Tuesday, May 14, 2013

Building a Legacy...

When you read an obituary, you often read a list of accomplishments that become the lasting legacy of that person.  Accolades, work accomplishments, awards... all things to be proud of, for sure.

Gavin has been hard at work building his legacy since his birth.  We don't have any awards hanging in the house... and he wasn't alive long enough to list work promotions or children of his own left behind. But I would argue, respectfully, that Gavin's lasting legacy is far greater than most adults.

He leaves behind a legacy of hope.  Of triumph over tragedy.  Of never giving up.  He inspired people to believe that nothing was impossible and he drove that message home by proving it time after time.  To be the mother of a child who leaves behind such a powerful legacy is humbling.  I feel grateful every day to be his Mother.  And I feel heartbroken every day that he is no longer here with us - to hold, to encourage, to play with and care for.

One of my coping mechanisms (besides writing) has been trying to keep "doing" for Gavin.  It became second nature for me to spend most of my time advocating for him, researching about syndromes or genetic testing, finding new ways to help him... and, of course, documenting everything along the way. The past two weeks that I've been working on "Gavin's Trust Project" have helped me immensely.  It has made me feel close to Gavin again.

Since I posted yesterday's blog entry about the project, I have sat back with my mouth hanging open as the donations rolled in.  I pressed "publish" on the post at 10:25am.  By 11:55am, it grew to $1,927.  By 5pm - $5,797.16.  At 11:25pm before I went to bed - $8,704.20.  The next morning, at 10:25am - the 24 hour mark - Gavin's Trust Fund had $11,237.36.  And at this very moment, 8pm the day after it started, the fund has reached $12,931.69!!!!!!!

I am so, so grateful for the generosity of so many.  From the large donations... the $500, several $100s... I am grateful.  For the small donations... the $1s... $5s... $10s... I am, in some ways, even more grateful.  This grand total (so far) is made up of many, many people who gave a small amount of money.  It warms my heart to know that so many of you have fallen in love with Gavin.  He just has a way of grabbing people's hearts.

I'd like to explain a little more about how Gavin's Trust Project will work.  I hope I'm able to express this well.  And I hope it answers any questions you may have about where your money will be going and how it will be used.

First of all - I named it "Gavin's Trust Project" for a very good reason.  A lot of trust is involved from beginning to end.  YOU have to trust ME when you reach into your wallet to give.  I thank you for that.  I will be transferring the money from PayPal to my bank account so I can write a check to the Chester County Intermediate Unit.  A supervisor at the Intermediate Unit will be overseeing the Trust and will allocate the funds as they are needed.

I have specifically asked that the funds be used to help children serviced by the Chester County Intermediate Unit in their Pre-School Multiple Disabilities programs.  So, how does this look in examples?  Let me tell you...

Programs in the Home:

When Gavin turned three his overprotective Mommy (played by me in this example) wasn't ready to send him on a bus to school.  I pushed to have everyone come to the house... his therapists and a teacher.  And they did.  I want to ensure that Gavin's Trust covers children with multiple disabilities that receive services in the home (not just in the classroom setting).  That means if a parent needs something to use at home for their child... or a therapist needs a device or seating to use in the child's home... they can ask for it to be purchased using Gavin's trust.  Here's a good example - let's say insurance covered a walker for Gavin.  And let's say by the time all the B.S. and red tape and ordering turnaround was worked out - he outgrew that walker.  Insurance won't just cover a new walker - you have to wait several years in between purchases of equipment.  This happens all the time.  (It happened to us with his wheelchair.)  So, Gavin's trust could pay for that walker so the child can continue to progress and not bankrupt his parents!  
But here's the catch.  If an item is requested for personal use by a family for a child - they have to promise that when the child outgrows or doesn't need the item anymore that they'll return it to the Intermediate Unit.  We want to be sure that all items are circulated as a way to keep paying it forward.  That involves a lot of trust - and maybe some items will disappear.  But in my eyes, this is more about giving and blessing those innocent children than it is about sweating the other stuff.

Multiple Disabilities Classrooms:

Gavin's first experience with school (outside of home) was Miss Megan's classroom.  It was a brand new multiple disabilities classroom - and Gavin was one of the first kids to go through.  This meant that a LOT of thought was put into his and his classmates needs.  Everything they chose was tailored to each child - seating, devices, equipment - so they could reach their potential.  I was so, so impressed - and they were soon impressed, too, as Gavin flourished.  Currently, there are 2-3 classrooms in our area like Miss Megan's.  And they will soon be opening more classrooms, which is so exciting.  Deb Hiller, who is the Occupational Therapy Consultant and in charge of choosing everything for the classroom set ups, had been so stressed about having enough for the students.  Not just in the current Multiple Disability Classrooms - but in the future ones about to open.  She can stress no longer.  Gavin's Trust Project can help ensure that each classroom has what they need to ensure that their students flourish like Gavin did.  You may have an idea, but if you don't - this is such a HUGE blessing to an underfunded agency who just wants the best for kids like our sweet son.
But here's the catch.  And this isn't really a catch as it's part of their already established policy.  If a therapist or a teacher receives an item through Gavin's Trust Project - and then quits her job - all items go back into that "closet" so they can continue to be recirculated and help kids along the way.

"But Kate, what about kids that are in need outside of your area?  What about helping my child in particular?  Why don't you expand this into a foundation and help kids all over the country - the world!?"

My answer is this.  To expand this would create a lot of complicated issues.  Deciding who gets what... choosing one child over another... fundraising each year to keep up a "foundation"... it's all too much.  I know my limitations.  I also know that I am a Mother first - to Brian and this new child.  I don't want to expend extra energy on a project at this time that would take time away from them.  Plus, please don't forget, I am still freshly grieving Gavin.  I am tired.  And... I am so, so proud of what I have accomplished (with Gavin's help from above) in this trust.  And I'm so, so happy that it will help the many, many kids that will go through the program that he went through.

"If I made a large donation, is it tax deductible?"

Yes.  If you would like a tax form from the Intermediate Unit, please contact me through the blog and I will email it to you.  I've been advised that you should also print out your PayPal receipt and hold onto that.

"Are you going to stop at a certain amount?"

No.  The donate button will live on the right side of my blog indefinitely and anyone can give at any time.  I will not be pressuring or campaigning for donations after this point.  Each time the fund reaches a certain amount, I will write a check and forward it to the supervisor in charge of Gavin's Trust Project.

I hope that explains the project a little more!  I know it's important (and fun!) to know where your dollars are going.  I will be keeping you in the loop as I am given information about how Gavin is helping his friends.  I am so proud of our little superhero.  Saving the day yet again.

It has been a very interesting day.  Besides watching the Trust Project total rise... and rise... and rise... we had a special visitor.  Michael Vitez, a Pulitzer Prize winning journalist from the Philadelphia Inquirer, contacted me a couple weeks ago and told me he wanted to tell our story.  My blog had been passed along to him which is what prompted him to reach out.  He spent close to two hours here this afternoon, along with a photographer.  As you know, I love talking about myself.  Just kidding - I hate talking about myself.  (But I don't mind when you talk about me, so feel free.  Kidding - again.)  I love talking about Gavin's journey so it was definitely my honor.  Michael writes humanitarian stories that are inspiring and uplifting, so I was extremely flattered that he wanted to speak with us!  Check out his website and his books here.
The story may run this Sunday or next in the Inquirer here in Philadelphia.  I'll make sure I post the link to it online when it comes out.

In other news - I need you.  All day I have been having severe lower back pain and some stomach issues which, if you're a woman, makes me think only one thing.  I am trying to stay calm... to breathe... to believe... but the truth is, I'm a bundle of nerves.  My anxiety is very high.  Tomorrow morning at 9:30 I have another ultrasound and hopefully I will be posting another glimpse of hope.  Please send me positive energy... calming vibes... happy thoughts... and intense prayers that everything is fine?  I am so... scared.

If you're wondering, losing a beautiful little boy at 5 1/2 just three years after losing a daughter at 5 1/2 months... finding out you're pregnant... grieving while parenting a happy 4 year old... and panicking over every little ache and twinge... if you're wondering how that feels... it sucks.  All of it.  Big time.  

The end.




39 comments:

  1. Praying, praying, praying so hard for you! I am in awe of what you are doing here, with Gavin's passing so fresh in your mind. You are one strong mama! May God heap blessings in abundance on you, Ed, Brian and the new baby.

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  2. Sending calming vibes and positive energy your way! Praying for you, your family and baby hope <3

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  3. The stress you are under would cause anyone to have a nervous breakdown. You are just stressed and feeling it physically. Do try to take care of yourself and RELAX! BREATHE! Go for a massage, take a nice hot bath, drink some tea, have some friends over and watch crap TV! Take it easy! You are just under a lot of pressure. I know your Hope is just fine!!!!!! But you gotta take care of yourself!!!! It is so hard but just for now try to put yourself first, at least til you get out of the woods!

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  4. Praying! And...thank you for what you are doing for those remarkable kids.

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  5. Thoughts prayers and love for you, your husband, your two angels, Brian, and Hope.

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  6. Sending you every single last positive vibe I have left today! I'll send more tomorrow once I replenish!

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  7. Sending you relaxing vibes and special glue to keep baby hope stuck firmly in there :) I hope that all is well when you have your scan tomorrow x

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  8. Kate, you are simply amazing. For a woman who is grieving for her first born, you still take the time to think about others and be completely selfless. Even with all the stress you are feeling you are still "doing" for Gavin which in turn will hopefully help hundreds if not thousands of other children with disabilities. I pray for you and your family every day and am sending positive, relaxing, loving vibes your way. Extra special prayers for the little one growing inside of you. xoxoxo

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  9. Prayers are coming your way my dear!!

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  10. Sending you all of the positive energy in the world. I continue to hope with you.

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  11. Praying for you!!! May God's peace be with you!!!

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  12. Done, and will be done over and over again. Waiting to hear good news.

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  13. Praying prayers for strength, peace, and rest for your soul. Will be praying for all aches and pains (of all kinds) to subside.

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  14. You are amazing!! Keep up the great work. Many many prayers for you.

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  15. sending positive vibes to you..i know tmrw morning they will find a strong pounding little heartbeat in there..anything other would just be cruel at this point! i am a nurse n mommy of 2..lower back pain is normal as long as its not crippling n the stomach pain could very likely be trapped gas which happens a whole lot in the first trimester. love n hugs n hope <3

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  16. Continuing to pray for you, Brian, Daddy, and HOPE! I think this project is wonderful and absolutely perfect. Reaching beyond Gavin's school would take you away from your life, where you are needed most right now. Bless you! And this labor and delivery nurse is praying all the time for sweet Hope!

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  17. Continuing to pray for you, Brian, Daddy, and HOPE! I think this project is wonderful and absolutely perfect. Reaching beyond Gavin's school would take you away from your life, where you are needed most right now. Bless you! And this labor and delivery nurse is praying all the time for sweet Hope!

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  18. Praying for you!

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  19. Love you, sweet mama. PRAYING BIG TIME.

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  20. Amazing Project. As my daughter has had Early Intervention I know first hand how frustrating it can be to get equipements for her. Theapists and Teachers in the EIP will be so grateful.
    You are doing a great job!

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  21. Psalm 71:14 - As for me, I will always have hope;
    I will praise you more and more.

    Praying for the best. . . .

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  22. So happy to see your project blowing up! And you're totally right - no need to go global. Make your difference how and where you can. First and foremost you must take care of yourself so you can be there for your family.

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  23. Keeping my fingers crossed for you!

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  24. Your anxiety has to be immeasurable. I want to share this with you in case it helps. In case it helps you wrestle your anxiety into something more manageable. I don’t know what your religious affiliation is, if any, and I mean no offense with my comments.

    I travel a lot for work. I get on and off airplanes all of the time. Every time I look around and see the people on the plane. Families, tourists, tired business people like me, and there are always some children. I am Catholic, and a mother, so I always say a Hail Mary. I always pray for the safe return of everyone on the plane, including myself. One time while I was sitting on a plane praying this prayer that I know by rote, a thought came to mind. Really more of a visual, a vision if you will. I saw Mary with this huge set of wings, ridiculously large wings. Wings so large that they could come down and embrace entire airplane, really the whole world if they needed to. It made me feel so safe. I am not a mystical person. I am more of no-nonsense, stop the BS, call-it-like-I see it kind of person. Visions -- not my thing. But this happened and I draw on that visual every time I pray on the plane. I have to reach for it sometimes, but I always pull it into my mind.

    I prayed the Hail Mary for you tonight. I envisioned those wings coming down and embracing you and making you feel safe. Making you feel peaceful. I am hoping, praying and believing for you. Just in case you can’t do it for yourself tonight. Hang in there Momma. Love coming your way. Peace be with you.
    (sorry for the wicked long post)

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  25. Dear Kate - I read with awe of Gavin's legacy… but then I came to "In other news - I need you." I stopped right there and prayed fervently before reading any further, and will continue to do so. God bless you and Ed and Brian.

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  26. Love you all so very much. You are incredible and you are human and you are honest enough to remind us of this throughout your updates. And that just makes you all that more incredible.

    You are always in my prayers. You all are. Always and forever.

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  27. I am sending positive thoughts and prayers your way! You are an extrodinary woman who deserves more children. I am so proud of what you are doing to help other with disablities through your trust project. I will continue to support this fund with little amounts here and there. Can't wait to read the article written about you!

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  28. Sending many positive vibes from London.

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  29. Sending positive vibes, hugs, prayers and love from Italy

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  30. Sticky vibes for that previous babe xxxx

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  31. The trust is an incredible idea and will help lots of kids God bless you for what you're doing in Gavin's name.

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  32. I really hope everything is just fine.I really really hope for it :)

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  33. I think Gavin must be so proud of you. I know I am... using your grief to do something incredibly wonderful for other children and those teachers and parents who need tools to help "needy" children. I am in complete awe of you. You are a hero, to your children and to me. Thank you for inspiring me to be a better mom, to be a better person. I often think I have so much love inside of me that I could burst, but I don't know what to do with it. You have given me wonderful ideas of ways I can reach out to my community (and yours) to help, and to teach my daughter to give and love to others as well.

    I'm praying your appointment today goes well. I'm sending all the love and hope and good will I can muster to your family today.

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  34. Sending you prayers for tomorrow and always. Also sending lots of rays of love to your entire family.

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  35. Just read this post now and am praying for you and the baby.
    I was happy to read of the great response to your Gavin's Trust post. So wonderful and thank you
    for the blessing of being able to be a part of it.

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  36. Having an administrator/go between is a fabulous idea! That way they could sift through and forward only positive comments and deal with inappropriate ones with a modified form letter unless they're anonymous, in which case you never needed to respond anyway. God bless you and your family as you face this grief in your own ways. I feel confident there is someone you know who would love to take this on. Prayers!

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  37. Kate~you are the strongest, most amazing woman that I know. Not that I know you personally, but you and Gavin have totally changed the way I think and feel about life everyday.

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