Because the church made a video of our family, I have gotten many wonderful emails from many wonderful people over the last couple of years. I have made many new friends and many of them either have disabilities or are the parents of special needs children. What a huge blessing this has been. The world is full of amazing people, I'm telling you!
About two years ago, I got an email from Julie. She had seen our video and we connected immediately. I went to her blog and never stopped reading. Her darling, sweet boy, Collin (AKA Bubba), was born with an extremely rare condition called TTD. It is degenerative and he has never been able to talk or potty train or even walk on his own. But man, that kid could smile!!!
I can't think of many other times in my life when I have connected so deeply with a person. I fell head over heels for Collin from the first moment we 'met' via blog technology. I mean, it was love at first sight. Really meeting him last fall was a great honor in my life. I also just love Julie. She is just SO positive and ambitious. Where I can't take my kids out in public without MAJOR mishap (I lost Ethan at the fair last night and practically had to carry a defiant Derick), Julie is always out on a wonderful family adventure. Even though Bubba can't be in the sun for very long and has a feeding tube, she does what it takes to have a 'normal' family life and experiences. She is seriously my idol.
Thursday night, her sweet Bubba passed to the other side. We were absolutely devastated. Grace sobbed for over an hour. I cried myself to sleep. My eyes are still swollen. I am just so very, very sad. Collin lived in a broken body for 12 years and yet touched so many lives with his amazingly strong spirit.
It causes me reflect on the value of a life. Many people might say that because Collin wasn't expected to have a long life, his passing was somehow less devastating or sad. Some might say that Julie's burdens are somehow made lighter now. Those people don't understand the value of a life and the defining nature of being the mother of a special needs child. In many ways, it really becomes your identity. When you spend the majority of your life serving your child in a very intimate way, it defines you. Of course, we women have many different hats we wear, but being the mother of a disabled child consumes the majority of our energy. I am so very very sad that with Collin's passing, Julie will be in such a strange place in her life. As she put it one day, every diaper of Collin's that she changed, was an honor and a privilege.
After our video was put on YouTube, I was actually shocked at the number of derogatory comments made not about the church, but about my boys and our choice to add Derick to our family. Words that you thought had faded from the vernacular years ago, popped up in comments referring to my boys. Someone even suggested that we ruined our girls' lives by adding another disabled sibling. There was even the hint that we have two whole children and two half children.
I know you may have a hard time believing it, but there really is an astounding under-current in this country of a disregard for the sanctity of life. 90% of babies with Down Syndrome are aborted. This couple sued because according to tests, they thought they were going to have a 'healthy' child, but had a daughter with DS. While that story is shocking, read the comments. MANY of the people actually agreed with the couple and had such ignorant things to say. One claimed that people with DS live miserable lives and it's a mercy to abort them. Like he would have any idea.
What I know is that children with disabilities can lead wonderful, very happy lives. Even amidst incredible pain. Bubba still smiled through the pain. He felt love and exuded love in a very deep way. His sister was the sweetest, most compassionate sibling I have ever seen. Being Bubba's sister wasn't a burden. It was a choice blessing. It made her the amazing girl that she is. The same is true for my daughters. A person may come to this earth in a broken body and may not live a very long life, but he is still a person with as much worth as any one of us. What we label as success in this society is honestly very twisted. I consider love and happiness to be the hallmark of success, and Collin brought that to the world in spades. I can't think of a more successful life than his. He taught so many people so many wonderful things and touched so many of us with his sweet, darling spirit.
I am so heart-broken that he has returned to his Father in Heaven. Even with my faith, the pain is so deep. His loss is felt so keenly by those of us who were touch by his life. A life full of value. A little boy who never walked on his own, never talked and wore diapers, fulfilled his mission in life and succeeded at it in a much bigger way than many unhappy souls wandering around on this planet carrying the label of 'successful'.
I was very blessed to know Bubba and his wonderful family. I am very blessed to have my own two "Bubbas"; that even though some days I want to scream and shake my fist at the sky, I know what great lessons they are teaching me. I think all of us 'whole' people could learn many lessons from those in 'broken' bodies. I think that is one of the reasons God sends them here. I wish everyone could understand that and know the wonderful gift that was Collin Presley.