Sunday, November 29, 2009
Evan--Goodbye Tiny Warrior
Our weekend was filled with roller coaster of emotions as Friday another another miracle child with Noonan syndrome lost his battle. God brought Becca's friend Evan home. Those who follow my blog, know my daughter Becca and the fact that she has a severe form of Noonan Syndrome. I had another reminder of the gift of today with my daughter with tears in my eyes.
The news hit hard as I had been reminiscing the day before that it was twenty years ago this Thanksgiving Day, we first brought Becca home to make some memories as they didn't expect her to survive much longer. Her brothers and sisters had not had any time with their sister as they were not allowed in the NICU. The doctors had ruled Becca out for a heart transplant and there was nothing more that they could do for her. Her immune system to impaired to have any hope of survival. By four months old, I had watched my daughter die twice to be miraculously brought back to life for more time. I now have spent now twenty years, grateful for another day.
We met Evan and his dad through the Noonan Syndrome support group and Scott was a father who turned writer like myself. Parents who write to cope with the emotions of living with a child with a critically ill child. Both inspired by the strength of our children. Scott also a gifted carpenter, who turned old used blemished wood into stools, chairs and wooden "gifts" for special children out of love.
Tonight I found this video of Evan and Scott, I knew I needed to share their inspiration.
Evan came as a gift from God as a tiny warrior whose came to serve, teach and inspire those who had the privilege to meet him and his father.
In the video they show the gifts of love that Scott so lovingly fashioned from old wood for children. Becca received a "gift" from Scott and Evan about five years ago. She uses it everyday to get things out of her reach. Becca had been asking me for something to stand on because she couldn't reach anything, normal step stools were too short. Then out of the blue, I received an email from Scott saying he had a "something" for Miss Becca.
The beautiful handcrafted stool was perfect and a perfect match to the wood in my kitchen. The little stool became her step into independence. Many times a day, Becca is made independent as she gets things down because of the little stool. The little stool toted from place to place.
Now the stool will serve a precious reminder that she can reach for her dreams with a little help from her friend of the heart Evan. For me a symbolic reminder of the beauty of our children, and the strength of a father's love. A precious reminder of the gift of today with Becca. She has already had more tomorrows than we could ever have imagined.
Thank you Scott for sharing Evan with us through your writing and gifts of love. Our prayers are with you and your family.