I have said this so many times, but I'm happy to say it forever. We had the best supports in place for Gavin... for Brian... and, quite honestly, for us. From the beginning of Gavin's life working with Gavin's first NICU nurse... to the end of his life working with very gentle PICU doctors. But the in-between...those years with Gavin's therapists...will be etched in my mind forever. And for the last two and a half years of his life - that bus was driven by Jessica Cratty. Jessica was Gavin's service coordinator, which means she was in charge of his case and many of the decisions that were made.
Over the years, Jessica and I developed a great relationship. I knew I could call her for anything... ask her anything... propose anything... she was always so receptive. If I do say so, Gavin had the best team of therapists that ever was - and that was thanks to Jessica. She also held my hand (that's pretty much almost literal!!!) when I was told that Brian would need speech therapy and teacher services and he'd be going to school for four days a week. That was hard...but, once again, Jessica never steered us wrong. She suggested a school...met me there to see it and meet the teacher, Miss Laura...and it turned out to be a wonderful experience. She even set it up so that Brian would have familiar therapists!! Miss Maggie, Gavin's speech therapist, was now Brian's! And Miss Janna, Gavin's teacher, was now Brian's (for extra, one-on-one teacher services)!
Jessica recently had a baby - her first. Proving that you really never know what life will throw your way... her little girl that was showered and anticipated and decorated around was born...a boy!!! They named their little son Myron to honor two special men in their family.
Is he a beautiful baby, or what???
She even let me hold him for a while which either delighted baby Hope in my belly - or made her very jealous. She was jumping all over the place under Myron's little feet!
Brian couldn't resist his cuteness, either, as you can see...
I've had two newborn infants in my home over the past month - Gavin's teacher, Miss Megan with her baby Maggie... and now Myron. Both times Brian was so, so good. He either played independently or brought over a toy or two (looks like Myron likes Darth Vader, too). I don't think I have to worry too much about Brian once Hope arrives!
All of the people that made up "Team Leong" mean so much to me. The therapists, the teachers, the service coordinators - everyone. And Jessica's visit meant a lot to me.
I'm so grateful that these connections remain unbroken after Gavin's death.
Today I'm going to update you on the exciting things that have happened since I started "Gavin's Trust Project." If you're unfamiliar with what that is, click HERE for a detailed explanation and information on how you can get involved! As of today, Gavin's Trust Project fund is up to $19,300. To put this in perspective - that total was raised in 85 days... and is the sum of many, many small donations. There were a few large donations under a thousand dollars - but truly, this was a lot of one, five, ten and twenty dollar donations that added up. To say that I am grateful - and humbled - and proud of Gavin's legacy would be the understatement of the year. Perhaps the century. (**Note** That total is strictly PayPal donations. I forgot to ask about the mail in donations, but I know there's at least a few hundred dollars more! As soon as I find out, I will update the total and let you know!) Here is an update I received from Nancy Saul, the supervisor at the Chester County Intermediate Unit that is overseeing Gavin's Trust Project:
We have put through a few orders primarily feeding equipment and items that will be kept here at the IU for loans.
We are all ready to go with the orders for our program sites at the Kindergarten Center in Phoenixville, the classroom here at the TCHS Brandwine site, the Early Childhood Wing at the Child and Career Development Center in Coatesville and the TCHS- Pennock's Bridge. Most of the orders consist of specialized toys, assistive technology for communication including 2, 3 and 4 compartment communicators, switches and cheap talks. We also have ordered therapy balls and a step rocking boat. The order for the Coatesville site alone is close to $4000 and $2500 for the Phoenixville classroom. We are ordering over a 150 items. These orders will be put through closer to the beginning of the school year so they are delivered when we are sure people are in the buildings.
We have kept aside several thousand dollars to allow for purchases necessary for individual students as they come into the program.
Again we thank you so much for the gift of money for all the wonderful extras we can provide for our students. It is truly a blessing.
Nancy Q. Saul, M.A. CCC-SLP
Supervisor Preschool Special Education
When they do make purchases for individual students, I asked that they handle it with trust. Obviously, the best case scenario is that the family uses the item until the child outgrows it... and then returns it to the Intermediate Unit or through their child's teacher or therapist. But I know what it's like to be a special needs Mom - to have so much to think about, handle, deal with and keep track of. I want all of the equipment or devices purchased to be given with love. It's part of my own personal gift giving philosophy - if you give a gift with any attachments or expectations, you make the gift about you... and not about the actual beauty in giving. So, with that in mind, a beautiful card was created by Jessica Cratty (Gavin and Brian's incredible service coordinator from the IU) that will be attached to each item purchased for an individual. It will not only serve as a memory jogger... but hopefully it will inspire them to learn more about Gavin's life and journey of inspiration. And maybe they will also be inspired to pass on the goodwill to someone else somehow. Here is a photo of the card - I can't figure out how to make it bigger, so if you can't read it scroll down below to see what it says.
This item has been made available for use through the
Gavin’s Trust Project: Making the Impossible Possible
The Gavin's Trust Project was created by the Leong family as a way to honor the unique ability their son had to change the lives of those around him without ever uttering a word. This item was thoughtfully purchased to help CCIU PSE teachers and therapists provide materials for students who may not have been otherwise able to afford the expense of, or had access to, special needs assistive technology devices and materials.
The greatest “Thank You” that you can give for the use of this item is to honor Gavin’s memory by returning it to your child’s teacher or therapist, once your child no longer has a need for it, so that another CCIU PSE student can benefit from the
Gavin's Trust Project.
To Learn more about the Gavin's Trust Project, or Gavin’s life journey, please visit:
Chasing Rainbows at http://www.kateleong.com/
If you'd like to see some of the more specific items purchased, I have some of the items listed and pictured below. But before you look, you should know one thing. It is not always easy to get even one of these items - let alone MANY! Working within a small budget means that coordinators need to be very selective in what they buy... often meaning that they use items for years and years until they the tape and glue stops holding them together. (I'm only half kidding!) To be able to purchase all of these items, some in multiple quantities - which will last for years in classrooms all over the county - is such a big deal. It really is. We should ALL be very, very proud that we have, and continue to honor Gavin in such a beautiful way. Together we are making the impossible... possible... for kids just like my sweet little boy.
Click each item to read more about how it's used in classrooms and homes for therapeutic purposes!
Thank you, once again, for your generosity and making this dream a reality for me. It brings comfort to me to be able to help others - especially kids like Gavin that are in our immediate area - during this time of intense grief.
You are welcome to contribute to Gavin's Trust Project at any time - it is always open on the right side of my blog. You can click the "Donate" button to give through PayPal - or you can mail a check to the address provided.
Also - I am planning several events through September to help me get through Gavin's sixth birthday month and what would have been the start of Kindergarten for him. I'll be announcing that soon and all are invited to join in the giving celebrations!!
I remain honored that so many of you care about our little boy... and our now growing family.
Never lose hope. One little boy who never uttered a word is now changing the world. Makes you feel like the impossible is never really impossible, doesn't it?
Today has been one of the hardest days since the hospital for me. The grief that washed over me was unexpected and all consuming that I actually - gulp - asked for help.
The trigger? Going to Gavin's classroom to clean out his cubby. Sure, I could have had someone else do it. Gavin's teacher even offered to leave it all on my doorstep so I wouldn't have to go in at all. But I wanted to do it. I needed to do it. And I'm glad I did... but boy, it was hard.
The one thing that made it a little bit easier? I was also meeting the wonderful women from the Chester County Intermediate Unit that have helped me with Gavin's Trust project. Nancy Saul, who will be overseeing Gavin's Trust Project... Jessica Cratty who was Gavin's incredible service coordinator and a great support to me over the years... Miss Megan, Gavin's teacher... and Deb Hiller who makes sure that all the students in the county have everything they need from a seating, equipment and assistive technology standpoint.
On behalf of the many generous readers of Chasing Rainbows, I presented them with a check for $15,000. I am hoping it is the first of many large checks. (You are always welcome to give - encourage your employers to match - tell your friends to donate - and spread the word!) The latest total is over $18,000 - but I left some money in my PayPal until it becomes another large check for me to present. $15,000 is not a shabby start. To every one of you who gave - from $1.00 to $500, thank you. Collectively, we are managing to make the impossible... possible for so many kids like Gavin.
When we were deciding where to stand for this photo, some great ideas were thrown out - outside in front of the school sign... in front of flowers... in front of the cubbys... but I had my own idea. It only made sense to me to stand right in front of the sink. Gavin LOVED that sink. And it was there, ten days before his death, that he made the connection with a communication device - asking for the water to be turned on in that very sink behind us.
He was on his way to great things.
It was very difficult to see his little friends. One little girl in particular, who reminds me of Gavin in many ways. She loves lights and music - and when I got there, she was laying on a mat playing with a toy that Gavin loved. I got on the floor with her to chat and play and was so happy to get some smiles and some vocalizations from her. Every morning when the bus would arrive, we would see her little face in the window - so happy to see her buddy, Gavin.
Gavin's walker was still there - along with some speech therapy items that we've used with him for some time. Ed and I gifted all of those things to the classroom so they could be used to help his classmates. His cubby was filled with his favorite cup, a change of clothes, the chest strap that my Mom made that was a wonderful tool to support him in chairs (and on rides on the boardwalk!). Looking at every item broke my heart.
And then, Miss Megan showed me the butterflies. Gavin's friends each made him a butterfly...
She also gave me a pile of papers and artwork and his laminated name card from his cubby and his birthday cupcake that was on the bulletin board and more. Here are some of his works of art...
After I hugged everyone goodbye and walked to my car... carrying a bag of the things he left behind... the tears started to flow. And they wouldn't stop. All the way home... all the way inside... all the way to Gavin's room to the rocking chair where I once held him and fed him and sang to him.
I knew the tears were good for me - but I also felt a little bit out of control. The more I tried to collect myself, the worse it seemed to get. I texted my sister, Bean, and bravely asked for help. I shocked even myself. I didn't know how I was going to get through an afternoon with my adorable, energetic, full of questions and constantly chatty little Brian. She texted back that she was on her way. I breathed a sigh of relief... calmed myself down and by then it was time to pick Brian up from school.
Here is his school picture from this year that was just sent home. He's wearing the shirt he wore to his big brother's funeral.
Bean saved me today. She really did. Brian had a great time with her. They went to the carwash, the playground, walked her dog, Daisy, and took a trip to the grocery store. Brian even ate his very first Ice Cream Sandwich at Aunt Bean's house and I heard about it all night. She really saved me today. It's worth mentioning twice.
I had a scheduled ultrasound for tomorrow, but called to see if I could be seen today since I had some free time. I had some worries that seemed amplified given my emotional state today. I knew if I saw that everything was okay with "Project Hope" - it would help me feel just a tiny bit better.
I was right. The baby looked great.
Heartbeat was strong, growth was better than expected and we even saw some movement. You can see it here on the video...
Home again, with some time to myself, I tried to accomplish something. Anything. But everywhere I turned... I saw more of what he left behind. Every room had a reminder. Every other day these things made me happy. His toys in the playroom... his shoes perfectly lined up on the laundry room shoe rack... his favorite books... his art projects in the window. But today, they were daggers to my already fragile heart. Tomorrow, I hope, I will love seeing them once again.
The things he left behind don't matter, though. It's something none of us should worry about. Gavin left behind so much more than things. A family who loved him so much. A life that should have had so many more years. Progress yet to be made. A voice that I know we would have heard. And a legacy that is unmatched by many adults.
Her real birthday is tomorrow and she'll be spending the day with her parents.
Gavin, Brian and I took her to a (kind of chaotic!) lunch at Nordstrom before sending her home to enjoy a long birthday weekend.
We love Sara, as you all know, and are grateful for all she does for us...and especially for Gavin.
We're also super proud of her! She is currently in a Master's program at night - and was just accepted to Penn State's MBA program which starts the same day Gavin starts Kindergarten in August! She's a smart cookie. And we were lucky to find her... and lucky she's stuck around for over a year now!
I also was happy to send her home because everyone in our house is sick. We all have colds and the boys both stayed home from school yesterday and today. I feel pretty awful. Moms aren't supposed to get sick!!
Last night, Ed and I attended an information session for parents of prospective students at our local Kindergarten Center. If you recall, this is where Gavin's preschool classroom is housed...and also where he will attend Kindergarten starting August 26th! I was already impressed with this school before last night, but Ed and I drove home feeling so sure that this is the right place for Gavin (and probably Brian down the road) for Kindergarten. We were able to go into two different classrooms and hear from teachers about the curriculum, the kindergarten readiness checklist, hear tips about how to prepare our children for their first day and more. I was excited when teachers recognized me as Gavin's Mom - because they sometimes invite Gavin into their classrooms and say hi to him as he walks in the hallway. Gavin is so loved at this school and I know he will continue to be well educated and nurtured there this Fall.
I came home and was eager to write a thank you note to Brian's teachers - Miss Laura and Miss Morgan - his speech therapist, Miss Maggie, and the wonderful service coordinator who has lined up Gavin and Brian's schools, teachers and therapists for the last few years - Jessica Cratty. Why Brian? Because as they went over the things that kids should know coming into Kindergarten, Ed and I felt so proud when we realized Brian was WAY ahead of the game! Every morning the first thing he and his classmates do in school is practice writing their names. It's all he wants to do at home, too! And Maggie works on grammar and concepts like "behind" and "under" and "through" which he has really mastered. And Jessica has never steered us wrong - getting Brian into his wonderful classroom and Gavin with Miss Megan, where he's doing so well. But to think that Brian still has another whole year before he turns five and will be headed to Kindergarten - I can only imagine how impressed they will be when he arrives! We feel so lucky that he has such a dedicated team and I had to write to let them know.
Between the boys teachers and therapists and Miss Sara... we have so much gratitude for all the members of "Team Leong."
Have you thanked your children's teachers today?
Our butterfly experience is continuing to fascinate us! Today we took the Chrysalids out of the cup that they came in. We watched them as larvae... and then as caterpillars... and soon they all crawled to the top of the cup and hung upside down from a paper disc. They would shake violently and spin silk and soon they were completely enveloped inside an iridescent chrysalid. I was scared to death to open the lid and pull out the paper disc with the four chrysalids attached.
Turns out they are really stuck to that paper and my fear that they'd fall off never happened. I had to pin the paper disc to the side of the mesh "Butterfly Habitat."
Soon they will begin to emerge as butterflies (it's such a miracle to watch this) and will live out their life span inside the habitat in our home! They say the lifespan is 2-4 weeks. We'll see what kind of butterfly parent I am - I'm shooting to keep them alive for all four weeks. Fingers crossed.
This afternoon we got a beautiful and unique wedding invitation in the mail that made my day!! Our nephew, Dan and his fiancee, Miranda, are getting married this March in upstate New York and we can't wait! Miranda hand made ALL the invitations (can you imagine?!?) - and it's even more beautiful in person...
I can say without question - this is the most beautiful and unique wedding invitation I've ever received.
Makes me want to do it all over again. Minus the torturing bridesmaids with dresses that say "Despite what you're told by the shop and the bride - you will NEVER wear this again."
I think if Ed and I got married again, we'd focus less on the over rated things - and more on the vows. And my hair. You know, the important stuff.
This morning we met Gavin's new teacher, Miss Megan!
Gavin's service coordinator, Jessica (who has been amazing to us for the last two years!), arranged for us to have a private tour of his new classroom and meet with Megan.
I have to say - I was so, so impressed. The classroom is huge - especially since there will only be five students in Gavin's class! There's plenty of room for walkers and wheelchairs and toys and tables - it's very spacious. Megan's still moving in, but it's already filled with lots of great toys and activity centers - an area for circle time and sensory activities - and plenty of windows which makes the room so bright and happy. There's also a private little bathroom for the kids right in the classroom so they can work on toilet training!
Here's a photo tour for you...
Megan and Gavin hit it off right away! One of the tell tale signs that you're "in" with Gavin is when he touches your face around your mouth. It was so comforting to me to see him do that to Miss Megan.
Even though I "corrected" him for swatting her face, I secretly was so happy that he expressed himself in his own way. I could tell he liked her. And so did I! But I didn't swat her face, don't worry. I figured that might have been awkward.
I saw many familiar toys around the room - and some things that Gavin recognized from his therapists. Like these colored ribbons that Janna used for color recognition.
I'm hoping that I'll find toys around the house that I can donate to Gavin's classroom. They are specifically looking for cause and effect toys.
Brian had a lot of fun exploring his big brother's new school! He investigated every corner and every toy. Jessica even sat with him and they did an art project with Dot markers - one of Brian's favorite things!
Gavin's first day will be Thursday, August 23rd. Miss Sara is very excited to accompany Gavin as his aide and buddy - and so are we! The school hours are from 8:55am - 3:25pm, which is a very long day. Too long for Gavin, in my opinion! I want to ease him into that long of a day. It's perfectly acceptable to pick them up early, I was told, so I plan to do that probably right after lunch.
We don't have the bus schedule yet - but hopefully it won't be too early of a pickup. The school is exactly six minutes away by car! All five students and their aides (if they need them) will be on the bus together. I spoke with the transportation company and they assured me that they have everything they need to tie Gavin's wheelchair down and strap him in properly. And they'll pick him up right at the end of our driveway! She also told me that we're all welcome to come visit the bus depot and get acquainted with Gavin's actual bus before the first day of school. I think we may do that - it could be fun for the boys!
It's all getting very real. As soon as we got home, Miss Janna and Miss Maggie arrived for Gavin's final IEP in my house. All of Gavin's therapists wrote goals for him as he "graduates" into his new school...and one of them he already met just recently! Feeding himself! I'm really confident in my decisions to keep Gavin home until now - and send him to preschool this Fall. This blog is going to be blowing up with entries about breakthroughs...and progress...and new friends.
