Tuesday, November 25, 2014

Thankful...

It has been a whirlwind week and a half around here!  Last week it was just me and the kids while Ed was away in sunny Los Angeles for work.  We made out just fine - but whenever Ed is traveling I am definitely reminded just how much he does around here!  He's a real hands-on Dad.

While he was gone, I was hard at work getting the Christmas decorations out and displayed.  I love Christmas.  And Gavin loved the Christmas decorations so much - especially the lights.  I would put it all up early mainly for him - so he could enjoy it longer.  Now that he's gone, I will likely continue that tradition... like a little wink to him in Heaven.  I put up the tree, the lights and my homemade banister garland (I went nuts with a glue gun a couple years before Gavin was born).
Brian and I were excited for Ed to get home from his trip so we could put up all of our special ornaments together.

But first - we took a little road trip!  The four of us drove to New Jersey - stayed in a hotel, which is always a ton of fun for Brian - and went to an Aquarium.  
Brian had a lot of fun - at the aquarium and the hotel.  Hope loved the aquarium - but the hotel... not so much.  Little Miss Mobile was not happy that I wouldn't let her crawl around on the floor in our room.  I'm sorry, but I've seen too many exposés about how dirty and germy hotels are!  Thankfully for all of us, it was a short little trip.
Hope was much happier at home - and even helped us decorate the tree!  
Kinda.  After snacking on some styrofoam.
Brian did most of the ornaments this year!
  It was heartwarming to hear his comments along the way.  "Aww, look -it's Gavin's ornament.  We'll remember him every Christmas!"
"Awww, my pirate ship.  And the lighthouse that we climbed, Mommy!"
I love, love, love our personal tree.  Every ornament has a history - and some ornaments are from my own childhood so I guess they would be considered "ancient history!"  Ha!
Brian even included Hope - showing her some of his favorite ornaments along the way.
It was fun to finish the tree as a family.
Here's the final result!  If you're curious about our angel tree topper, she has a very special story.  I had it custom made after Gavin died.  You can read all about it in THIS post.
I didn't intend to decorate outside the house, but yesterday was a shocking 70 degrees here in Pennsylvania!  Hope and I spent all morning outside putting the lights up.  She loved sitting in her stroller watching me get all tangled up in strings and strings of lights.  And every time the wind would blow across her face, she would laugh and laugh and laugh.  Putting up Christmas lights this year was definitely not a chore, thanks to her.  When Brian got home from school he spent some time playing outside with his friend, Daniel, on our playground.
And when it started to get dark, we took a trip up the driveway for a look at our hard work.  I won't put the lights on and leave them on until after Thanksgiving.  But it feels good to have it all done!  Now I can get through Hope's first birthday - Brian's birthday - and the lead up to Christmas with less stress.  Well... in theory.
We do have a little stressful situation on the horizon.  The company that Ed works for, Shire, recently announced that they are relocating their headquarters to Lexington, Massachusetts.  Employees, including Ed, have to choose to either relocate or take a severance package.  This is not something we take lightly.  If our situation was different - it would be an easier decision.  But since Gavin died our biggest priority and main focus has been Brian.  He's had a lot of life changes.  We may not be able to avoid piling on another one - and we'll have to hope that he'll show the same adaptability and resilience he's shown over the last year and a half - actually, over his entire short life when I think about it!  If you could send some positive energy our way - especially for clarity! - we'd appreciate it.

This new development hasn't rattled us too, too much.  Obviously, we've endured far worse.  And we remember that we really have much to be thankful for.

Brian is happy and maturing and learning more and more every day.
And Hope is sweet and easygoing and boy, is she determined!  She started crawling like this today...
...and she even got herself up to stand all by herself!  No walking yet - but it's soon!  (I know - I've been saying that for months.  But I really mean it this time!)
And then there's Gavin... who has never really left us.  He continues to remind us of what's really important in life.  It's not the turkey dinner... it's not the stuff we have... it's nothing tangible at all.  

This year we are thankful for time - which is never promised.
And for love - that never dies.
From our family to each and every one of you - Happy Thanksgiving.
I am personally thankful for the love you send our way.  It means so much to me.

(p.s. - Don't forget to join in the worldwide celebration for Hope's first birthday!  You can read more about how you can participate HERE.)


Thursday, November 20, 2014

Countdown To One!!...

I have something very exciting to share with you!  The countdown to Hope's first birthday is on.  It's hard to believe that ten days from today is her big day!  I will be posting her monthly pictures all week on the Chasing Rainbows Facebook Page for the "Countdown to One."  Here are her one month...
...and two month photos.
For the past several weeks, I have been receiving lots of mail from readers hoping to send Hope a first birthday gift or card.  This does not surprise me at all because I have always said I have the most thoughtful readers on the internet.  It's so sweet - and humbling - that you're always thinking of our little family.  As a rule, we don't accept gifts - but we appreciate the gesture so much!!  I have been giving those requests a lot of thought, though, and I've come up with a genius plan!!!!!

We can ALL come together to celebrate Hope and, at the same time, SPREAD hope to many!!

I came up with "Give ONE to Celebrate ONE!"
You can read all the details - the hows and the whys and the wheres and the whens HERE on the YouCaring Page I set up.  But basically - here's the deal:

We lost Gavin.
In preparing to donate his organs - we realized we had a baby.  Hope in my belly, as I like to call those early days before we knew she was a she.
In the midst of our sorrow - we had hope.
I feel like sharing her since the day I announced it here has spread hope to many of you.
So, to celebrate the gift OF her life... the gift TO Brian and Ed and my lives... and the ultimate gift OF Gavin's life - we can "pay it forward" by spreading hope even further.

You are welcome to donate as much as you want, but I thought if many people came together from all over the world and each donated $1.00 (Well, Pay Pal takes 33 cents from each dollar for credit card fees - so a dollar donation would really come to 67 cents.  If you give $2.00 it will come down to $1.64, though!) - we would show just how far a dollar donation can go!  I've chosen five particular charities (five for a sentimental reason) - if we raise $1,000, it will all go to the first charity.  More than $1,000 - we go on to charity 2.  And so on.

I know it's right before the holidays, but most of us have $1.33 that we can spare.  It sounds like such a small amount - but when we all come together, it's amazing what can happen.

Thank you for loving our daughter during her first year.  As any proud Mom, I have smiled - beamed, really - with each and every comment whenever I post a photo of her.  She has been a joy this year - but the real joy has been watching how loving Brian has been to her.  How attached he has become - from day one.  Of everyone in this story - it was Brian who needed Hope the most.
He is very excited about this project - which will end on his 6th birthday, December 16th!!  Please share the YouCaring page with your friends and on social media.  You can copy and paste this link wherever you want:

https://www.youcaring.com/GiveONEtoCelebrateONE


 I hope we can make this a very hope-filled holiday for all that will benefit from our dollars!

****************
Now.... on to the other business at hand.  Catching up!  Want to know how I spend most of my days?  Getting pretty much "nothing" done... but getting the most important things accomplished.  I may forget the practical stuff - like when I need to run to the grocery store or taking the wash out of the dryer or even - gulp - forgetting to send Brian in with his snack. (That was a sad day in our house.  I made up for it by sharing giant soft pretzels on the couch reading books together.) 
But I feel like I accomplish everything when I collapse into bed at night and reflect back on the day.  I may have read another three exciting chapters in a Magic Tree House book with Brian... or sat and played with Hope on the floor... or played yet another rousing game of "Star Wars guys that chase each other" with Brian (don't ask - I still am pretty unclear myself)... or patterned "Sooooo Big!" 40 times for a very disinterested Hope.  

The point is, nothing else really seems that important most days.  I just love to be with my kids.  And, lucky for me, they love to be with each other.
  I have fallen into a bad habit, though.  I have been snapping the majority of my photos with my iPhone.  Don't get me wrong - iPhones take nice pictures!  But my camera takes much nicer pics and I really should be using it more.  Sometimes when you have an iPhone picture printed to put in a frame, the quality doesn't look the same.  I also haven't been taking as many pictures as I used to - or videos!  At this moment, there are less photos and videos of Hope than there were of the boys when they were her age.  I'm sure you find that hard to believe - but it's true!!  I need to snap out of this!!

I will admit, it is easier to carry the phone around in my pocket so I'm ready to capture simple moments when they happen.  Like blanket forts in the kitchen...
Or Hope meeting Gavin's Christmas Elmo for the first time.
(She's in love)
A bedtime hug-fest.
Or Hope standing independently.  Brian has been obsessed with capturing Hope standing and actually quickly grabbed my phone to take this picture himself!!!  Not bad, eh?
The other day, Hope and I met Granny at our local Mall to have lunch and do a little shopping.  Hope was fashionably dressed for the occasion.  (Mommy - not so much.  Ha!)
(You can almost see her top tooth in this picture - it broke through this week!)

I found the perfect dress for Hope's first birthday pictures - and for her princess birthday party next Sunday!!  I wish I could show it to you - but I have to leave SOME things as a surprise.  I didn't buy this little hat...
...but I was tempted!!

I'm not a big fashion person - or even a lover of shopping - but I can spend HOURS looking at baby and kid clothes.  It's a sickness.  Hopefully one with no cure.

Don't forget the "Give One to Celebrate One" project!!  And thank you, as always, for caring about our little family.

(p.s. - please know that I NEVER ask anyone to fundraise on our behalf.  If anyone tells you they are raising money - by having a Tupperware Party or a makeup party or a lemonade stand - beware.  You will only hear from ME for any fundraising projects!)


Wednesday, November 12, 2014

The Most Important Work I Will Ever Do...

Something pretty amazing took place this past Monday evening that I am so excited to share with you.  I'm excited because, despite how it may seem in this post, the "something" that happened didn't just happen to me.  Or our family.  It happened to all of us.  That means you.

As you know, I have been rather passionate about specific charities and causes over the last 18 months since Gavin died.  And you, my dear readers and friends, have been a big part of that. Together, we raised...

$64, 953.04 for "Gavin's Playground Project."

Over $25,000 for "Gavin's Trust Project."

Over $7,000 and boxes upon boxes upon boxes of toys, art supplies, musical instruments, books and more to duPont Hospital's Child Life Department.

Over $30,000 to the Gift of Life Family House which allowed a guest room to be dedicated to Gavin, a plaque in his honor in the entry way and a stone in the memorial garden - all celebrating the gift of his organ donation.

Enough money to fill the Paoli Hospital Emergency Room's children's waiting room with toys.  (This is where Gavin was born and where he was on April 10th when he suffered cardiac arrest after a febrile seizure...leading to his death 4 days later.)

$1,537 to CaringBridge, the website where I got my start writing about Gavin when he was an infant.

That's a lot of love.  A lot of money.  And a lot of tributes to Gavin's 5 1/2 year journey.  

Ed and I attended a gala this past Saturday night.  It was organized by a fellow duPont Mom, Kristen, who lost her child, Molly, and created the "Miracles for Molly" foundation to honor her life.  Her newest project is to raise money for a sibling bereavement camp for kids, like Brian, who lost a sibling at duPont.  It will be a few years until Brian is old enough to attend, but Ed and I are so supportive of this wonderful idea.  The evening was called "The Art of Living Gala" and Kristen did an incredible job, raising over $20,000!  She asked if she could borrow some of Gavin and Brian's art to hang in the venue, which was an art gallery.  I was happy to help.  Here is their art and what I wrote about each piece and their sibling bond.

There was an auction and Ed and I immediately decided to bid on a HUGE basket put together by "TheraPlay."  It was filled with all kinds of art supplies, paints, construction paper, etc... and a certificate for free therapy services.  We were determined to win this so we could donate it to Gavin's former classroom.  We knew they would put all of it - but especially the free therapy for a family who needed it - to good use.

Just today, Hope and I took a little ride over to Gavin's old school to visit his classroom and deliver the basket.  

I found out that one of Gavin's friends just recently benefitted from Gavin's Trust Project! She tried out a Rodi Horse one day and the teachers and therapists saw how relaxed her muscles were and how it helped her to engage more than ever in the floor activities in the classroom.  Money from Gavin's Trust Project was able to purchase one for her parents to use with her at home!  Hearing that really made my day - and made me feel so, so grateful.

So, back to Monday evening.  You might want to pull up a chair and grab a snack.

This year, unbeknownst to us, Ed and I became members of the Nemours Society based on personal donations that we made to the hospital.  Each year they hold a very fancy reception for the members to thank them for their donations, and we were invited.  It felt uncomfortable to be "honored" just for donating. But then it got even more uncomfortable when the hospital asked me to be the evening's speaker!  WHAT?!?  I am truly not a public speaker.  If you've heard me stumble through a speech, you're probably nodding and going "hmm mmm!" right now.  I had no idea what I would say.  My hospital friend told me that I could just tell our story - and explain why I wanted to fundraise.  But to explain why and how I fundraised to a room filled with expert donors seemed...silly.  But then - on the afternoon of the event - my speech finally came to me. Just because there were many huge donors in the room didn't mean I couldn't explain to them how their large donations trickled down to help in small ways which, in turn, made a HUGE impact on our little family.  Someone might have given a large donation for medical research or for the hospital expansion or maybe even new, state of the art equipment.  But as it is with any donation, big or small, there's a ripple effect.

Ed and I enjoyed mingling at the event and meeting new people and seeing old friends.  We were thrilled to see Gavin's eye surgeon, who we love so, so much - Dr. Sharon Lehman.
(All event photos were taken by Adam John Photography)

Two important members of the hospital's leadership team spoke before me.  Dr. Roy Proujansky, who is the Chief Executive and Executive Vice President of Nemours.  He has become a friend over the years.  He would often pop in to say hi if he knew that Gavin was inpatient... and he was very supportive during the four days we were there saying goodbye to our little boy.
And next was Dr. David Bailey, Chief Executive Officer of Nemours. He is the one I approached about the playground initially and he gave me his blessing and support to go public with my plea and hold a fundraiser.
Here was my speech that evening.  Be sure to make it through to the next part of the evening after my speech - that's where you come in.
**********************
Thank you so much for inviting me to speak to you tonight.  As always, it’s a great honor for me to be of service in any way to the hospital we love so dearly.

When my husband, Ed, and I found out that we were considered part of the Nemours Society because of a donation we made - we were very flattered.  We had never heard of the Nemours Society and certainly didn’t give our money for any type of recognition.  We donated for two reasons - and two reasons alone.

One - we feel very passionate about a large project. An accessible playground. The children inside the hospital or who come to the hospital for treatment and therapy deserve to have a playground that was built just with them in mind and I intended to help make that happen.  After getting a yes from the executives to go ahead, I had a fundraiser that brought in a little over $63,000. Surely not enough to fully fund the playground - but a great start.  So next time you’re looking to funnel your dollars into a particular project, please remember the accessible playground.  Wheelchairs don’t glide over mulch - or climb stairs - and these children are waiting patiently inside watching from the windows waiting for grown ups to make the changes necessary so they can do their job: play.

But, the other - and really most important - reason why we gave our money to the hospital was to thank them... and to thank other donors, like all of you.

Our first son, Gavin, was born slightly premature in 2007.  He was born with very low tone and had some feeding difficulties as a result.  When he was two months old, he contracted RSV which landed us at a local hospital for two weeks.  When he wasn’t getting well, they transferred him to Nemours.  It turned out that he had infantile botulism on top of the RSV - practically paralyzing him.  I lived next to his hospital crib for close to three months.  And we would continue to come back to the hospital for years for various reasons.  I was always comforted that we were bringing our child to an outstanding hospital and he was getting excellent medical attention.  But I’m the type of person that pays attention to and is grateful for little things.  And over the years it was apparent to me that the little things along the way were made possible by donations.  And those little things...made the biggest impact on our lives.

You may or may not know that I write a blog called “Chasing Rainbows.”  It is about Gavin and our journey with him - and about our family adventures.  That blog reaches millions of people from all over the world.  It is because of my readers that I was able to raise $63,000 for the playground.  Donations came in from Australia and Greece - Paris, France and Paris, Texas - and most were in small denominations.  $5.00 - $10.00 - $20.00.  I’ve been able to write about things we’ve done to help Gavin - different therapies, alternative treatments, equipment we got for him - and it’s reached others who, in turn, were able to help their own children with some of those very ideas.  The blog has been my therapy over these past six years - giving me an outlet to express my frustrations, grief, joy and gratitude.  But what you don’t know is that writing online probably would have never happened if it weren’t for Nemours.  During the first week of our long stay there, a volunteer knocked on the door and asked if I’d like to borrow a laptop.  BORROW A LAPTOP!  What?!?!?  There were no iPhones at the time - and I didn’t have a computer - all I had was a phone to call family and friends to update them on Gavin’s condition.  That laptop - surely made possible by donations - was my lifeline.  And, in turn, my blog has become a lifeline to many others.

The ripples continue...

Little things during Gavin’s long hospitalization made a big difference to me.  The free tea each morning off the volunteer cart.  The free washer and dryer in the Family Resource Center.  Borrowed Baby Einstein movies from Child Life.  These little amenities during a very stressful and lonely time made a huge impact.

But the biggest impact on our lives was yet to be seen.

I’ve been accused over the years of being a “helicopter Mom” which I take great offense to.  I really considered myself more of a “hovercraft Mom” - they get a lot closer.  Until DRONES came along!  They get close AND take pictures - perfect.  So it was on a beautiful April day that this drone Mom took Gavin to a local emergency room because he was snuggly.  Snuggly!  Having taken his first steps just a few months before, Gavin was unstoppable.  He had no time to snuggle.  So it tripped off my radar and off we went.  Even I knew I was overreacting... but now, looking back, I realize I was guided.  For it was in that emergency room that Gavin had a febrile seizure that stopped his heart.  As I stood shaking and helpless in the corner of that room - watching strangers surround my little boy, trying to breathe and pump life back into his five year old body - I had two prayers.

One - Please, God, let him live.
and
Two - Please, God - just get him to duPont.

When the helicopter arrived and the pilot took both of my arms and said, “Maam - I don’t let people die on my chopper” I felt like I could breathe.  All I wanted was for Gavin to get to the hospital that had cared for us like family for the last five years.

It quickly became apparent, after a few more major cardiac events, that Gavin would not live.  Because of donations from people like all of you, the four final days we had with Gavin were beautiful.  

As you know, the child life department depends on donations of dollars and supplies.  The things, books and ideas they shared with us - have shaped our grief journey in the most positive way.

We knew we would donate Gavin’s organs.  I asked the Child Life department to help me make a sign that we could attach to the foot of Gavin’s bed.  They used their supplies - all donated, I’m sure - to make exactly what I wanted.  It had a little flying superhero and it read “Superhero Gavin, Off to Save Lives.”  A photo of Gavin that I took being wheeled into the OR for the organ harvest has been seen all over the world by millions.  Thousands of people have written to me since that day to say they were inspired to either become an organ donor - or start a conversation in their house about donating their child’s organs should the unthinkable happen.

So let’s recap:  because of donations I was lent a laptop which allowed me to write about our story.  Readers, in turn, donated over $63,000 for the playground... over $10,000 and hundreds of supplies to the Child Life Department in lieu of funeral flowers... and became inspired to become organ donors because of a sign and a story.

And the ripples continue...

When we brought Gavin’s then four year old brother, Brian, to the hospital to say goodbye to his best friend - it was Child Life that helped all of us through that dreadful day.


Jenn from Child Life started by explaining to Brian that Gavin was going to die.  She said that before we all went in to see him, she wanted to give him two little bears.  One would be for Gavin - and one would be for him.  She told him to whisper a wish into the bear - and then whisper the same wish into Gavin’s ear - and that wish would always remain a secret between Gavin, Brian and their bears.

She also gave Brian a book called “The Invisible String” that talked about how there is an invisible string that connects all of us and it never breaks - even when someone dies.  If you’re ever missing someone - wherever they are - you could tug on your invisible string and it will bring them closer to you.  Then she brought out a clear plastic heart that opened - and glittery plastic gems for Brian to fill the inside.  She attached a clear stretchy string so Brian could hang the heart on something when he got home.  Jenn suggested that Brian could tug on this tangible heart hanging by an “invisible string” each time he missed his big brother.

Brian moved into Gavin’s room when he died.  That invisible string and the plastic heart has hung on the closet door since.  And every night, as a family, we each pull the string to say goodnight to Gavin and tell him something about our day.

That little brown bear?  It sleeps with Brian every night.  He never told us the secret that he whispered in its ear - and I hope he never does.  But he does share the bear.  The second year without Gavin has been harder than the first, I’m finding.  Although I don’t show it outwardly (at least I don’t think I do), Brian seems to know just what I need.  One day he brought the bear down in the morning and placed it next to Gavin’s picture on my desk.  “Here Mommy - you can have my bear today.  So in case you miss Gavin or miss me, you can look at it or hug it or give it a kiss and it will make you feel better!  But I’ll need it back at bedtime.”  He’s continued to do this every day since for the last several months.

If you could see this bear - picture the cheap stuffed toys you pull out of those big claw machines?  It’s like that.  Honestly, a thousand dollar donation could probably buy 3,000 of these bears.  And I bet it would buy the same amount of plastic hearts.  But I’ll tell you what - the bear and the plastic heart are two of the most valuable items in our home.  I would grab them in a fire.  

And the ripples will continue.  Brian can one day read “The Invisible String” book and explain the bear to his little sister, Hope, who surprised us with her existence the very day that Gavin died...and was born 7 months later.

I know that we were invited here tonight - all of us - so the hospital might thank us for our donations.  But I really feel that I am here to thank them - for caring for our family since the day we walked in with our infant son.  And to thank all of you -  because your donations, whether it was one time or many over the years, trickled down and profoundly affected and changed our lives.

Thank you again for having me.  And perhaps one day I will see all of you again on the brand new playground!  (What can I say - I’m not one for subtlety)  

**************************
After I was done speaking and shaking, the Operational Vice President of the Nemours Fund for Children's Health, Lori Counts, came up to the podium to wrap up the event with a few words.  Here are some of her remarks...

"Thank you, Kate.  Thank you for sharing your story.  We are so sorry for your loss.  We feel a part of your pain, but also a part of your happiness and hope.  That's how it feels to be part of Nemours - you feel a part of the families that are here every day, sharing their highs and their lows, their laughs and their tears.  And you never really let go of those families or their stories.  They stay with you.

Now we come to one of my favorite parts of this annual event - the presentation of The Inspiration Award.  This honor is given to an individual who personifies philanthropy:  generosity, willingness to approach others to join them in giving, and a commitment to the community.

Tonight we recognize someone who has truly touched our hearts and who has been an amazing advocate for children and for Nemours.

The Nemours Fund for Children's Health is delighted to present this year's Inspiration Award to Kate Leong.
Kate was extremely modest in telling her story.  But in a moment when everyone would have understood if she took "time off" or if she emotionally retreated, she continued to advocate for children and for the hospital.  Her goal is to fund an "All Abilities Playground" at the hospital, where all children would be able to play.  Through a special event and outstanding outreach, Kate, her husband, Ed, and her family raised more than $60,000 for this new project!

Kate shares her story whenever she has the chance, trying to support and help other families who are having similar experiences.  She has assisted with the past two Radiothons, which is one of our largest fundraising events each year.  She is always looking for ways to improve the patient experience here at the hospital, where she spent so many days with her son.

In addition, Kate and Ed are members of The Nemours Society."

And then she said she knew it had taken me by surprise (that would be a GINORMOUS understatement - I was stunned.  Completely, utterly, overwhelmingly stunned.) and asked if I wanted to - gulp - "say a few words."

I truly was speechless and, in typical fashion, had to make a joke "thanking the academy and my family and my agent..." so I could gather my thoughts while they laughed.  I think they laughed. God, I hope they laughed.
I know I said at least ten times that I felt the award was so unnecessary.  It didn't feel like it belonged to me.  The true recipient of the Inspiration Award is Gavin.  He is behind all of this.  And all of you, because... well, I'm getting to that.

The actual award is a bronze sculpture they had commissioned of a child releasing a butterfly - and it is stunning.  And extremely symbolic.  The child signifies the pediatric mission of Nemours and the butterfly symbolizes change, freedom from disabling conditions... and hope.
After I stumbled through my thank you, the evening ended.  As I stood there, person after person waited to talk to and congratulate me.  
More importantly, many asked how they could help to get the playground project completed.  I directed them to the folks in fund development who are handling the whole process (which is still in planning mode) - but I can't wait to hear if anything comes of all the interest!!

Driving home, I was still in shock.  Ed and I talked about it the whole hour drive.  

You know, I really do feel like this award was unnecessary.  When I looked up the past recipients I was stunned - and so, incredibly honored to be in their company.  I'm just shocked that they chose me.  But I can't lie - as I look at the award, which now has a home on the mantle... right next to Gavin's beautiful urn - it is suddenly so important to me.
Every time I look at it, I remember who it's really for - my family and all of you.

If it weren't for all of you, there is no way I could have raised all of that money for those charities and causes.  Just no way.  You have been so generous with your donations and have trusted me - a total stranger - which means so much.

But even if you never donated a dollar, but still came here to read and cry and celebrate and encourage - I want you to know that that means just as much.  You might think I am here to help and inspire others to get through tough times... but many, many times I have leaned on all of you.  And you've always been there.  I've said this before - and I don't mean any disrespect - but I really thought readers would drift away after Gavin's funeral was over.  Or maybe even after Hope was born.  But you just keep coming back.  I feel so connected to all of you and I'm so grateful that you've connected with my little family.  This Inspiration Award is partly dedicated to each and every one of you.

I know my Dad would be very proud of me in this moment.  Proud of how I've handled Gavin's death and proud of how Ed and I have handled Brian's grief and proud of all the philanthropy.  My Dad was always generous with everything - time, money, resources, advice, positive encouragement and love. He was so humble his whole life - never wanting recognition for things.  

This is how I want to raise our children.  I want them to be generous without looking for anything in return.  I want to one day explain why Mommy got this award and tell them that it symbolizes that you can do really difficult things even when things are really difficult for you.  And that, no matter what you do in life - how big your accomplishments are - how much money you make and how many awards you receive - your biggest rewards will come from inside your own home.  They are the people you should look to impress the most.  They are the people from whom you should draw your inspiration.  Being a Mom is the most important work I will ever do.

Gavin... this is all for you.  My promise to you, every day, is that I will continue to honor your life by setting a good example for and being a good Mommy to your brother and sister.  I'm trying my best, buddy.
  

Sunday, November 9, 2014

Our Little Pumpkins...

I am a big fan of celebrating "firsts" in this family and I love to document all of them with photos and stories.  Gavin's first balloon.  His first time in a pool.  His first time feeling the grass.  Brian's first hair wash in the sink.  His first time holding a toy by himself.  The silliest stuff - which I always felt was really the most important stuff.  All of these little firsts were like gifts to me.  I was watching these little people emerge before my eyes - and I was so excited that I got to be a witness to the experiences that would shape and define them.  Sounds dramatic, yes?  But it's truly how I feel!  I cherish every little thing.  Even the "lasts" - Gavin's last moments with his brother.  His last bath.  His last time in our arms.

Going to the Pumpkin Patch has always been one of my favorite (and emotional!) firsts.  I remember vividly our first trip with Gavin.  
He was born with low tone, but then a rare and serious bout with botulism (we have no idea to this day how he contracted infantile botulism) and RSV at the same time practically paralyzed him.  His low tone became extremely low tone and it took a very, very long time for him to even sit up alone.  I was pregnant with Brian (and emotional) when we brought Gavin for his first trip to the pumpkin patch.  I had always dreamed of a "baby in the pumpkins" photo.  As other parents all around me were propping up their babies and snapping their pictures, I was trying and trying and trying to position Gavin.  It was early on in our unexpected journey with his complicated issues - and I was pregnant - and this silly, but really difficult experience with not being able to sit up well among the pumpkins just leveled me.  (Gavin was a little over a year old)  
Ed didn't know what to do or say as I sobbed the entire car ride home.  

(**Read more about my final thoughts about this photo and that experience at the very bottom of this post!**)

I remember sitting with Gavin that night and rocking him in my arms.  "I'm so sorry," I said.  "Please don't ever think I'm not proud of you.  Please don't ever feel that I'm disappointed in you.  Nothing could be further from the truth."  That silly "first time" in the pumpkins was a game changer for me.  I snapped out of my funk real quick.

Brian's first pumpkin patch experience was so much fun.  He was 9 1/2 months old.
Gavin was a little stronger a year later and it was emotional, once again, to see him sitting in the pumpkins.  He was actually acting protective of his little brother - putting out his hand as if to say "I got ya, Brian - don't be scared!"
So these little pumpkin patch trips are special to me.  They remind me of how far I've come as a Mom because I always revisit that first trip with Gavin in my mind.

We meant to get to the farm earlier this year for Hope's first pumpkin!  But each weekend there was something - other plans, rain, more rain or someone was sick.  Yesterday was the first "perfect" day so we hopped in the car and took off for Milky Way Farms.  Just a word of advice - if you're looking for the whole "pumpkin patch" experience with hay rides and people and, well, pumpkins - November 8th is probably not the best day to go.  We were the only ones there and there was no activities.  There is a benefit to being the only ones there, for sure!  There was one big pumpkin that we found to use for our photo and we didn't have to contend with crowds walking in front of our camera.  The kids got to visit the ducks in the pond, too.  

I wrote about our last trip to the farm with Gavin in THIS post.  It was a great day.  I loved our family photo (taken with a tripod!)...
...and have always adored this photo of the boys.
I wrote about our trip last year with Brian (and Hope in my belly) in THIS post.  It was a very emotional day for me without Gavin.  I remember wanting to take a photo of Brian in the same spot as last year's photo with his brother.  He stood in front of the red door - I looked through my lens and made sure there wasn't any sun glare or other obstacles - and I took the photo.  It turned out like this...
You can read what you want into the photo.  I'm very aware that sun spots show up in photos, but typically I can see them through my lens and I move to avoid them.  I saw nothing that day until I looked at the picture.

In the car on the way to Milky Way Farm yesterday I thought about that photo.  What were the chances that it could happen again, I thought to myself.  That was probably a one time thing - maybe it was a fluke.

So, once again, I asked Brian to stand in front of that door.  And, once again, I checked for any glare or other obstacles to getting a clear shot.  And, once again...
You can't make this stuff up.
After a few minutes of visiting the ducks, we came back for a photo with Brian and Hope.
Are you kidding me?  I even moved around as I took these photos - never seeing anything in my lens. 
This is one of those moments where I decide to believe whatever I want to believe.  So I will tell you that, without a doubt, we believe that Gavin was there.  I mean, he's always here - but it's not always this obvious.  As I showed the photos to Ed, both of us nearly cried.  Happy tears.  Bittersweet tears.
Gavin didn't miss Hope's "first trip to the Pumpkin Patch!"
This was also Hope's "Saturday" shot - her 49th week as our little pumpkin!  This week she's working on her top two teeth coming in.  I swear by her Baltic Amber teething necklace that she wears all the time.  She never drools or seems bothered by her teeth at all.  She's also been doing a lot of independent standing!  It won't be long until she's taking her first steps, I'm sure.
We had fun snapping some other pictures while we were there.  It was FREEZING yesterday and the kids were so cooperative!  
We ended up finding a pile of mini pumpkins and I tried to get a traditional photo of Hope sitting among them.  Didn't quite work out as she was looking at everything but me... and Ed and Brian jumping around behind me trying to get her attention.  Hey, win some - lose some.
I'm pretty sure - despite her not looking as she sat in the pumpkins - that Hope's "first pumpkin patch experience" was pretty darn special.  It's definitely something that Ed and I will never forget.
The last thing we did before we headed inside the creamery to warm up with some homemade ice cream (and Brian's very first hot fudge sundae!) was to set up our tripod - another tradition - and attempt a family shot.  I love this photo of the four of us...
...but we will always be a family of six in our hearts.

**The best lessons come from experience and time.  Now that I've been to the pumpkin patch with three children I know the real truth:  sitting in a pile of pumpkins is hard for ANYONE!!!  And, as sad as I was (probably about things other than pictures in pumpkins) after that first trip to the pumpkin patch with Gavin... looking back, he gave us the BEST picture!!  Ironic, isn't it?  He's looking right at the camera, giving a sweet little smile and rocking it.**


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