Gavin's 6th Birthday...

Dear Gavin,

Today, you would have been six years old.  It was not an easy day for your Daddy and me.  Actually, the whole weekend was quite challenging, emotionally.  But we had a goal to not wallow in our sorrow - for Brian and, really for you.  We are so sure that you're with us - watching us - listening to us.  We know in our heart that you wouldn't have wanted us to be sad on the day that we should be celebrating the very day you were born!!  And trust me, at 8:43 on September 29th when you made your sudden and surprise entrance into this world - it was one of the happiest days of our lives.

Daddy and I decided, since you LOVED rides so much, that we'd try to go to an amusement park - or somewhere fun with rides - every year to celebrate your birthday.  And each year, we will hold up the number of the age you would have (should have) been as a family.

This year?  It was Hershey Park.

It was a gorgeous day - not too hot and not too cold.  Daddy and Brian wore their Super G shirts!  I didn't have a super stretchy Super G shirt that would fit over the HUGE belly your sister is giving me, so I wore my Super G pin.  And we all wore blue... your best color.

Just like Disney, Brian immediately found every penny press in the park!  We even bought a book for him to store them in.  And, because he's always thinking of you, he picked one penny out telling me, "Gavin would love this one."

You would have LOVED this crazy ladybug rollercoaster.  Brian and I went on this TWICE!  I wished that you were on the other side of me sitting on your rug gripper.  And you know what?  I might have shared it with you - I was sliding all over the place on this crazy ride!!  Brian and I just laughed and laughed and laughed...

And guess what?  He even convinced Daddy to go on with him, too!  I could hear them laughing from far away, the two of them!  I bet you could hear them, too!

You know Daddy and Brian - they LOVE those carnival games.  I think we stopped and tried every single one - at least it felt like it!  That would be the time that you and I would walk around or go on another ride, so I was really missing you then.  But it was fun watching Brian and Daddy giggle as they competed for those awful stuffed prizes.  And you KNOW how much I LOVE (not!!!!) those cheap stuffed prizes.  But Daddy and I came from a place of YES all weekend...

...and it was worth it.  I posed Brian with all of his prizes and he couldn't stop belly laughing.  And the more he laughed - the more people walking by looking at him surrounded by stuffed toys were laughing.  I bet you were laughing, too!

I know you would have really loved the Ferris Wheel.  As Brian said, we could see the whole world from the top!

While we were at the highest point, I was so happy that Brian never said anything about being closer to Heaven.  I just really don't want him to think you're in some random cloud in the sky.  Actually, he said the most beautiful thing on our way into the park.  I said to him that I thought you'd be really happy to see us having fun this weekend for his birthday... that he wouldn't want us to be sad.  But how it would be so nice if he were here with us.  Brian's response?

"Gavin's not here.  But that's okay... because if we think about him, he will come." 

And I know you did, Gavin.  Your joy was our joy today.  And you were there.  In every smile... in every breeze... in every giggle.  You were there.  And we felt it.

Happy Birthday, Bugaboo.  We love you - we miss you - and we will always and forever honor your memory.

Love, Mommy.

On the Night You Were Born

Nancy Tillman

On the night you were born,

the moon smiled with such wonder

that the stars peeked in to see you

and the night wind whispered,

"Life will never be the same."

Because there had never been anyone like you...

ever in the world.

So enchanted with you were the wind and the rain

that they whispered the sound of your wonderful name.

The sound of your name is a magical one.

Let's say it out loud before we go on.

It sailed through the farmland

high on the breeze...

Over the ocean...

And through the trees...

Until everyone heard it

and everyone knew

of the one and only ever you.

Not once had there been such eyes,

such a nose,

such silly, wiggly, wonderful toes.

In fact, I think I'll count to three

so you can wiggle your toes for me.

When the polar bears heard,

they danced until dawn.

From faraway places,

the geese flew home.

The moon stayed up until

morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you are

and you wonder who loves you, how much and how far,

listen for geese honking high in the sky.

(They're singing a song to remember you by.)

Or notice the bears asleep at the zoo.

(It's because they've been dancing all night for you!)

Or drift off to sleep to the sound of the wind.

(Listen closely...it's whispering your name again!)

If the moon stays up until morning one day,

or a ladybug lands and decides to stay,

or a little bird sits at your window awhile,

it's because they're all hoping to see you smile...

For never before in story or rhyme

(not even once upon a time)

has the world ever known a you, my friend,

and it never will, not ever again...

Heaven blew every trumpet

and played every horn

on the wonderful, marvelous

night you were born.

Gavin's 6th Birthday Weekend

Today has been a busy, busy day.  Our goal was to make sure that Brian was smiling from sun-up to sun-down.  If Brian is smiling and laughing - that pretty much guarantees that we are smiling, too. Lucky for us - Brian naturally smiles and laughs a lot.  Something that has made our day to day grieving a little easier.

We started off this morning at the Tee Ball field!  Today was picture day followed by a game. Hopefully his overpriced photo turns out okay!  

If not, I kind of like mine.

Brian blew us away today on the field.  He told us that his "Pop" (my Dad who died almost two years ago) has been teaching him.  I don't doubt this!  Suddenly he's moving his body around to catch balls - and paying attention during the game - and just really into the whole experience!  Seriously - this came out of nowhere.  The poor kid has missed the last two practices for one reason or another!!  I'll let some of these adorable action shots tell the story...

Look at him!  This is OUR kid!!!

One of the best moments of the game was seeing this...

Did you catch the stick coming out of Coach Michelle's shorts?  That's Brian's stick.  He found it and didn't want to let it go.  But when he came up to bat with it in his hand, Coach Michelle promised she'd hold onto it.  And she did.  She tucked it there for the rest of the game and, as promised, returned it intact when the game was over.  Coach of the year.  Is that adorable or what??

After the game, we went out to lunch and then got on the road to Hershey, PA!  Brian LOVED the drive.  He got a kick out being in the "country" and oohed and ahhed as we passed cow farms and cornfields and sheep and lots and lots of open land.  But he got REALLY excited when we arrived at the hotel and it was time to hit the POOL!  This was something Gavin would have loved - which is why we chose a hotel with an indoor pool.  I'm still feeling pretty rotten so I sat poolside with my camera while Daddy and Brian splashed around.

They had such a great time.  Brian loved how the entire room "echoed" and decided to sing a little song.  I think you'll like it...

After swimming we went out for dinner and stayed up past Brian's 7pm bedtime, which he got such a kick out of.  Ed and I are coming from a place of YES this weekend, so of course we said "Sure you can have pancakes with whip cream and sprinkles for dinner followed by dessert!"  Why not... right?  And we all smiled when Brian led a "cheers toast" to Gavin for his birthday.

Bedtime was another exciting experience.  Gavin and Brian stayed in a hotel together twice - and we took Gavin on an overnight in a hotel just last year - he loved being in hotels.  And he LOVED his travel tent bed.  We brought that with us so Brian could sleep in it tonight.  But first... Mommy said YES, OF COURSE YOU CAN JUMP ON THE BED!!  Why not... right?

Then, at Brian's request, we told stories about Gavin before he zipped himself into his brother's tent bed to go to sleep.

Tomorrow morning, we will wake up and spend the day celebrating Gavin at Hershey Park.  He would have been six.  

He should have been six.

And we know in our hearts that six would have been a year filled with incredible moments.  

Good night, Gavin.

We will love you forever.

They Already Have Balloons in Heaven...

For the last three years, on a beautiful May day, we have released four pink balloons into the sky on the day Darcy was born.

I called them our "Love letters to Heaven."

But then... Gavin died this past April.  May came - and the day was as beautiful as ever.  We celebrated our sweet daughter, but there were no more balloons to Heaven.  

Everything changed.

It's so important to me to teach Brian that Heaven isn't this place in the sky.  I want him to feel Heaven all around him.  I want him to know that Gavin is accessible to him any time - and he doesn't need to be in an airplane to be the closest to him... or climb the highest tree... or send a love letter tied to a balloon string.  I feel like we'd be sending him a confusing message if we sent balloons to Gavin into the sky.

As I thought about it more, I also thought... well, duh, Kate... what goes up, must come down.  I wouldn't toss a deflated balloon onto the street or down on the ground in a park in front of Brian (or alone, for that matter.)  What are we teaching him if we send up balloons?  We're either lying to him by letting him think they will continue to climb and climb until they reach Heaven... or we're showing him that it's okay wherever they come down because, well, we can't see them anymore so it doesn't count.

I used to love the balloon idea.  And I am absolutely not judging those who still do.  At all.  One bit. But because of how we're handling Gavin's death around Brian - and because of how we explain Heaven to him - it just doesn't make sense to us anymore.

I don't think Brian will even miss the balloon release - it hasn't even occurred to him.  But... almost as if he could read our mind... he came out with this gem tonight at bedtime...

"Mama?  I'm so excited for Gavin's birthday weekend."

"Me too, buddy.  We're going to do lots of things that Gavin would have loved.  Swimming, sleeping in a hotel, rides at the amusement park..."

"And don't worry, Mama.  Pop and Mom-Mom and Pop-Pop and Daddy's Mommy and Daddy - they will all give Gavin a party in Heaven.  They have everything there - toys and cake and balloons and lots of other stuff.  But Gavin doesn't really eat cake, so Pop can have his cake."

"Pop would love his cake, Brian."

"And we can think about them here because we love them."

"Yes, we do.  And they are all around us taking care of us and each other."

"Mama?"

"Yes?"

"I miss Gavin."

"Me too, buddy.  Every day."

Wishing Things Were Different...

In three days, it will be Gavin's birthday.  Our first birthday without him.  It is definitely hitting me hard.  I've dreaded this weekend - but also looked forward to our special plans.  We decided to use tickets to Hershey Park that were gifted to the three of us after Gavin died by my childhood friend, Lizanne.  Gavin LOVED rides.  Last year for his birthday, we took him to Dutch Wonderland... something Brian still talks about.  We thought we would combine three of Gavin's greatest loves this weekend - an overnight stay in a hotel with his cool travel tent bed (which Brian will sleep in)... an indoor pool at the hotel which Gavin would have loved (and Brian will flip over!)... and the amusement park.  

There's only one little issue.  Right now, I'm sick as a dog.  I have a dreadful cold and a building cough.  We can't postpone the trip because this is the last weekend they are open for the Fall.  Hopefully I will rally by Saturday - and feel a LOT better by Sunday.  This illness couldn't have come at a worse time.  And Gavin's death - that couldn't have come at a worse time, either.  I would have much preferred that it would have come.... NEVER.  As it turns out, his dying is very inconsiderate to our living.  

This morning while Brian was at school, I had a pity party.  I started talking to Gavin and telling him how I should be wondering what he and Miss Sara were doing in school at that moment - not wondering how I was going to go on without him at that moment.  How I should be stressing about his birthday party - and how to decorate his cake - and what big, huge present we should get him - not wondering if we'll make it through this birthday without him.  I just wish that things were different.

Today, our beloved Miss Sara gave me the unbelievable gift of time.  She has been downstairs playing with Brian so I can rest upstairs in bed this afternoon.  She arrived with a card and a HUGE gift bag filled with adorable outfits for Hope, her Goddaughter.  In the card she wrote that buying these little gifts for Hope filled the place in her heart that was missing buying birthday presents for Gavin.  I completely understand what she means.

Sara was with us through the worst days of our life.  She was with me and the boys as we drove to the emergency room.  She kept her composure as she drove Brian home from the ER in our minivan (which she had only driven once before) while we chased a helicopter that held our dying son.  She moved into our home and became Brian's surrogate Mom as we kept vigil at Gavin's bedside for the next three days.  And she bravely gave a eulogy at the funeral for this little boy that she had become so, very close to.  She will be part of our family forever - as it should be.

Brian was thrilled to see her today.

She even brought a gift for him - "Chutes and Ladders" - and he promptly made up his own set of directions on how to play.  

I could hear them laughing and making up games and doing puppet shows and dancing around.  It made me so happy.  But there was one giggle that was missing from the equation... and one set of arms that should have been wrapped around her neck.

Gavin

Something tells me this is going to be a long and difficult weekend.  But it is important to us to honor Gavin - to let him see us having fun on what should be a happy occasion, the day we celebrate his birth.  It's important to us to model for Brian that it's okay to laugh and have fun and still express your sadness and talk about how much we miss Gavin.  This weekend is important in so many ways.

But boy - I think we're all wishing that things were different.

The Myth of My Amazingness...

There's something that I have been wanting to talk about.  Needing to talk about.  And I decided that today - with my head foggy from a cold that Brian and I have been sharing - is the best day.  Okay, maybe it's not the BEST day - this may come off as incoherent and nonsensical.  Work with me, okay?

I am just a Mom.

Special needs Moms (and Dads!) are often put up on a pedestal.  We get "God only gives special kids to special people" and "You're a saint" and many more very sweet platitudes that, frankly, just aren't true a lot of the time.  I've read horrible stories about special kids who were given to simply horrible people that abuse and neglect them.  And I've seen news stories about special needs kids whose parents are, shall we say, less than "saintly."  So I always took those compliments with a grain of salt and told people, "If this was your child, you'd treat him just as you treat your other children.  It's just something that becomes normal in your family!  You do what you have to do to help your child."

But lately - since Gavin died and while my readership has grown - it's gone into overdrive.  Everything I post... every photo I share... brings out the excessive compliments.  I'm amazing.  I'm so wonderful. I'm so fashionable and have movie star looks.  Okay, no one said that.

It's making me uncomfortable.

I really, really don't want you to put me on any kind of pedestal or feel like I am any different than you. Because truly, I'm not.

On my Chasing Rainbows Facebook page, I've been sharing photos of Gavin from the last five and a half years.  It's a slow process - I'm only on year two!!   I've also been sharing things that we've used to help him... that we created to help him... that he used in therapy, etc.  If I let it, the comments could easily explode my ego.  But I know something that many of you don't.

From the day we brought Brian home from the hospital - when Gavin was 15 months old - we have had help at the house.  We had an aide for Gavin Monday through Friday for the whole day.  This allowed both boys to get attention... allowed me to feed a baby and know that Gavin was getting fed at the same time.  It made it easier to take lots of photos and capture every moment.  Most Moms don't have that and I know that we were very, very fortunate.  There were times that I felt sad - even ashamed - that we had helpers.  When I would wake up with severe stiffness from my Rheumatoid Arthritis and had to rely on these wonderful women to help me with the boys - it sucked.  But having someone here all the time also meant that they really got to know the intricacies of Gavin's care and feeding and therapy schedule. You can't just hire any babysitter when you have a special needs child.  They would need a couple weeks just for "Gavin orientation."  We were so, so lucky - and we know it.

From the day we brought Gavin home from the hospital - the second time, when he was about five months - I've had a therapist in the house nearly every single day.  Know what that means?  I learned a lot.  I got a lot of great ideas.  They showed me ways to help Gavin... and showed our helper how to help him.  Many Moms don't have that and I know that we were very, very fortunate.  I've had a few original ideas over the years - clever way to help Gavin.  But really, many of the things we did were ideas from a therapist, a teacher, another special needs parent.

Gavin's entire life was a team effort.  It wasn't just me.  This blog is mine - and I write from my perspective - and it seems very I, I, I.  But there is also Ed.  I try to maintain his privacy as much as I can and I wouldn't presume to speak for him which is why I don't write "we" as much.  You should know that he became a Dad the second Gavin was born.  He had barely held any babies in his life before Gavin - and there he was in a NICU with a baby who was tiny and had tons of tubes and needed a lot of help.  Nothing seemed to phase him.  He is a total hands on Dad to both boys.  He even changed jobs after nineteen years (NINETEEN YEARS!) because he wanted to be home more to see the boys at dinner and be able to put them to bed.  Many Moms don't have that and I know how very fortunate I am.  How fortunate the boys are.

And Gavin always had an army of doctors and other practitioners that were there to support US as much as they were there to support him.  Doctors that gave me their emails.  Doctors that I cried to.  Doctors that could see the bigger picture and helped me to see it, too.  Many Moms don't have that kind of support... I was fortunate.

My point?

I am just a Mom.  Just like you.  I am thrilled beyond words that my blog has so many eyes on it now - but not because I want or need your praise.  I feel like more eyes mean more people that have the chance to be affected by Gavin's journey... to be changed, even.  I feel like more eyes mean more people that can learn all the things we learned.  Gavin wasn't supposed to go out like this - he was making so much progress and we worked so hard to get him there.  Ed and I could tell that he was on the brink of something big before he died.  He had just started walking a few months before - something many never thought they'd see.  We really believed he would have been communicating this year.  For sure.  It is bringing me comfort to share everything I can in the hopes that other parents out there - especially if they don't have the support that we had - will find new ways to help their own superhero.

I am not the superhero.  I'm just the messenger.  

So... the take home message tonight is this.  Don't spend your time thinking that I am better than you in any way shape or form.  Remember - I didn't do any of this alone.

(But p.s. - if anyone wants to tell me that they envy my fashion sense or that I have movie star looks, that would be cool.  I would know you were lying - but we can keep that between us.)

Big Brother Class...

When Gavin was preparing to be a big brother, he dove into research right away.

Actually, I constantly talked to Gavin and tried to prepare him for the big changes that were about to come.  I hoped and hoped that something was sinking in.  Ed and I really only had one major fear - that Gavin would be in constant sensory overload.  He was a little sensitive around loud noises and... babies are loud.  We were both amazed once Brian came home.  Gavin was instantly in love... and it just grew and grew.  He was such a great big brother - and still is.

I never took Gavin to a "Sibling Preparation Class" because I knew he wouldn't really "get it," developmentally because of his young age.  But Brian - he is the perfect age to "get it" and today, that is just what we did.  Ed and I took him to Paoli Hospital - where Gavin and Brian were born and where we will deliver Hope.

The instructor was wonderful and so great with the group of kids in the class.  Brian was very, very quiet... taking it all in.  The instructor brought a photo book in of her own children - explaining everything... what newborns look like when they're born, the umbilical cord, what babies will eat, how Mommy will spend a few days in the hospital and what kinds of things big brothers and sisters can do to be helpful once the baby comes home.

After the class, we all took a tour of the maternity unit (which was recently renovated and is beautiful!!).  Brian got to see the kind of room I'll be in... and where he'll be coming to visit me and meet his sister for the first time!!

Then... in a hilarious moment... a nurse wheeled a brand new baby into the hallway for all the kids to see.  As it wheeled closer, Brian backed up into us more and more - like an alien was coming towards him.  He was equally mesmerized and terrified.

After a brief movie about Mommy having a baby - which Brian called "the longest movie ever" - he got to practice holding a "baby."  I don't know about you - but he looks like a natural.

Brian is officially certified to be a big brother now!!  As if we had any doubt.  He already had the best teacher in Gavin.

As we left the hospital, Brian said...

"Mama, I'm so excited that Gavin and I are going to be big brothers!"

Me too, buddy.

Me too.

She Would Have Been Three...

September 21st.  The day that my due date was calculated when I was pregnant with Darcy.  We know she probably wouldn't have been born on that date - given my history of early deliveries and scheduling a C-Section.  But still, it's all we have to go on.  So, September 21st is the day we celebrate the age she would have been.  And today... she would have been three.

We named her early, as we do all our babies.  And as soon as we found out she was a girl we announced it to the world.  I wanted to wait to put it in my CaringBridge journal until St. Patrick's Day.  Ed and I met on St. Patrick's Day in 2002!  We let the boys make the big announcement in this little video:

Make a video - it's fun, easy and free!
www.onetruemedia.com

Then, on a May afternoon, I found out that Darcy was gone.  A freak cord accident that couldn't have been prevented.  I was admitted to the hospital and labor was induced... but my body wouldn't dilate.  Not on the first day... or the second... or even the third.  On the fifth day, with Ed sitting bedside the entire time, I finally dilated.  And hours before Mother's day, I delivered and we held our sweet daughter.

I'm not sure which was more true - I didn't want to let her go or she didn't feel ready to leave.  What I do know for sure is that it was one of the absolute hardest days of my life.

I have lost a lot of pregnancies.  And I mourn each and every child that we never met.  But when you are far along enough to have a nursery prepared... clothes in the closet... dreams and plans... it makes it all that more painful.  Celebrating Darcy on what might have been her birthday... and on May 10th, the day we met her... is also our way of celebrating all of our children.  We love each and every soul that we've been blessed to carry... or raise... fiercely.  

Today we had plans to do some fun things to celebrate, but Brian woke up sick and telling us his ear hurt.  Our wonderful pediatrician, Dr. Kienzle, met us at his office to take a look.  I was sure he had an ear infection - but I was wrong.  Just a cold.  We stopped on the way home and bought a little cake - vanilla with vanilla icing at Brian's request - and balloons - and spent the rest of the day at home.

Brian sang Happy Birthday to his sister and blew out the candle...

And we talked about what she might be doing with Gavin on this special day in Heaven.

I will always include Darcy in our family story.  I often wonder what she would have been like.  Would she be as mild mannered and sweet as her brothers?  Or would she have a completely different personality.  And now I wonder if Hope will be gifted with part of Darcy's spirit somehow.  Perhaps in getting to know Hope, I will unknowingly see glimpses of her sister.  I catch myself calling Hope "Darcy" at least once a day... and it makes me smile.  She is, and always will be, ingrained in my heart.  And, lucky for Hope, I saved a few things that were meant for her sister - like this doll.

It is sitting in Hope's nursery just waiting for her.

I love you, sweet Darcy Claire.  Happy third birthday.