Thursday, 05 November 2009

• Please forgive me...I have my reasons

  Now, if that title didn't grab you, nothing will. I am asking forgiveness because I am going to be discussing a topic that I have covered, oh I don't know, a thousand times already? No, that isn't really possible because I don't think I have reached a thousand blogs, but you get the idea.

  I started this blog just over a year ago for a few reasons. Reason number one; I wanted to be famous. Okay, not really, but I am in a weird mood today. Seriously, I started writing mainly because I wanted to tell Emily's story. Prior to having her, I knew nothing about Down syndrome and I realized that I was probably not the only one. I never wanted, nor do I want now, to be known as "that woman with the kid with Down syndrome", but I have come to realize that those that read me often do not think of me in such a manner.

  In my time here I have had a few people reach out when they were facing the potential diagnosis of Down syndrome. I have tried to give them a realistic version of what life with Emily is all about. I am writing this today because a few days ago I was put in touch with a family that is dealing with this very issue. I won't mention names because that isn't my place, but I will say that the family was unaware of the diagnosis until after the birth. In the interest of giving them some words of encouragement and not forcing them to search my blogs for the ones that have dealt with this; I wanted to give a brief retelling of Emily's story. I am going to try and go about it a bit differently. Not so much from her perspective, but from my feelings when I found out.

  For those that have read this; you can just stop now. I won't be offended. So without further ado; Emily's story...again. (The Cliffs Notes version)

  Em was born three weeks early. After two very intense ultrasound, we were told she was a healthy girl. We never once heard the words Down syndrome come out of any doctors mouth. Four hours after her birth they dropped the "D" bomb. I won't lie, I cried. I cried for the loss of the child I thought I was giving birth to. I cried because I was fearful of how Matt was going to handle it. I cried because I was scared of how her siblings were going to react. I cried because I was terrified of the words "mentally retarded". I cried because I didn't sign up for a child with Down syndrome.

  That lasted for a time and then I refocused and realized that while I hadn't signed up for this, this was what we had been given. It was then that I began to really look at Emily. She was the most beautiful little girl. She was also very, very sick. The next several days were spent making sure that she survived and her extra chromosomes took a back seat.

  I still felt so bad because of my response that first day. How could I, her own mother, not see her for the beautiful girl that she was? How could I expect anyone to see her as Emily, if my first thought was Down syndrome? My very dear friend was the one that convinced me to stop beating myself up. She let me know it was totally normal to have those feelings. I had the right to grieve the loss of the child I thought I was having. It certainly didn't mean I loved Emily any less. I think it is pretty obvious to anyone how much I love that little girl.

  I began to bury myself in research. Emily would spend a month in the NICU and there really isn't anything else to do in that room, so I would hold her while she slept and read. That would prove to be a big mistake. Those books scared the beejeezus out of me. I made it to chapter three of one book and was met with words like; heart defects, seizures, gastrointestinal problems, vision problems, dental issues, hearing problems, thyroid problems, etc. The list seemed endless of all these things that "could" be wrong. If only I could have smuggled some tequila into the NICU.

  Okay, health issues and me scared to death; check.  The reality is; many children have only one or two of these issues and some have none. This was a "worst case" scenario type thing.

  Our next big hurdle was telling her siblings what exactly was going on. I am ashamed to say that it took two weeks before I gave the go ahead to tell the kids. I was terrified of their reactions. If I recall it went something like this;

  Matt: Emily has Down syndrome.

  The kids: And?

  Yeah, I shouldn't have been worried. The kids loved her no matter what.

  These last two and a half years have been the best years of my life. I have watched Emily surpass everyone's goals and prove time and time again that Down syndrome is not the end of the world.

   I did grieve though. I did wonder why life was so unfair. I still remember sitting in the "new baby" waiting room a few weeks after Emily was born. She was in surgery to repair something and that was the closest place for us to wait. I was so angry seeing all these people coming in discussing their perfectly healthy babies. I wondered why I was given this challenge and they weren't.

  Somewhere along the way I realized that I wasn't given a challenge, I was given a gift. Emily is a gift that I will never take for granted and I am thrilled to be her mother.

  Now, for the person that I wrote this for; everything you are feeling is normal. You aren't a bad person for wondering why life is so unfair. You just need to take the time and allow yourself to work things through. Your child is beautiful and you will do right by him. We as parents are working on acceptance, inclusion, and awareness one step at a time. I hope to one day live in a world that looks beyond a few extra chromosomes and instead focuses on the beauty that is my daughter. I like to think I have already made strides in that regard.

  For the rest of you; if you finished this story even though you are already read it many times; thank you. I promise less heavy stuff is coming soon.

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