Sunday, April 21, 2013

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.

Wednesday, April 17, 2013

Three Years and a Million Miles

April 17th is a special day in our little family of three. Joe proposed to me on April 17, 2000, and after I called him a liar for tricking me, I said yes to marrying him.

And 10 years later, after a brief cancer scare for me and years of infertility, it was the day of our precious baby boy's first smile on his 5 week birthday. Matthew and I were in New Jersey with my in-laws to see Joe's grandmother who was very ill and had major surgery the day before. She was afraid that she would pass away and never see Matthew so we went to surprise her.

That same day our lives were forever changed when Matthew had the first of many seizures in just a few hours. The day we were thrown head first into the unknown. 

Matthew went through numerous CT scans, MRIs, blood tests, genetic testing, video EEGs,and 3 spinal taps in a week. They sat us down at a conference table in a tiny room and told us that Matthew's brain was shutting down for seconds at a time and when his brain was functioning it wasn't synchronized and working together. They gave us a grim prognosis of Ohtahara syndrome and released us after a week of being there. 

We were told a lot of different things by a lot of specialists that never proved to be true. Matthew doesn't have Ohtahara, his brain isn't shutting down and it did finally start working together. We were told that he would need a feeding tube, so we worked to find him excellent occupational and speech therapists to help us with feeding issues. His favorite foods are now chicken nuggets and macaroni and cheese, just like any other kid his age. He does occupation and physical therapy at school and at an outside rehab center. He works with a vision teacher to improve his tracking skills and with a teacher of the deaf and hard of hearing. He rolls all over our house, he dances in his gait trainer and he flirts shamelessly with every woman he meets. He loves Cars (especially Mater), Mickey Mouse Clubhouse, cars and trucks, and music. He has exceeded all we were told his life would be and continues to work hard every day.
He is our miracle.