Legacy of a Super Hero

It has been a week since our special needs community lost a true super hero. He was strong, courageous, and he left this world helping others. Super Gavin was just 5 1/2 years old.

 

 

Image Courtesy: Chasing Rainbows

 

 

I first learned about Gavin Leong through his mom Kate's blog Chasing Rainbows when I started blogging back in July.  I was just learning the ropes and started finding other moms online who I could learn how all this blog stuff works. Right away, I was hooked on Kate's blog. Our families had a lot in common--we both had been through years of infertility, both had undiagnosed non-verbal boys, and we do whatever it takes to make their lives better and to help them move forward in the world. 

 

Gavin gave me hope for Matthew's future progress. Kate and her husband Ed were told to take baby Gavin home and make him happy, clearly not expecting him to make gains. Kate sought out alternative therapies and fought to get what Gavin needed. In December, he took his first independent steps and completed the therapy goal of walking 5k, or 3.1 miles, in school. A few days before his last illness, Gavin began using a Big Mac button in school to request water. He was only beginning to tap into his potential and I will always miss seeing what he would have become. Gavin was a shining example that miracles can happen.

 

In his final days, Gavin touched the hearts and influenced the actions of thousands and thousands of people who he never knew. Kate's Facebook page grew from a few hundred fans to over 16,000 fans at the time I am writing this. As a group we held vigil with Kate and Ed, praying for the miracle we were all so desperately wanting for Gavin. And we cried and prayed together for strength for Kate, Ed and Gavin's younger brother Brian when it was clear that the miracle wasn't coming and Gavin was slipping away. I have never seen such an outpouring of love, prayers and support on Facebook before. It is truly amazing how so many people can come together to love and support a family that they don't even know.

 

Because of Gavin, children around the world got hugged tighter and longer, their parents knowing that life is fragile and that at any time any one of us could be in his parents' position.

 

Because of Gavin, people are learning more about organ donation. Kate and Ed selflessly donated Gavin's organs in hopes that others could be healed and that part of Gavin would live on. Thanks to Gavin, a 40 year old man who was in need of a kidney transplant will be getting more time with his family, more holidays, more birthdays.

 

In lieu of flowers, Kate and Ed set up a wish list of charities close to their family's heart that they wanted people to donate to in Gavin's honor-- the Nemours Child Life Department, Gift of Life Family House, and Caring Bridge.

 

 

Fly high, Super Gavin. Thank you for touching so many hearts and lives and for bringing out the goodness in so many people.

 

 

 



The Generosity of Strangers

A few weeks ago, there was a message in a special needs Facebook forum that I'm a member of where a friend was giving away a Tumbleform II chair with a wheeled base that her kids had outgrown to anyone who wanted it. I jumped on it with zero hesitation. For our family it was an answer to a prayer, more mobility for Matt outside of the wheelchair and that it wouldn't have to go through insurance to get it. Any parent with a child who has special needs knows how expensive medical equipment is and how insurance companies will go out of their way not to cover it.

Upon learning a little more about this chair, I found out that we are the third family to use it and that it has been well-loved. The first family who used it has a son with Cerebral Palsy. When he outgrew it, it was passed it to a family with 9 children, some of whom have special needs and all of them very much loved. I was blessed enough to "meet" their mom, Meredith, in a group for special needs parents and was immediately mesmerized by her family's testimony. She has a blog about her family, their faith, and homeschooling that I love, please stop by and check it out.

We made the hour drive to their home and felt instantly welcomed. I was so excited that I was finally going to meet them in person after chatting on and off for a few months. We didn't get all of the kids together during this visit because both Matt and their kiddos were all in various stages of illness and we didn't want to expose all of them to each others germs, but hopefully we can soon.

Matt loves his new chair, it is far less confining and restrictive than his wheelchair. He has especially loved sitting in it since we put up the Christmas tree because he can get closer and look at the lights.We are so thankful for their generosity and even more when those Facebook friends become friends in real life.

Creating My Village

When I first found out I was pregnant, I was beyond excited. I was elated...I was nauseous... I was scared out of my mind. We had been trying to have a baby for about 4 years, and thanks to Polycystic Ovarian Syndrome (PCOS) we ended up with a negative pregnancy tests month after month. I had honestly thought that after that long we would never get pregnant. I was so scared of doing anything that might jeopardize this little blessing.

Within a day of the positive test, I was seeking out every single piece of pregnancy info I could lay my hands on, first being the Holy Grail of pregnancy books: What to Expect When You're Expecting.  I quizzed my mother, my grandmothers, my mother-in-law, our sisters, and basically anyone who possessed a uterus what their pregnancies were like. Armed with all their wisdom and experience, I felt like there was hope that I might not screw up my kid after all.

Five weeks into baby bliss, everything got turned on it's head and our little man began having seizures while my in-laws, Matt and I were in New Jersey visiting an ill relative.  To say that I was scared out of my mind would be putting it very mildly. Joe flew up as soon as he could to be with us and we spent the following week in a hazy hell of spinal taps, EEGs, and finally getting diagnosed with Epilepsy before we were allowed to bring him home. We had no idea just how much our lives were going to change.

All around me, my friends with babies had typical questions and concerns about their little ones. I had no one to compare our experiences to or ask questions about medications and therapies. As a result of our unexpected detour into Special Needs World and a hearty dose of undiagnosed Post-Partum Depression, I withdrew into myself and a few friends and family members dropped off our grid. I also suspect that more than a few of them were tired of hearing me complain about insurances and therapies. In their place we gained new specialists and therapists. I would see other moms bring their kids in for their appointments and we would smile and make chit chat, but never anything significant. And while we have tons of kids in both of our families, none of them have had issues quite like Matt's, so it was difficult for them to understand what was going on at times. I had never felt so alone in my life.

Shortly before Matt's second birthday we ran into a family we had met when I was pregnant . This time we had Matt with us and they realized that we had something very important in common: our kids had special needs. Their boys were older than Matt, but they had already been through a lot of things we were just now learning about. We bonded very quickly, trading diagnoses back and forth and finding out we had specialists and a physical therapist in common. The more we talked it felt like we felt like we had known them for years. I especially bonded with the boys' mom, Karen. Within ten minutes we had each other's contact information and Facebook information. I am so thankful we met them and that it brought me out of my cocoon.

Soon, I was like a special needs heat-seeking missle. I approached a mom in Target when I saw their kid was in a special stroller and start talking to her. That awkward exchange led to Matt's first play date. We met a family at SeaWorld and asked them about the model of wheelchair their son was using when we knew that wheels were in Matt's future and that led to another Facebook friendship. Karen introduced me to a group of special needs moms that she has been involved with for years and I jumped right in with them too. These are some of the strongest, most amazing people I have ever had the pleasure of knowing. They are amazing advocates for their children's healthcare and educational needs, they support each other when their kids are in the hospital, when an IEP meeting doesn't go the way it should, and even in the grief process when one of the kids get their angel wings. I know when things go wonky, they are always there to listen and send a virtual hug.

I am thankful to have so many people involved in our life that love us and love our kid. They have been with us and cried and prayed with us through scary times and they're the first to celebrate with us in happy times. I am humbled by the time and generosity they have shown us time and time again. They have become our family, our tribe, and we are more thankful for them than they will ever know.