Once again, I find myself thinking it has been too long since I have made the time to post here. SO... to update everyone I'll begin with a few weeks ago.
I was given the wonderful opportunity to go and speak with a small group of 1st year med students at Case Western Reserve University in Cleveland. Case is one of the top medical schools in the entire country and there are so many bright minds in one building it is almost overwhelming.
I arrived at the school and was escorted to a small room with 6 med students and 2 faculty advisers. I was told to tell my story and my experience with Casey and Connor and Down syndrome. Well, talking about my boys is my very favorite pastime. The students asked some great questions about our lives and I did my best to give an accurate portrayal of the wonder of my life with C&C.
One question that was asked was if there were an available pharmaceutical that I could give the boys to essentially cure them would I give it? I answered honestly and said no. I explained that to give a pill to my sons to make them "normal" would be like telling them that they are not good enough and nothing could be further from the truth. Casey and Connor are the perfect ones and the rest of us are flawed.
I was able to explain to these future MD's the power they have when the don the white coat. I told them that they have the power to give hope and they have the power to take it away. I explained that their attitude about Down syndrome will directly effect the way that a parent just hearing the diagnosis reacts to it. I told them never to apologize, there is nothing to be sorry about. Down syndrome is no longer a shameful, awful, unimaginable horror. There are very bright possibilities for our kids.
I also let them know about the 90% abortion rate when a baby is diagnosed prenatally. I told them that with the advent of this new blood test to diagnose earlier I fear the complete eradication of people with Down syndrome. I told them that it makes me feel like science does not consider my children as worthy of life as a child who is considered 'perfect'. I posed this question- if you are able to successfully diagnose and abort all babies with Down syndrome what comes next? You become able to diagnose Autism prenatally and then get rid of those kids? Then what- find a cancer gene and abort all babies who have the cancer gene because they MIGHT get sick? I told them there are many things that medicine is not able to diagnose prenatally that are INFINITELY worse than DS. I told them that Down syndrome is not a death sentence. I also asked them what happens when you get rid of any baby that has or might have a disability or health problem, who then becomes the weakest link? I asked them at what point we quit killing people in the search for perfection. I hope I gave them a lot to think about.
I ended our session with this,"Before you feel sorry for the parents of a child with DS think about this- how many serial killers or crappy politicians have Down syndrome? Feel sorry for the parents of typical kids." It's a tongue in cheek kind of a thing but really, I meant it as a way to say no future is certain regardless of a diagnosis.
All in all, it was an incredible experience and I hope to be invited to return next year. I would love to continue spreading the message that DS is a blessing NOT a curse.
In other news:
Casey and Connor got their Sure Step orthotics. These are small, plastic braces that wrap around their feet and rise to just above the ankle. They provide stability by preventing the boys from turning their ankles. We hope these will help them to finally learn to walk.
More exciting news to share! Casey and Connor are on a billboard for the Summit DD board. They have been participating in Early Intervention since they were about a month old. I am so excited to see my Miracle Men larger than life!
Finally, on October 16th, I will be speaking to our congregation about my journey with the boys and how it has affected my faith. I am excited for this opportunity but I am also feeling really nervous. I am supposed to speak for 10-15 minutes and I am going to begin working on what I will say this week after I complete this years Down syndrome awareness video which will be posted here and on Facebook tomorrow.
Well, that is all I have time for now. Thank you to all who take the time to read this blog and share what I write. I hope that the stories and thoughts I share with you here help to change the perceptions that you have about DS. My life is so much better because of who my sons are!
Thanks again and many blessings.