Friday, February 28, 2014

Save The Date for Gavin's Playground Project!...

I'm so excited to announce that "Gavin's Playground Project" is set for April 5, 2014!  Save the date!!  Hope and I have been a "two woman show" from the kitchen while Brian is at school - cold calling companies, going on meetings, and basically making magic happen.  I'm telling you - this is going to be an awesome night.

Wondering what "Gavin's Playground Project" is all about?  You can read about my vision in this post.  But basically - here's the scoop:

The entire event is our way of marking the one year anniversary of Gavin's death - our way of honoring his life and his legacy.
Gavin spent a lot of time at Nemours A.I. DuPont Hospital for Children.

They never had a playground that was accessible for kids like Gavin.

I should have advocated for it harder when he was alive.  I did ask (and got) a wheelchair swing on the playground, but never pushed for more.
Gavin died at DuPont.

Now that he's gone, I am determined to advocate for all the children left behind who can only watch while more able bodied children play on the current playground.

That has to change.  And we're going to make it happen.
In an effort to "take back April" - I decided to host a fundraiser called "Gavin's Playground Project."  All the proceeds will go to DuPont for their "Abilities Playground" fund.  It's going to be such a fun night and I hope you can join us!  I know it will be fun for me to see family and friends... and to put faces with the names I see on my pages every day online!

Here are the details so far:

Date - April 5, 2014

Hall E - across from Gavin and Brian's favorite place, Arnold's Family Fun Center!

Price - $25.00 per person for "early bird tickets" and $50.00 per person if you purchase your ticket after March 29th.

There will be a website for ticket purchase and event information.  I am hoping it will be up and running so tickets can go on sale by next week.  I will give a few days notice both here and on my Facebook Page before tickets go on sale.

** Please note that there will be NO tickets sold at the door. Everyone must buy their ticket online when it opens. For those that were hoping to buy tickets to set aside for nurses or teachers or "there in spirit" tickets - please make a donation straight to the hospital instead.  Only those that are going to attend the event should buy a ticket or else it will get very confusing. **

Time - Doors will open at 5:30 for people to come in, register, find your assigned table, look at some of the silent auction and raffle items and get a drink from the cash bar. The silent auction will be going on at this time and through dinner.  The dinner buffet will begin at 6pm.  

Entertainment - The fun really begins at 8pm when Bill McMenamin from "McM Entertainment" begins a super fun and ultra competitive trivia event.  Each table of ten is a team and only one table will be given the collective title of "Smarty Pants."  He will also be playing some great tunes all evening.

Lodging - There are several hotels in the area for those coming from out of town and I am currently working on getting rooms blocked and discounted rates.  One hotel will be a "suite hotel" for those who want to share the cost.  Keep watching my blog for that information.

The theme of the evening is - open your wallets!  There will be plenty of opportunities, big and small, to give to the playground project - and every dollar is gratefully accepted towards our goal. There is a dress code - and it is come as you are!  If you want a night out and feel like getting dressed up - do it!!  If you want to come in jeans because you dress up every day - do it!!  I want everyone to feel happy that night.  I will likely be in one of the two pairs of maternity pants that I wear over and over and over... let's be honest.  
This will be such a unique night.  If you think you've been to a silent auction... you haven't seen anything like we're planning!  It will be a very unique, very fun and extremely interactive experience.  Here are just some of the items that will be available for bidding - and I'm still on the hunt for more:

A "sit in" with a very popular morning radio show in Philadelphia.

An overnight to the "Great Wolf Lodge" in the Poconos.

A Disney World Vacation

A consultation with Gavin's nutritionist, Coralee Thompson

A trip to the 2015 Grammy Awards

A butcher block set of Cutco Knives

A free visit with Dr. Trish, Gavin's incredible energy healer.

And so, so much more - local, national and international gifts, events and experiences to bid on.
Sponsorships of all kinds - personal and corporate - are still available to make this night a huge success.  See THIS post for the details at the bottom.

 If you know you can't make the party and would like to donate directly to the hospital, please click HERE to get to their secure donation page.  Under "donor designation" - select "abilities playground."  You can make a designation note in memory of Gavin if you wish.  The donation page only has options from $25.00 and up.  If you would like to give less (any amount is generous - and every dollar counts!!) - you can click the donate button down the right side of my blog under "Gavin's Trust Project" and mark that it is for the playground.  That money goes to me and I'll be sure to redirect it to the hospital.  As of today, the hospital has received a thousand dollars from my readers for this playground.  That's incredible.

Prefer to mail your donation?  Write "Abilities Playground" in the memo of your check and mail to:
Joy Zernhelt
Development Coordinator
Nemours Fund for Children's Health
Shands House
1600 Rockland Road
Wilmington, DE  19803

Thank you, as always, for helping me make the impossible... possible.


Thursday, February 27, 2014

Frozen...

Our calendars start in June in our house.  Creating them is one of my favorite things to do - I look forward to it every year.  I make them in June for a very silly reason - it makes a great Father's Day gift!  Ed has a special one for work to recap the year in photos - and we have one in the kitchen.  Every calendar - since the first year we were married - has been named.  "Our First Year"  "The Year We Met Gavin"  "Brian's First Year"... you get the idea.  I save them all - they are like mini history books.

This year's calendar was difficult to make.  Gavin had been gone for two months.
I loved going through all the photos for each month - until I got to April.
Once I hit April, there were no more photos of Gavin.  I remember sitting in front of my computer with tears streaming down my face.  I wanted to somehow fit every single photo I had into that month.  I didn't want to face that this was it.

As I flipped the calendar each month since last June, I felt so happy every time I went to the refrigerator.  The pictures recounted memories that were so recent.
The summer photos were my favorite... especially the ones from the beach.  But painful, as well, knowing we will never experience Gavin's joyful face as the waves crash around him.
September is his birthday month.  It is so hard to believe he would have been seven on his next birthday. Yet now here we are - he is frozen.  Forever five.
I know I will get excited about creating calendars again.  I know that I will miss Gavin's big milestones in photos - like taking steps on his own.
His milestones will be replaced with his baby sister's big moments.  And that will be wonderful.
But part of me dreads every time I have to flip that calendar now.  It is a harsh visual reminder that we are moving further and further away from Gavin.  
I will still add him to our calendars each year... but it will never, ever be the same.

He is frozen at five.


Monday, February 24, 2014

Energy Bars...

Hope still hates her car seat.  I think it will soon be time to give in and try a new one.  Maybe she'll hate the new one, too, but we won't know until we try.  It's painful when I'm the only adult in the car and can't climb back to sit next to her - to stroke her cheek or offer a binky or make her smile.  
This morning I thought we had turned a corner.  I put her in her seat to take Brian to school and, what?!?  She smiled!!  Then - silence.  The entire way there.  Brian and I noticed patches of grass peeking through the snow as we drove through the park and I said, "Spring is on the way!" and I felt hopeful.  Maybe she grew out of her utter disdain for this car seat.

Not so much.

On the way home, as I listened to her scream and scream and scream... I thought of Gavin.  

Gavin had such severe and painful reflux.  He also had low tone.  Very low tone.  As an infant, he constantly threw up in the car...which was painful.  But then, probably because of his tone, he would gag and choke.  Each time he did this, I would have to jump out of the car - open his door - pray he wasn't blue (sometimes he was blue) - and suction out his mouth.  I was an expert at ripping him out of his car seat at warp speed - even on the side of the road.  Often on the side of the road.  A 15 minute trip would take me 30 minutes.  If I had to take him for an appointment at the hospital an hour away...I would need to leave two hours ahead.  Sometimes it would happen as I was backing out of the driveway.  It was bad.  Every single time we got in the car it was bad.

But one thing I learned during that time?  That Gavin was very sensitive to my energy.  If I panicked - his stress would escalate.  I remembered this every time he had a painful procedure... every time he was working hard in therapy... every time he was hurt.  If I kept my energy bars even - in the middle - he would feel it.  I would always be in his face so he could look into my eyes and sense that I was calm.  And that it would be okay.

This lesson served me well the day Brian came to say goodbye to Gavin.  I felt strongly in my heart that Brian needed to have his own experience that day - the last day he would ever see his big brother.  I didn't want him to sense our fear - our devastation.  I didn't want us to push our agenda on his goodbye or make him do anything he didn't want to.  And I certainly didn't want to make him feel like he had to care for us or tend to our emotions.  It was not easy.

So I try to remember all of this when she is crying in the car seat?  It hurts my heart... yes.  And sometimes, I feel those energy bars creeping up to high when she screams. But I will myself to keep calm... and keep those energy bars right smack in the middle.

**********

I had a conference with Brian's teacher this afternoon!  She had handwriting and other "scored" papers to show me from the beginning of the year to now - and Brian has made so much progress in every area.  Writing his name, counting to high numbers, recognizing different shapes and listening.  I'm very proud of how he's blossomed socially.  He started the year pretty shy and his teacher remarked that he would get teary when he couldn't express what he was feeling (like frustration that someone was playing with a toy he wanted).  He's come a long way in that area.  I asked her if he ever mentioned Gavin as I was a little nervous that he'd chat about his brother dying and freak some of the other kids out.  She said that he's mentioned Gavin's name, but only that.  Then she told me something so sweet.  She thought it was around Christmas time when they might have been talking about the baby Jesus.  Brian blurted out...

Gavin died and went to Heaven - and then my Mommy got Hope.
Yep.  That is pretty accurate.

******

I got an update from the hospital this morning about the donations they received over the weekend!!  They had 13 donations in Gavin's memory towards the Abilities Playground - totaling $495.00!!  That's a great start and I am so grateful!  

They also were able to fix the page so our international friends can donate!  

I've been working hard (when I can!) on the fundraiser!  I really think it's going to be a GREAT evening.  I can't wait!






Saturday, February 22, 2014

Tales From The Piggy Bank...

Brian has a piggy bank.  A green "Angry Birds" piggy, of course.  Inside he has had a ten dollar bill. A gift from someone for one occasion or another.  He pulled it out today and asked if he could use it for something, so I said yes!  I told him I'd take him to "5 Below" (where everything is literally $5.00 and below) and he could pick out two things... but HE would have to buy them at the register.  He was so excited.

We walked the aisles - over and over and over.  It's hard to be a kid and have so much colorful input coming at you - everything looked perfect and he had such a hard time choosing.
After much thought, he settled on the "Gyro Bowl" - a cool "As Seen on TV" item... and "fake legos."

We walked up to the register to stand in line and the nerves set in a little bit, but he pulled it together and walked right up to the counter and plopped both items and the ten dollar bill in front of the clerk. Note to self: teach him purchasing etiquette.  
When she handed him his bag he said thank you, unprompted!  (Proud Mommy moment)  It seemed silly, but I got a little choked up as I watched him walk in front of me holding his bag so proudly.  My little boy is getting so grown up.
We stopped in to Miss Silvia's new salon for a hair cut (his best one yet!!)...
...before we rushed home to play with the "fake legos."  Note to self:  Make sure he never knows the difference between "fake legos" and the expensive real legos.  I impressed Brian by building a canon - and we both tried swinging the gyro bowl that was filled with cheerios to see if any fell out.  (They did which is probably why this "As Seen On TV" item is now in "5 Below.")

Hope was super cooperative during all of this!  She slept through the entire afternoon, giving me a block of alone time with Brian.  Hope has been blessing us with much longer stretches of sleep these days.  One evening she slept for almost seven hours!!  I kept thinking I should wake her up to feed her - but, seriously, look at how she has filled out this week...
I think it was fine to let her sleep!  

I can't believe that she is TWELVE weeks today.  Here are some of her photos from today...
  She smiles all the time, still nurses really well and coos a lot. 
 
The only struggle is her car seat.  She hates being in her car seat.  We just made some adjustments to it to see if that helps, but if not - I just bought a new seat to try.  Actually, the new seat is three pounds lighter.  Doesn't sound like much, but I'm sure it will make a big difference!  I can't get over how heavy the car seat is with her in it!  By the time she's out of it, I'll have some body builder's arms!!

I've been working hard on the big fundraiser over the last few days.  Well - let me re-phrase that.  I've been working hard sporadically during Hope's naps while Brian is at school or in the evening when they are asleep - basically, when I can.  Things are starting to fall into place, which makes me so happy. I can't believe this is really happening.  

I wanted to announce that the FIVE $500 event sponsorships that get the voice over commercial at the beginning and end of the evening are all spoken for.  However, there are still $500 event sponsorships available - and those will get advertisement on my blog and facebook page (both of which get a lot of traffic).  And there are still plenty of other sponsorships available - the ones I listed in THIS post... or you can make up your own sponsorship!  

Once I am ready to open the ticket sales, I will make sure to give plenty of notice so no one misses out. I am thinking I will schedule it ahead of time for a Saturday when most people are not working.  

For those of you who can't make it to the party but would still like to donate - I have information for you!!  The hospital has set up a spot online for this project.  If you click THIS link, it will bring you to the donation page.  Under the Donor Designation section, click the third option down:  Ability Playground.  You can write in the box at the bottom that this is in memory of Gavin Leong.  I will be getting updated every few days (starting Monday!) on the donation totals.  I can't wait!

It was brought to my attention that the starting donation on their site is $25.00.  If you would prefer to give less than that, you can give through "Gavin's Trust Project" online by clicking Donate Now and designating it specifically for the playground project.

Speaking of the playground project - I named the event!!

Gavin's Playground Project!!  Hope you can make it on April 5th!  And if you can't be with us, please say a prayer that it is a huge success.  Every child deserves to feel like a superhero... and a place to play that won't hold them back from being just that.



Thursday, February 20, 2014

The End Of The Story...

It happened slowly.  One night here... another night there.  A night when I heard new requests of extra playtime instead of stories - hearing, "Please, Mama, just 'five more minutes' of playing before bed!"  And even requests in bed for my made up (and very dramatic) adventures of Angry Birds vs Piggies.

Before I knew it... there were no more bedtime stories about Gavin.

Every night - from the night we got home from the hospital after Gavin died - he has requested that I tell him the story about what happened.  He was there for the first day - in the emergency room.  The day that shocked us all.  He was there in the hospital - to say goodbye.  I discovered over those months that he took in MANY more details than I ever would have imagined.  He noticed tubes and equipment.  He remembered the sign on the door and what was out the window.

And I discovered something else every single night over those months when he would say: "Tell me the story about how Gavin died."  I discovered that, in telling the story at his request, I respected his way of grieving.  Because that's exactly what it was.  His way of grieving.  His way of processing the unthinkable.  I never pushed my own agenda.  I never said no, even when I couldn't bear to tell him one more time about how the helicopter raced his brother to the hospital.  And why should I have said no?  His request wasn't coming from an adult perspective.  It wasn't morbid to him.  He just knew he needed it.  And I understood that I had to provide it for him.

Brian's emotional well being has always been my top priority since April.  I checked in with grief counselors and had Brian attend some "child life" therapy sessions.  They all agreed that he was managing his grief appropriately for his age.  I felt validated since, really - what did we know about what's right or wrong when it comes to childhood grief?

But that's just it.  Unless behavior is destructive or harmful - there is no right or wrong when it comes to grief.  

So now, we have different routines.  Sometimes there's a book in the playroom before bed.  Sometimes there's a "lay with me and tell me a story about when you were a baby" requests.  Sometimes we just giggle and I listen to him yammer on about Darth Vader.  But every night he still says goodnight to Gavin by pulling that "invisible string."  
Without fail.
I have had a few people ask me why I "let" Brian continue to sleep in Gavin's bed.  Or tell me that I should move him out... that it's not healthy.  My question back is - "Why?"  What harm does it do that this little boy wants to sleep in his big brother's bed?  Maybe he feels closer to him that way!  I can't imagine (in a million years) telling Brian, "Hey - no more sleeping in Gavin's bed from now on.  Back to your own room."  What would be my reason when he asked me "But, why?"  I wouldn't have an answer - because there is none.  To me it would be like someone saying to me, "Hey - no more wearing those lockets around your neck with your children's ashes.  It doesn't seem healthy."  

There's no road map for getting through the minefield that is left after you lose someone you love.
I just hope - many, many years from now - that Brian looks back on this time and feels that he was always "heard."  That his way of grieving and all of his feelings and every one of his needs were respected.

I believe we've reached the end of the story about that day back in April of 2013.  And I feel proud of Brian that he had the confidence and courage to express to us what he knew he needed.

~~~~~~~~~~~~~~~
I hope, too, that Brian looks back on all that was accomplished after Gavin died with pride.  The random acts of kindness... the charities... the volunteerism as a family... and, this upcoming event.  I hope he realizes that instead of giving up - pulling the shades - giving in to our grief... we gave BECAUSE of our grief.  And many, many others gave as well.

In 24 hours, according to my survey, close to 400 people are hoping to attend our Fundraiser/Party/Trivia Night.  (I'm still working on a name!)  I am close to securing a venue that can accommodate 500 people, which means that, once I am ready to start selling tickets, I would need to cut off ticket sales when it reaches that number.  I am working on getting catering.  And hoping for corporate sponsors to help us so we can say that all of the ticket sales and donations went directly to this playground project.  (More on that below!)  And I'm even working to get blocks of hotel rooms at a discounted rate for those coming in from out of town.  This is really happening - and it's happening fast.

Definitely keep watching this blog for updated information.  It's possible I will open ticket sales as early as next week.  They will be first come - first serve and may sell out, so be prepared!  I will give advance notice about a day and time before the ticket sales go "live."  Please take note that you need to purchase a ticket in advance to get in to the event.  There will be NO tickets sold at the door that night.

It makes me so happy that so many of you are excited about this night.  It will be a wonderful day for our family. 

~~~~~~~~~
Sponsorship Opportunities!

Please spread the word about these sponsorship opportunities to corporations, small businesses or anyone who would like to help this very worthy cause! 

$500 Event Sponsor:  Recognition as a major partner/sponsor of the event with the largest signage in the venue and announced by the emcee with your personalized commercial at the beginning and end of the night. Opportunity to offer giveaway or literature to each participant table.

**Update:  the event sponsors that would get the personalized commercials and signage are all spoken for!  BUT!!!  You can still be an event sponsor!  I will advertise all sponsors on my blog and facebook page, which reaches thousands of people!**

$250 Stage Sponsor:  This general sponsorship is a great way to support the playground project and see your name or company name displayed at the event.

$175 Bar or Buffet Sponsor:  No one will miss your support of Gavin and this playground project with your name or company name proudly displayed at the bar or buffet!

$150 "Round Sponsor":  Recognition as a partner/sponsor of the playground project with your personalized mini-commercial at the beginning of one round.

There will also be an opportunity for $50 Table Sponsors once I know how many tables we will have filled:  For a nominal donation, you can have your name or company name advertised on one of the tables.

Contact me through this blog or on the Chasing Rainbows Facebook Page if you are interested in any of these opportunities!



Wednesday, February 19, 2014

Come On Let's ALL Go Play...

This past October, I was asked to speak in front of several hundred administrators, department chiefs, lawyers and other leaders at the Nemours Leadership Institute.  Nemours A.I. DuPont Hospital for Children is where Gavin spent a lot of time throughout his life.  The two of us lived there for close to three months when he was very sick as an infant.  He was back there, in and out, for illnesses.  He was in the O.R. many times for various reasons.  We sat vigil by his bedside in the Intensive Care Unit several times, wringing our hands and praying he'd be okay.  He had incredible moments there - sitting up for the first time on the altar in the hospital chapel...and finding out his hearing had been restored.  

And then he died there...in the hospital we loved.  
In the hospital that loved him.

I was proud (and a nervous wreck) to stand in front of these professionals and tell Gavin's story.  (If you'd like to read my speech and see the accompanying pictures, you can find it HERE.)  But I was just as excited to have a little face time with Dr. David Bailey, the President and CEO.  I had an agenda - but once I had my shot, I chickened out.  Instead, I wrote an impassioned email to him that very night from home.

Here is that email...


**
October 1, 2013

Hi Dr. Bailey,

It was such a privilege to meet you this morning at the Leadership Development Institute.  I was honored to have been asked to speak.  And, as a parent, it felt special to get a small peek behind the curtain!  I have always appreciated the hard work and dedication of the doctors, nurses, social workers and others we have had direct contact with.  But I also have a new appreciation for all the thought and effort that administration puts into helping the hospital run smoothly.  This affects patients just as much.

I wanted to chat with you this morning, but I didn't think that either of us would have the time to devote to a topic that is so, very important to me.  I decided to email you and, when looking up your email online, I noticed your quote:  

“Everything we do must be for the child. If it’s not, then we need to reconsider why we are doing it.” 

I am so glad you feel that way.  Because as much as I LOVE your hospital (and I do), there is ONE area where I think it has fallen short.  The playground.

I don't know if anyone has ever suggested creating a new playground before.  I would imagine, with all the other expenses and new construction and budget cuts it might not have been seen as a priority.  Maybe people have thought, "If it ain't broke, don't fix it."  But herein lies the problem - I feel like it has always been broken.

When you walk up and down the halls of your hospital, you're sure to see lots of wheelchairs and walkers and kids who are very dependent on their caregivers.

When you walk onto your playground... you don't see a lot of those kids.  Maybe you see their siblings... or kids that are more "able" to climb up the steps of the jungle gyms.  If you do see those kids, they are watching from the sidelines.

One might argue (like maybe ME!) that the kids that really deserve a lot of joy that an "all abilities" playground can offer are those kids that are trapped in bodies that have failed them - or chairs that can't climb stairs.  Your playground has failed those children... miserably, I'm afraid.

I mean no disrespect when I say this, but if the playground isn't changed along with the gorgeous and modern expansion of the hospital... it would be like leaving your plastic garden gnomes and pink flamingos on the lawn of your newly constructed mansion.  They may look cute to some - but they just don't "fit."

Not to mention, (and again - no disrespect!) DuPont is a hospital that is well known for it's excellent orthopedic department and treatment of children with various physical disabilities.  It almost seems shameful that one of the most important areas to a child - the playground - isn't accessible to most of them. 

This is definitely a topic of conversation among parents of special needs children.  You can't imagine how it feels to wheel your child right by a bright and happy looking playground - at a hospital where he or she is supposed to "fit in."  It's the worst kind of sucker punch.  I want to help you help those children.  Because, as you say, "Everything we do must be for the child..."

The playground issue is SO important to me that I'm willing to help - even though my son has died.  I know that he would want this - I wish I had fought more for this while he was here.

I would be THRILLED to have a talk with you about the possibility of creating an "All Abilities" playground.  I have a ton of ideas swirling in my head.  If there are funds that could be dedicated to a project like this, great.  If not, I have discovered that I am quite a talented fundraiser.  After Gavin's death I raised well over $8,000 for your Child Life department - in addition to box after box of donated toys and supplies and musical instruments that are, truly, too numerous to even quantify.  They said every day was like Christmas.  I also raised $20,000 in 85 days for the Chester County Intermediate Unit as part of "Gavin's Trust Project" - ensuring that all of Gavin's friends in our area would have what they needed in their classrooms and in their home therapies.  I recently raised $6,000 in a week to create a newly redecorated children's waiting room in the Paoli Hospital Emergency Room.  The day that Gavin was brought in, Brian sat in their small waiting room with one broken toy and a TV.  Soon, inspired by Brian, the room will have lots of fun and engaging toys, new paint, wall mirrors and seating areas in Gavin's memory.

It would be a dream come true if I can help make this happen.  We called Gavin our Superhero from the second day of his life.  I hope that one day soon, your hospital can unveil a playground where ALL kids can feel like superheroes.

Thank you so much for your consideration!!

Most sincerely,
kate leong
**

You can't imagine my elation when I received a reply email from him - THE NEXT DAY!!  This very busy man who is head of a pediatric hospital (that is undergoing a huge renovation) not only wrote back to me... but he took my concerns very seriously.  Among other things, he wrote:

"Your passion, experience and willingness to commit will almost certainly make this come to life more quickly than it would otherwise."

You can't imagine my elation AGAIN when, after the holidays, I received an email from a director at the hospital.  She wrote that she had been asked to contact me on Dr. Bailey's request.  He decided to proceed with trying to make the playground a reality (YAY!!!) - assigned people to explore the idea - and wanted ME to be part of it!  I'll be attending my first meeting with an executive in mid-March.

Friends... this is huge.  An all abilities playground is something I know Gavin would have loved.  I wish I had advocated harder for this when he was alive... but to advocate for kids like him - in his memory - feels wonderful.  My Dad always taught me that when you want something... sometimes it's as simple as asking.  That's been true most of my life.  I'm so grateful to Dr. Bailey for hearing me. 
 If this playground becomes a reality - it will be a dream come true.

Soooo...curious how this involves all of you?

I am planning a party for all of us.  Imagine an event where we can all meet each other!  I will be there, along with Ed and Brian and Hope.  And lots of other people that are part of Gavin's story will be there, too.  I know some of you have connected with other readers through my journal - and this would give you a chance to meet in real life!  Just the idea of that alone sounds very cool to me.

But wait - there's more!!

I'm going to have a "Trivia Night" run by a professional.  Bill McMenamin, the owner of McM Entertainment, is going to run the trivia - and lead the fun!  His events are always a blast with music and laughing and friendly competition between teams of ten at round tables.  Check out this short video of one of his events - a musical break between trivia rounds had the entire room singing!

Here is my vision.  I would sell tickets ahead of the event for $25.00 (that is all you are required to spend to attend the adults only party!) with the proceeds going to help build the All Abilities Playground at "Gavin's Hospital" - DuPont!!
 I envision a really fun night where Ed and I can mingle and say hello to many of you who we feel like we know...and many of you that we DO know!  I picture a huge space (that I am praying someone will donate so we can keep our costs down!) FILLED with people who all have one thing in common:  they all love Gavin and want to help celebrate his life on the one year anniversary of his death.  Not sure where it will be yet, but somewhere outside of Philadelphia area in Chester or Montgomery County, PA.  I see food (somehow, someway!).  I see raffle prizes that are donated by local businesses and more.  And I even see me asking local hotels to block rooms for a discounted rate for those of you who would want to come in from out of town.  And I totally picture any venue, caterer, business and/or corporate sponsor being THRILLED with the advertising they would get both that day and on this widely read blog.  I have a vision, people.
Listen - I know this seems like a huge undertaking.  I have an eleven week old baby for God's sake!!  But I'm telling you - I don't know why, but I just KNOW that I can do this.  I KNOW I can make this happen.  I KNOW it will be a success.  I should have done this when Gavin was alive.  But I can do it now - for him and for all of the kids like him that have been wheeled or carried or walked right past that playground for too many years.  I owe it to Gavin.

You know... I even see this happening once a year.  Kind of like a "Chasing Rainbows Reunion!"  How fun would that be?

I'm still working out all the details... including if there can be tax write offs for donations, how to sell tickets online, how people can donate if they want to help but can't make it to the party...and even a name for the event.  But today I need your help with something critical and time sensitive.  I need to get an approximate idea of how many people are definitely interested in coming.  Don't worry if you really want to come but don't have anyone to come with.  We can assign individuals to a team!  It will be a fun way to meet new friends!  Or, you could gather ten friends and make your own table.

But for right now - I just need to know approximate numbers.  I have created a survey through "Survey Monkey" so I can keep track of the responses.  I will leave this survey up for a week so as many people can answer as possible.  So check your calendars - talk to your friends - start securing a babysitter - and let me know if you can make it!  As soon as I get a good number count, I will start making real plans and selling real tickets and smiling from ear to ear.  What a 44th birthday present this is going to be come April.

Thank you for filling out the survey below!  (You will only be able to answer once.)
Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.


One last thing.  If you are a local business that would be willing to donate your space...your services...or gifts for raffle prizes, please message me using the "contact me" bubble on the right side of the page.  Or, you can private message me on the Chasing Rainbows Facebook page.  Obviously, we would prefer for 100% of the ticket sales and other donations to go right to the playground project, so we will really need help.

We're going to take back April in the biggest way possible.  I really hope I get the chance to meet you this April 5th.
(p.s.... I love you, Gavin.)



Monday, February 17, 2014

Change Is Hard...

So... we have a new look.  
I will tell you - it was not easy to even THINK about changing my blog header.  Adding Hope's photo was the easy part (I still need to write her story behind her name) - but changing the last header I made when Gavin was alive... that part was pretty dreadful.  But change is necessary in life... even when it's painful.  Actually - sometimes the painful changes are the ones we need to confront the most.  I know this for sure.

I still need to update the text that is behind each of our names... and I will.  Another painful change I need to confront.  Baby steps.  

Are you wondering who the masterminds are behind my header?  A HUGE thank you goes to the compassionate and patient Susie Conrad of Susie Q Designs.  She's a stay at home Mom and loves to create with graphic designs.  You can find her HERE.  Or you can just get to know her and her adorable children over on her blog, which you can find HERE!  And thank you again to Caitlin Domanico for taking the silhouette photo of me and Hope... and Lauren Naldzin for the family portrait that was taken the very day we brought Hope home from the hospital.

There's another big change, too.  After careful thought and consideration...and a few tears shed...we decided not to send Brian to the Kindergarten Center.  May not sound like a big deal if you don't know the whole story, so here it is in a nutshell.  The Phoenixville Area Kindergarten Center was the first school that Gavin went to along with Miss Sara as his aide and buddy on the bus.  He was in a special education pre-school that used one of their classrooms and did SO well there.  Gavin was embraced by everyone - the kindergarten students in the building and the staff.  We were really looking forward to him starting Kindergarten there before he died.  He was going to be mainstreamed with a regular-ed Kindergarten class with an aide of our choosing.  It was all picture perfect...but then, well, you know the rest.

We always knew that Brian would attend the Kindergarten Center, too.  Not because of Gavin - not to place him in his "shadow" in any way - but because it's a wonderful school with a loving staff and a strong academic curriculum.  We knew he would be cared for there...and do well there.

The main reason we changed our mind?  Consistency.  Since Gavin died, we have tried to keep Brian's world as consistent as possible (not counting the complete disruption of a baby sister - which he is handling beautifully!).  The school we decided to send him will be where he will stay from Kindergarten through Eighth grade.  Not only that, but several of his friends from pre-school will be going to the same school!  

I contacted the principal of the Kindergarten Center personally to tell her of our change of heart.  I wanted her to know how carefully we thought about this...and how grateful we will always be for everything they did for Gavin and our family.  We really love that school - and the staff.  This wasn't easy for me at all.  She was nothing but gracious and understanding.

Ed and Brian had the day off today so the four of us went on a personal tour of the new school with their Principal.  I had gone there a couple weeks ago and had a great tour with two of the teachers and I fell in love.  Today I had everything crossed that Ed...and especially Brian...would too.  Just as I suspected, they did.  Brian is very excited to start there in the Fall. Hope was thoroughly unimpressed and slept through the whole thing.  

After the successful tour, Ed took us to Dim Sum in Chinatown to celebrate! 
It was Hope's first time in Chinatown... but once again, she was thoroughly unimpressed and slept through the whole thing.  
Funny story - when I first met Ed, I told him I didn't like Chinese food.  He said that was because my only experience was "Mall Chinese food" (and he was right).  "Card carrying Asian people don't eat 'Bourbon Chicken', Kate" he always told me.  It was in Chinatown - for Dim Sum - that he introduced me to authentic Chinese food and I've been hooked on the food...and the man...ever since.
 We stopped at the grocery store before we headed home so Brian could get his favorite Mango and Lychee puddings.  He was psyched!  And, as usual, Ed got all kinds of things that I can't pronounce and wouldn't know what to do with.  He definitely knows what he's doing in the kitchen, thank God.  And boy, can he cook.  (Trust me - I know how lucky I am!!) 
 Hopefully, Brian will pick up the cooking skills from his Daddy.  He'll make a woman very happy someday if he does!!


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Header design by Susie Q. Designs