A Good and Perfect Gift

I finished a book today called, A Good and Perfect Gift, and I have to say, I liked it. I wasn't sure if I would as I started reading it but the ending did it for me. Many blogs I follow suggested it, so I thought I'd give it a whirl. Plus, I wanted to finish it before I begin the Book Club book, the Upside of Down.

What I found really hard to relate to about the beginning of the book and through our short lived journey thus far, is the religious affilation to our daughter's chromosomal makeup. At first, the author talked about her being very religious, going to seminary and how she thought this was a punishment. We don't even go to church. Not that I don't believe in God. I certainly do. I just don't believe in the institution of church as a necessity to have a relationship with the big guy upstairs. Often times you hear from many people as she also referenced in the book about her experiences, "you were meant to have this baby because God only gives these babies to special people" or "God is trying to teach you something" "You are more blessed because you have her" "You are chosen". Well, I have done what "they" say you should never do and asked the "Why us" so many times. I just wanted to understand why we were chosen to be her parents. Why we have to explain to our daughter that the world can be an ugly place with mean people that think she shouldn't exist because she isn't deemed "perfect." Why do I have to be a worry wart even more than I already am. I have anxiety - didn't "He" know that? I can't keep my cool in difficult situations. Nonetheless, this writer had the same struggles. She questioned her faith as well as the why's on the world. Once she admitted this reasoning, I kept reading.

I know the intent isn't negative when people say these things to us about God. I mean they are right in some degree. But God gives baby's like my daughter to many people, yet they choose not to bring them into the world. I am not judging those people because I believe everyone should have the right to choose their own path in life. I have chosen mine and I am who I am from my decisions. But I do feel that often times, these people have NO idea of their choices and aren't informed of ANY of the positives. You are given a list of the "I'm a Dr. so I have to tell you EVERYTHING that could ever be wrong with your child, to cover my own tail in the future." Do they give this list to all parents of typical kids? Do they say, your child could one day go to Chuck-E-cheese and need a kidney transplant 2 years later? Or be scarred for life on 90% of her body because of a highly deadly infection she contracted? No. They don't. But you add in an extra chromosome and you are suddenly labeled a special parent that gets the uber-let me-scare-the-crap-out-of-you list.

Let me clarify. I didn't bring Leighton into the world because of God. I brought her into the world because she is my child. I wanted her. I loved her the second the stick turned blue. She was planned and conceived out of love for my husband and wanting to begin a family. Nothing to do with not wanting to make a perfect person. We knew she had Ds at 12 weeks. (Which is coming up on a year next month. Wow. Time flies when you are having fun.) We were told we had "options" yet we chose to continue our pregnancy because she was our child. Chromosome or not. I was scared about kids BEFORE I got pregnant. Now you add in their lists of could be's; thanks Doc. You are supposed to provide me with answers, not more questions.

Now I have found another reason I could relate to this book. While it was slow to gain my attention because we come from very different worlds, she a scholar and focused on intelligence; me just getting by in college on the 7 year plan with a D for degree; I found that she too has issues with the medical community. The more parents and families I meet, the more you see it. There are so many uninformed doctors, therapists and nurses. If I hear one more therapist say the word Downs or call her a Downs baby, I might scream in their face IT'S DOWN! NO S, Jerk! BTW, SHE'S A BABY, BUTTFACE!! Learn who your audience is! (I know, name calling is what I am preaching about but tit for tat.) If I were to bash their profession with improper terminology that offended them, I am sure they might have a few words of choice for me. Then there are the doctors. WoW. Back to my yelling and name calling again. How can we expect these clueless people to educate new mothers on the full potential a child can have with Ds when they aren't fully up to speed themselves? A friend of mine had a pediatrician ask her if her son could throw a ball. Really? Is that all the potential you are going for?

When we met with a geneticist right after Leighton was born, she made a comment in reference to herself. She was trying to change the ink in her printer and said, "This will show you how mentally retarded I am when it comes to technology." I wasn't sure how to respond to that. Do you laugh at her because she's making fun of herself and lack of skillset? Or do you tell her how you really feel? Do you leave the office when she is known to be a huge Ds advocate in the area and very versed in the diagnosis? Is that our best shot at knowledge for this area? I wasn't sure what to do. She lost some credibility in my book. She still has great knowledge of her field as it relates to chromosomes, but she was very clinical in nature and had little regard for that term and what it meant to our family or child. Scary.

I hate even typing the "r" word. I hate it! I hate when people say it in any context. Whether they are referencing their own shortcoming's or their joking about someone being silly. I hate that my daughter will be classified as this from many ignorant people in the medical community. I hate that it's still used in many instances to diagnose disabilty of any sort.

I read an article a friend sent me today in regards to Iowa trying to stamp out the R word in all of their governmental literature. While it will take some time, they are trying. Many of the comments were very negative. Saying that the policticians need to focus on poverty, lack of education and drug issues. Then on to say that "they need to face that this is what their children are based on a diagnosis." Those people are that have caused a negative connotation to the word. They have no idea how it really feels because they haven't been affected by this hurtful term. As I have admited before, I used the R word on many occasions in my past life. I referenced myself and others in this context. But then your life changes in an instant and suddenly things that didn't seem hurtful before, now stick a knife in your heart. Just the thought of that label being near my child makes me want to cover her eyes and ears then put her in a bubble.

I get why so many adults have sheltered their children from the world. It's a horrible place sometimes. But I will show that nasty world that my little girl deserves to be respected and honored. She makes this world a better place with just one smile. In this post I will not post a picture because I don't want her face associated with a search on that word. But I will say, come back Wednesday and I will make up for it with Wordless Wednesday and some of our fun photos from our shoot on Sunday.

There were so many other great parts of this book so I will make references from time to time as these instances are shared in my life. Please check it out if you get a chance. It's by Amy Julia Becker. 

Yup, I have become one of those moms. The one's that get on a soapbox and don't stop. Because I am here to tell ya people, I ain't stoppin here! You will hear me; see me and read my words as long as this country allows that freedom. I will advocate and be the voice my daughter needs until she has her own to share if she chooses. And even then, I will be there. Watching out for her and the rest of my new community that has welcomed me with open arms. I am a Mom. Hear me ROAR!

Maybe this is the reason she was given to us, to shut me up or give me something worth talking about. Who knows?! Either way, I wouldn't change one single thing about her. Chromosome; hair (or lack of); cell - anything. She's PERFECT just the way she is. 

Until next time..


  1. Excellent post! I read the book too. I am not a fan of books that are overly religious so some parts were tough for me to get through. But overall it was a good book worth reading.
    And I agree with you on the Doctor thing. They are the worst at giving out misinformation when it comes to Ds. I will never forget Russell's Doctor telling me there were only two types of Down syndrome...One for older Moms and one for younger?????? WTH? That doesn't even make sense!! lol


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