As many of you know, I am a data fiend. I do everything I can to seek out knowledge and facts to support my own opinions. Kelly, above all, knows how much I like being right!
I applied this same tactic immediately after I heard the doctors say they thought Taylor has Down Syndrome. I had not yet even held Taylor before I was on my phone trying to find anything I could about Down Syndrome, trying to understand how those few words will change our lives forever.
That search and learning process continues, and will keep going my entire life. Throughout this process I have come across everything from medical documents, both modern and severely outdated, to personal accounts of family members or individuals with Down Syndrome, both very positive and very dark. I read, listen to, watch and question everything I can.
One of the things I have noticed, mainly on personal accounts such as blogs or comment sections of articles, is the accusations of some people towards the people that are writing blogs, that they are only talking about the positives of their lives. Somehow selling out, or being in denial, by not mentioning the struggles that can come with raising someone/living with Down Syndrome. I do feel that many people only want to report on the most positive aspects of their life. Would you want your darkest parts of your life made public for all to see? However, I also believe that it is our job as parents of children with disabilities to help educate others about what we are going through and be advocates for our children.
I know Kelly and I are very upbeat on this blog and we will continue to be. This is not because we are part of a large conspiracy to convince the world that having a child with Down Syndrome is the easiest thing we have ever done and that there will never be any struggles or difficult times we will face. We will be upbeat and positive because that is how we are raising our child. We will share our struggles with our family and friends, and a lot of them will be aired here.
One of the other things I have noticed when reading about or interacting with the families of those with disabilities is that a lot of them always seem ready for a fight. They have a tenacity, a fire, that you can recognize immediately as not anger, but as an intensity that cannot be ignored. I think a lot of people see this as being uptight, or over stressed, which can make them feel uncomfortable around them. I think it is something else entirely. I think it is the choice to fight for things that were previously thought to be basic rights for our children. I think it is a readiness to go toe to toe to ensure that our children get the best shot at life they can.
If you tie this intensity with the fact that many people only hear the positives from the families they know with children that have disabilities, a lot of people wonder why we need to fight.
There has been a story in the news the last several weeks about a family in Oregon that has a little girl, a few years old, that has Down Syndrome. They were just awarded over 2 million dollars after they sued for a "Wrongful Birth" because the doctors that did prenatal testing made a mistake on the test and missed the fact that she had Down Syndrome. This case has sparked a wild fire in our community, with people on both sides of the argument. I have been following it through a group I am part of consisting of parents of children with Down Syndrome, so everything has been respectful of the children, even when they are not on the same side of the argument.
This morning, however, I followed a link out to a newspaper that was covering this story. I had to stop reading the comments after only a few minutes. As hurt, disgusted, angered, and sick I feel at some of the comments that people left it only reminded me of why we need to continue to fight.
I thank God that our family and friends are as understanding and supportive as they are.
I also ask God for the strength, patience and wisdom to fight those that are not.
- Brian
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