  


I can't predict what 2014 has in store for our family.  All I know is this:  I will keep showing up and sharing our life.  I refuse to let our story be categorized as one of sadness and tragedy.  Our story is so much more.  It's a story of possibilities... never giving up... overcoming... and never losing hope.

Welcome to the year of hope.  I'm glad you're here... and I thank you, from the bottom of my heart, for loving our family through the hardest year of our life in 2013.

Happy New Year to each and every one of you - wherever you are in the world.  We are all connected now by this little boy who changed a little bit in all of us for the better.