Tuesday, 01 September 2009

• More on Down Syndrome and Myths

   by Mama Pig 

  I had to think about this for a few days. The feature on momaroo the other day about keeping or aborting a child that you knew would have a disability obviously hit close to home for me. I commented quite a few times, but after some careful consideration; I decided to blog a semi response. While this is not exactly a rebuttal, I am going to touch on a few things from that post.

  First, I am unsure if anyone else noticed, but the writer was a sixteen year old girl. No, this does not invalidate any of her opinions, but I think that it should at least be noted that the person posing such questions was still a child herself. I would dare say that at that age I am sure many of us thought very differently than we do now. I also have to ask myself why a teen was featured on the front page of Momaroo, but that is an entirely different blog.

  I am not here to change anyone's mind about terminating a pregnancy. I have had a long standing belief that if you stay out of my uterus I will stay out of yours. What I want to explain is; disabilities do not equal horrific lives. Emily does not do things as quickly as her peers. She didn't walk until she was two. She still does not have the clear vocabulary that a two year old has. She will most likely potty train a bit later than my other children. However, that is  not what I choose to dwell on when it comes to her development. You see, it isn't important to me that Emily didn't walk until she was two. What mattered to us was she DID walk. It matters not that she doesn't speak in full sentences yet. What matters is that she DOES speak. It matters not that potty training might not start until she is at least three. She WILL be trained and not live her life in diapers.

  The first year of her life was filled with doctors visits, hospitalizations, and surgeries. We have had a year and a half now with only the well checks and occasional sick visits to the doctor. There have been no more surgeries and no more hospital visits. Yes, her medical bills reached almost a million in the first eight months of her life. Of that, you would faint if you knew just how little we were responsible for. It is called insurance and it is amazing. Yes, I realize we were very lucky to have the insurance that we have, but there are other options if you just seek them out.  Now, for those that will say to me; "we don't have health insurance and can't afford to pay that in medical bills;" I have this to say; children with disabilities will often qualify for medical assistance regardless of the parents income. They are called medical waivers and they are granted to many people with differing disabilities. I realize the backlash that some will offer; "why should I pay for someone else's child ?"; to which I reply; you don't. We all work and we all pay taxes which fund the medicaid program. This was why this program was put into place; to help those that were facing major medical expenses that they were unable to handle. I don't know about you, but I would much rather my tax dollars be used for those that are working and doing everything possible for their families than those that are working the system and sitting at home just waiting for that check to come in the mail.

  Next argument; "I can't handle people laughing at my child." I hate to break it to you, but people are cruel. Emily is my only child with a disability, but I have had to lend my shoulder to all of my children at one time or another in their lives when their friends have been mean or rude. If you don't wish to have to deal with cruelty; don't have children period.

  A day in our lives is really no different than a day in anyone's life. We get up in the morning. Emily watches a little Noggin waiting for her brothers and sisters to get up. We make breakfast. She eats in her perfectly normal high chair often feeding the dog while she eats. Bella waits under her high chair for whatever Em decides to toss down her way. After cleaning up breakfast, I will often sit down and read Emily a book. She loves books. As a matter of fact; out of all my children she is the one that seems to love books as much as I do. Once the rest of the children are awake, it is time to play. Emily will chase Caleb through the house. Liz will play peek a boo with her for a bit. Jake turns on his music and they dance in the kitchen. Whitney sits her in front of her mirror and tells her how beautiful she is and how to properly apply makeup. Alyssa loves reading to her.  Josh even likes playing catch with her.

  We eat lunch, we play outside in the pool. We even have been known to head out to the beach for the afternoon. All the kids love the beach and just like every other two year old; Em loves the sand. Do people look at us strangely? You bet. Wouldn't you look at someone strangely that was at the beach alone with all seven of her children? It has nothing to do with Emily; they are looking at me like I have to be the craziest woman in the world to try and undertake seven kids at the beach all by myself.

  In the two and a half years Emily has been on this earth I have witnessed two occasions where I received what I considered rude looks. The first was at the mall when she was just a few months old. I think it had more to do with the fact that even at four months old she was the size of a newborn than it did her Down syndrome. I like to think that they were just thinking I had a newborn at the mall. The most recent was at the doctor's office when we took Whitney in for a check up. Emily had never been around a child smaller than herself and wanted to go talk to this little girl. The mother seemed uncomfortable about her coming near and I quickly took Emily out of the situation. Again, I would like to think the woman was more concerned about germs than Down syndrome, but I can't really say. I refuse to allow small minded people to ruin my day.

  Now, as to the fact that Emily's life is somehow less enjoyable than those without disabilities; yeah right. If you had ever spent time with our family you would know that her life is full of laughter and joy. She has seven brothers and sisters that make it their lives work to make this girl laugh. Out of all the kids; she is the one that ALWAYS wakes up with a smile on her face. That is not to say that she doesn't get upset or have bad moments. We all have bad days and Emily is not immune, but overall she is the happiest child you will ever meet. Do not ever tell her that her life has less meaning than someone else, she might kick you.

  Finally, I will never try and tell you that this life is for everyone; it isn't. Some people just can't see the forest for the trees and have heard too much false information to ever make the choice to raise a child like mine. What I can tell you is; this life is for me. I am not selfish for giving my daughter life. My "normal" children do not feel trapped with the knowledge that someday they might have to take on the care of their sister. My daughter does not have a life not worth living. She is beautiful and the biggest charmer you will ever meet. I have never met anyone that has spent more than five minutes with her that didn't fall madly in love.

  I am the mother of a child with a disability and I thank God that He felt me special enough to receive this gift.

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