Monday, June 30, 2014

Seven Months!...

This mystery "baby in red" turned seven months today!
And now it's time for the big reveal.
  Here is...
...wait for it...
Hope Margaret Leong!
(It's a slow news day - let me have my fun.  ha ha!)
Seven months seems like such a long time - but not if you're Hope's Mommy.  I feel like she just got here - the days and weeks and months are just flying.  Yet the other day I found myself buying one of her first birthday presents!  (I couldn't resist)
We've seen the biggest changes by far this month.  As you know, Hope started eating solids!  She's still only eating one little bowl a day.  The first week was Yams. (loved)  The second week was bananas.  (loved)  And today I served a major favorite of Gavin's - yams and banana mixed together.  (hated)  Can't win them all.  I think the next food will be avocado.  I'll keep you posted on her review.
Hope is also scooting around much more.  Still not "traditionally" crawling on all fours - but she gets around!!  Brian and I picked out a couple new toys for her to encourage her to crawl after them.  We got "Follow Me Fred" and "Baby Einstein Activity Balls".  So far both toys get thumbs up from all of us!
She's doing a great job sitting up on her own!  Not 100% steady, but she gets better and better every day.  And her dark hair is growing more and more every day, too!
Her sleep schedule hasn't changed too much.  She goes to bed at the same time as Brian - 7pm.  I typically have to feed her one time in the middle of the night.  Most of the time she'll wake up between 6-7am, eat, and go back to sleep for a little nap.  Last night was an exception (unless it's the new norm - I'll let you know!).  I woke up this morning at 7:10am and realized that I never woke up in the middle of the night!  I jumped out of bed and asked Ed if he heard her through the night and he said no.  Of course I ran to her room to make sure she was breathing.  I don't think I breathed until I was standing over her crib and watching her chest rise and fall.
I always hear the kids.  Ed used to joke that I would jump up because I heard Gavin BEFORE he cried.  (He was right - and I was right, too!  I had a strong intuition with Gavin)  Anyway... I have to believe that I would have heard Hope last night if she woke up.  She was all smiles when she woke up on her own at 8am!!  That's 13 hours straight!
The love affair between Brian and Hope continues.  He simply adores his little sister and loves to include her in anything he does, which is just so sweet.  The love affair between Hope and her Daddy has gotten even stronger.  She just beams when he's around.  And me?  I still can't believe she's here.  
I love this little girl and feel such a special bond with her.  
We are grateful for Hope.

Sunday, June 29, 2014

In The Daylight...

I feel his presence most in the sunlight.  As I watch his brother and his sister getting to know each other... learning to trust each other... it's as if I'm looking at him once again.
The protection and care that was once offered to him in that rough backyard terrain... now offered to Hope.
In those moments on the swings... on the deck... in the driveway... I know he is with us.  In every giggle.  
In every squint of our eyes as we look past the sun for him.  
In every chase of a butterfly.

I spend these moments determined to smile.  Refusing to let what can't be steal what is.  I want the butterfly chaser to turn and see my bright eyes.  I want my little giggler to dare me not to join her.  I know that this pleases him... these moments. 
As the hours tick by and the sun begins to dim, I beg the moon to delay rising.  Because now it is in the sunlight that I feel him the most.  And I know when the moon rises... and the night falls... I won't be able to find him in the dark.  Not because he is not there.  

Not because he is not there.

So I sit in the sunlight and and watch them.  These two souls that were destined to be together.  I watch them learn... and grow... and laugh... and love.  As the sun bounces off of their beautiful eyes, I see him.  And each time I whisper... 

"They will always have your light in their eyes.  I promise you.  They will always know you."

And then I beg the moon to delay rising once more.  Because now it is in the sunlight that I feel him the most.  I can't find him in the dark.

Not because he is not there...

But because the darkness simply cannot contain his light.

Friday, June 27, 2014


This week's events - if I haven't mentioned it before - have just leveled me.  The irony of the woman who performed the ultimate random act of kindness for me after Gavin died... then lost her own little boy a little over a year later.  And the fact that he died in a pool the week I've been writing about Brian's swim lessons at the local YMCA.

But there's something else.  As you know, Gavin LOVED the water.  Any kind of water.  He also had no concept of danger.  If someone had predicted that Gavin was going to die in a random and unexpected way - I would have assumed it would have been in water -  not a random febrile seizure that would stop his heart on a sunny, Wednesday afternoon in April.  Gavin, like Bode, was not 100% like his peers, cognitively and developmentally.  This tragic accident could easily have happened to Gavin.  It just would have taken five seconds of not looking.  Honestly - Gavin was that quick and it is just that easy to get yourself into trouble that you can't get out of.
So for the last few days - as I watched Brian in his swim lesson - I thought of Bode.  And Gavin.  And how Brian was fearful of the water for a long time... until Gavin died.  After Gavin died, it was like he passed on his love affair with water to Brian.  It's a beautiful thing to watch him play and splash and jump in the pool into his Daddy's arms or mine.

Brian was brave over these last two weeks and tried new things!
He was able to float on his back unassisted for ten seconds!
He practiced putting his face in the water and swimming using his arms and kicking his legs.
He enjoyed laughing with his fun swim instructor, Miss Stephanie.

"She's hilarious, Mom." he told me
The other kids in his class seemed way more advanced - they were jumping in without anyone catching them... swimming doggie paddle or actually swimming back to the wall... swimming using the noodle, etc.  I was proud of Brian for knowing what he could and couldn't do, though.  He didn't try anything that he knew he couldn't do without the teacher's help.

The last day was yesterday and it was all about safety.  She taught them how to use a pool noodle (or anything they can find) to pull a friend out of the water.  They learned about calling a lifeguard for help.  They practiced with life vests and getting in and out of an emergency raft (definitely the highlight of Brian's experience!)
Brian definitely seems to have a healthy fear of water.  But here's the thing... I'm still not comfortable.  After this experience with Bode this week - I feel like Brian (and maybe even Hope!) need serious swim training.  We don't have a pool at our home (and never will, thank you!) - and we're happy to catch Brian as long as he wants and hold him in the water to play.  But I want him to be able to save himself if he falls into a pool.  I'm considering private swim lessons throughout the rest of the summer.
Thank you to (the hilarious!) Miss Stephanie from our YMCA for a great two week swim lesson!
The last two weeks has also been "stroller boot camp" for little Miss Hope.  Brian and I decided that she needed to love sitting in her stroller and learn to entertain herself before we go on vacations this summer to the beach or to amusement parks - or for things like his swim lessons or Tee Ball in the Fall.  We are happy to report that she passed "boot camp" with flying colors.  She sat in her stroller happily 80% of the time during Brian's swim lessons entertaining herself...
...10% of the time engrossed in watching her brother in the pool...
...and the rest of the time in my lap cheering Brian on!  The love affair continues.

Wednesday, June 25, 2014

A Tragic Turn of Events...

After Gavin died, I was contacted by a blog reader named Christine.  She had written a letter to the owner of Gillian's Wonderland Pier in Ocean City, New Jersey, after seeing a photo of Gavin riding one of their fire trucks on my blog.  SHE is the woman behind Gavin's fire truck on the boardwalk!  I wrote about the day we met her - and saw the fire truck for the first time - in THIS post.  It was a very emotional weekend.  We were in Ocean City to scatter some of Gavin's ashes into the Ocean off of a pier where we vacation every year... and then we were going to meet Christine (and her adorable daughter, Skylar) by the fire truck.  Meeting Christine was wonderful.  How do you thank someone, really, for doing something so incredibly selfless?  It seemed impossible.  We continue to be so grateful to Christine and Gillian's.  Every single time someone sends me a photo of their child on that truck... or every single time I see the photo of Gavin on that truck... or every single time we are there watching Brian on his brother's truck... I think of her and her lovely family.
This morning I woke up to an email from Christine that has rocked my world.  She wrote to tell me that, in a tragic turn of events, she found herself laying in a hospital bed next to her own son, Bode, who had died.  This all happened just last night.  Christine is in the Army and, unfortunately, was working three hours from her home in New Jersey when she got the call.  Bode had fallen into the family pool and drowned.  Imagine having to drive three hours to the hospital to find your child already gone.  Bode was four years old and leaves behind two sisters and a brother.
Since this morning, I have felt crippled with anxiety.  All through Brian's swim lesson... and all afternoon.  I am feeling so helpless.  I have been through this before myself so I can relate to what she's going through right now.  And I have only met Christine one time - on the boardwalk - to thank her. Yet I feel compelled to do something - anything - to help make this easier for her.  Yet I am frozen.  I suppose this is because I know all too well that there is no "magic thing" that anyone can do to make it better... or easier... or right.

* Update:  I decided to set up a fundraising page through "You Caring" - and to put the word out to anyone in Ocean City who would be willing to cater a luncheon.  In less than 12 hours, I had over $12,000 raised for Bode's family - and what seemed like every restaurant and caterer in Ocean City willing to provide food.  Once again, my Chasing Rainbows community came through - big time. *

 I want this woman.. this soldier who defends our country... this fellow mother who gave us a lasting legacy for our own son... to feel a hundred thousand arms wrapped around her right now.    

Losing a child is something that no parent should ever have to experience.  Imagine the worst possible pain - the worst thing that could happen to you - and then times it by a thousand.  My heart is broken for this family.  As we stood on the boardwalk laughing and smiling - our eyes filling up with tears thinking of Gavin on one of his many happy days in Ocean City... we could never have predicted that Christine would be walking in our footsteps only a year later.  Such a tragic turn of events.

God Bless you, Bode.  And God comfort your family who will miss you so much.  I hope they see your spirit in the ocean waves... feel your spirit in the ocean breeze... and find peace in the sand where your toes once danced.

(Bode's story posted with Christine's permission)

Sunday, June 22, 2014

I Suppose He Knew...

A lot has happened over the weekend!  Let me catch you up....

Much to my shock, we surpassed one hundred thousand facebook followers on the Chasing Rainbows Facebook page.

Even Hope can't believe it.
To "celebrate" - I'm going to post one hundred thousand photos of my children in this post.  Just kidding - there are only thirty three.  And three videos.

But more on that Facebook page thing later.  Here's what went down in the Leong house this weekend.

A (pretend) fire broke out and Brian came to the rescue.
He was the fire chief and I was his "assistant fire person."  This was serious business so please stop laughing over there.  Yes, you.  I can hear you from here.
Even Hope got in on the action...
Big news:  Hope had her first swing ride in her big brother, Gavin's, swing!  
If you remember, this is the swing that Brian would ask me to push while we were out there on the two other swings.  He thought "angel Gavin" might want to swing with us.  I'm sure he was right.  And now our little angel, Hope, can enjoy it, too!
Here she is before dinner swinging again.  But this time she lost her hat... and her pants.  Hey - that's sometimes how it goes.
It was a gorgeous weekend for playing outside - and Brian did just that!  He had SO much fun on his new Radio Flyer Ziggle that he got for his "half birthday!"

Hope continued to practice her crawling (she's getting there!).  I decided to lay down this gorgeous blanket as motivation - and was so moved by her response.  This blanket was made for me by a total stranger who reads this journal.   She gave it to me on my first Mother's Day without him, just one month after he died. Brian has LOVED this blanket so much - and he had so much fun giving Hope her first tour of all the photos.  "This was me and Gavin in matching pajamas.  And this is me and Gavin in our fire hats.  I put that on his head just like I put the hat on your head, Hopi!  Oh and this is me kissing Gavin.  And this is me as a baby with Gavin."  Hope has been moving herself around from photo to photo, squealing and "talking" to each one.  It's just... the best.
Last week, we conquered Yams!  Hope got the expected little rash on her bum-bum that goes with the territory when we start solids (at least for us) - but it didn't seem to bother her as much as it bothered me (it's gone already).  This week - BANANAS!  Brian couldn't WAIT to go to the store to buy them.  Then he couldn't wait to see if she liked them.  
Did she?  Take a look...
Then he couldn't wait to feed her.
Hope is really enjoying eating solids!  I'm still breastfeeding 99% of the time.  I am only feeding her once a day - and it's not even a substitute for a breastfeeding session.  We're taking baby steps.  But boy - she loves to eat.  She instinctively opens her mouth wide and looks like a little (ravenous) baby bird - it's so cute.  She also constantly wants to grab the spoon.  This little one may be feeding herself before we know it!
Back to the hundred thousand + Facebook followers.  I really mean it - it blows my mind.  Before you think I'm fishing for compliments (I'm not - so please refrain from any!!), hear me out...

I had no real desire - or even a reason that I could think of - to start a Facebook page.  I have been writing about my family since Gavin was a baby - January 26, 2008 was when it began on CaringBridge.  Gavin was three days shy of being four months old.  Not long after I started writing the CaringBridge posts (mainly to keep my family and friends updated on Gavin), I realized my writing was helping me.  And it was forcing me to keep a journal of all of Gavin's accomplishments, struggles, milestones, illnesses, weights - all of it.  It was also a place where I could post photo after photo after photo - because, let's face it, I'm a little obsessed with taking pictures.  

To this day - I write for the same reasons.  No other.

Along the way I suppose you could have put me in a category of "special needs bloggers" and that would have been fine.  I wrote a lot about the different things we did for Gavin... therapies, alternative treatments, etc... and many people benefitted from learning from us.  (And I benefitted greatly from learning from other people's blogs and experiences!)  I developed what I guess you could call a "following" - I think people were really drawn to Gavin (and then Brian when he came along!) and loved following their progress together.

But then came that fateful day in April.

Suddenly I had reader after reader after reader - it was unbelievable and overwhelming.  I wrote a whole post about how much of it made me uncomfortable called "The Myth of My Amazingness" which you can read HERE.  

I guess you could say that I "used" this blog and the readership to do a lot of good for a lot of people.  With your help, I was able to raise a lot of money (just by putting it out there for anyone who wanted to contribute!) the first year after Gavin died.  But now, for the most part, I'm done... and back to posting about our little life.  Little things might crop up here and there - but it won't be anything that I take on personally.  A lot of people have asked if I'll set up a foundation to continue raising money in Gavin's memory.  To that I say... no.  For me - my "foundation" is my family and I want them to have all of my time.  I think the best thing I can do in Gavin's memory is to do a good job parenting his siblings.  That is enough for me to focus on.

Anyway - I'm rambling.  What I'm trying to say (I think) is this.  I randomly decided to create the Chasing Rainbows Facebook page on March 10th, 2013.  That turned out to be exactly - to the day - one month before Gavin's emergency room incident which led to his death.

There are no coincidences.  If I've learned anything in 44 years, it's that.

I am still the same Mom who writes about her children and first swing rides and birthday celebrations and school.  I still write about heart crushing sadness when we all miss Gavin... or bad days with my arthritis... or when I throw boxes in the garage and curse the Heavens.  I'm still the Mom who writes about alternative therapies and treatments in the hopes of helping someone else who likes to try new things with their child.  I continue to post excessive amounts of photos (can you blame me?  LOL!)  I'm still the same Mom who doesn't have the cleanest house... eats a lot of Chinese food takeout with her husband for dinner... forgets to send birthday cards... writes run on sentences... and overuses exclamation marks.  (Totally!!)  Yet you still continue to come...

One month before he died.

I suppose he knew that we all needed each other.  

So, in honor of all of that - here is an excessive amount of photos of our dear Hope.  She was 29 weeks on Saturday!  If you're wondering why I count weeks - no reason.  It's been my "thing" since Gavin was a baby.  I take pictures and celebrate each week until they are one... and each month until they are two!  Why not!?  It's fun.  And it gives me an excuse to show off some of the pretty clothes hanging in her closet.  Like this gorgeous dress from our friends, Gar Bo and Allison!

Enjoy this glimpse of our blue eyed Hope and her emerging personality...  
Thank you, as always, for caring about our little family.  And thank you for remembering Gavin.

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