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| Christian & Chris Ulmer |
My family was honored with a special opportunity this past weekend. We got to meet Christopher Ulmer with
Special Books by Special Kids and be interviewed by him! Christian did a great job being interviewed and Chris really captured Christian's joyful spirit and laughter! (You can watch that interview
here.) The video got over a million views in less than two days, which is awesome! But lots of exposure also always seems to bring out those who are
jerks not so supportive. *sigh*
It always depends on the situation how I respond to these things. Sometimes I just don't at all, for the sake of our safety or if something just seems really off. However, when appropriate, I have decided that I won't sit by and stay silent. Maybe it's the lawyer in me, but I don't feel like change will ever happen if no one speaks up. It's bigger than Christian. Christian isn't the only person who has been targeted and run down based on their disability. He wasn't the first and he won't be the last. But in the meantime, I want to do what I can to address this issue.
The issue is the belief that people with disabilities are inherently miserable because of their disability.
The issue is the belief people with disabilities are better off dead.
The issue is the thought that people with disabilities are worthless and add nothing of value to society.
The issue is the idea that permeates to the core of our society that people with disabilities are less than other human beings because they have a disability, that they are somehow a substandard class of people who don't deserve the same basic human rights as others.
I want to put it to rest now. All of these things are
WRONG!
To the Melodies of the world: You are wrong. You are as wrong as wrong can get. You are wrong about Christian and you are wrong about the value that he possesses. I feel sorry for you that you miss out on such an incredible person as him. Your words have no power over Christian or over who he is. You can continue to talk and it will change not a single thing. You will still be an adult talking down about a five year old disabled child and he will still be a five year old who has changed the world. So, let's start with the original comment, exactly what was said. Someone shared the video I referenced above and shared this with it:
"Why would you want a monster for a child. How embarrassing to walk
down the street. How selfish of the parents to allow that kid to walk
around frightening everyone in his path just because they don't want
other people to think they're bad parents."
I wanted to address this the way I know how, piece by piece, as any good lawyer would do.
Why would I want a monster for a child?
Besides the fact that I'll add the question mark she forgot, because proper grammar, I suppose the important word in this sentence is "monster." So, what exactly is a monster? Her obvious definition of a monster is a five-year-old child with a disability. So scary!! I'm terrified already.
But, let me explain a little about my definition of a monster. A monster isn't the thing hiding under my bed, like I thought when I was six. Monsters are around us, cunningly disguised as humans. Except these humans laugh at the idea of causing pain. They take joy in creating hurt. They revel in looking down on their fellow man, because it somehow makes them feel elevated.
I'll never understand this type of person/monster, but I know they exist. I've witnessed them first hand.
So, who here is a monster? I think it would be hard for anyone to argue that a joyful, happy, music loving, joke telling little boy is.
I'll address the next two things together. How embarrassing and how selfish. I'll put this one to rest quickly. How embarrassing? Not at all. Zero. There is exactly zero embarrassment felt when out in public with Christian. And how selfish? Also zero. I would like to invite Melody to spend a day with me and Christian, and see how selfish I get to be. I barely get time to shower for myself. Being the mom of a special child requires a selflessness that I didn't even know I had in me. I don't wake up every day and want to give of myself so much that it leaves me with very little, but I don't get to make that choice. I'm not special in that respect. It's what any decent mother does. She gives her children what they need. Mine so happens to need more than most, so that is what he gets. It's fairly simple and straightforward.
Next concern, frightening other people. Again, here we are dealing with an adult who's idea of scary is a five year old with a disability. I'm not sure what type of life she's lived to think this is scary, but I've seen much worse in my 29 years. Frightening is standing next to a hospital bed holding your child's hand, praying they don't die. Frightening is reading comments from people who judge and hate a child based solely on his looks and realizing that your child has to grow up in a world where this type of human being exists. But a child with a disability. I can't say I've ever been scared of that.
Finally, the thought that I do what I do out of shear concern that someone might think I'm a bad parent. Hmm...well, my first thought on this is, someone, somewhere, already thinks I'm a bad parent, so that kind of puts a hole in that theory. I'll never be perfect. I'll never do things exactly like another mom. Some sanctimommy is going to judge me for having Christian's car seat chest clip 1/3 of an inch lower than she thinks it should be. (Yep, that has literally happened.) See, I don't care if people think I'm a bad parent, because people are going to think whatever they choose to think about me regardless of what I do. I can have some influence over that at times, but sometimes I can't. And it's a good thing that it doesn't bother me because I don't do what I do for my kids to get the approval of strangers. I do what I do because I'm their mom and that's my job. This is how love works: when you love someone, you care for them. When you care for people who are small humans, you take care of them by taking care of their needs. When you take care of their needs, you don't pick and choose what you will do and what you won't. You also don't pick and choose when you will take care of their needs and when you won't. If it's a need, you just handle it.
See, real love doesn't have conditions attached, or then it's not really love. It's a reward system where as long as they do what you want or be what you want, then you will gift them with affection or attention. Real love doesn't have that type of nonsense attached. Real love accepts a person as they are, imperfections and all, and provides that affection, attention, and nurturing they need. That's not to say that character flaws are just overlook and ignored. Those things are dealt with and worked through and addressed in love. But real love doesn't have a list of standards someone has to meet before they get that love.
That's the difference between Christian and Melody. At first glance, it would seem that Christian is the more unfortunate of the two, because of the preconceived notions that people have about those with disabilities. But, that's exactly why I write this. I would rather my child be physically blind his whole life and know unconditional love than have him be perfectly-abled and be filled with the amount of hate that some people, like Melody, possess. Let's be honest, it must eat her up on the inside to constantly be so angry and ugly. It takes a really miserable and unhappy person to want to hurt an innocent child. It takes a person who is really hurting to want to cause other people such hurt.
A disability isn't a death sentence. It isn't a recipe for misery. In fact, people all over the world with disabilities are living happily and well loved. Our society has this idea that it is more desirable to be dead than to have a disability. Can I just end that now and say IT'S NOT!!!! Think really hard right now about someone you know who is unhappy with their life. We all know someone like that. Now think, do they have vision or are they blind? I hope the lightbulb just clicked on for many of you. Having vision does not guarantee a happy life. Having a fully abled body does not guarantee a happy life. There are people all over the world who are miserable yet have perfectly abled bodies and minds. So, why do we think the reverse exists, that having a disability guarantees an unhappy life? It doesn't. It doesn't. IT DOESN'T!!!!!!
I can't fathom the type of thinking that goes into comments like Melody's. I can only guess that people capable of this type of thinking have not experienced unconditional love like Christian has. And that's unfortunate. THEY are unfortunate. Because that is a basic need we all feel, the desire to be loved. And maybe sometimes when we don't get that desire fulfilled, we try to fill it the only way we know how, by making other people as miserable and hurt as we are.
So, to wrap this up, Melody seems to think that she knows a whole lot about me, my family, Christian. She made some claims that she knows how much I lay in bed and cry, how hopeless I feel. She caught me huh? I sit in bed and cry at night over how blessed I am to get to be Christian and Chandler's mom. Tears of gratitude do flow from time to time. I also wanted to share a few photos as examples of the hopelessness that I carry and how miserable Christian is. How much he obviously hates me for letting him live, for sharing his life with others, for having a disability.
Her words for me (I won't type it all out because it's really long and rambles some, but I'll cover the parts that stuck out to me. A "..." indicates breaks in the paragraph): Lacey I know you lay in bed and cry. I know you feel as if you have no options I know you feel hopeless. But I'm here to tell you that you are a selfish human being...I do not give a single damn about your son since there are so many other children that need help and that need love but don't get it...Raising a child with this severe of a disability is detrimental to society because it's not right. It's not the way it's suppose to be...I'm not a hateful person.
I won't rebut this particular part because there's just so much nonsense that I white girl can't even. But, please enjoy these pictures of me laying in bed and crying and feeling hopeless.
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| I am so miserable to have a loving family |
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| The misery we experience is all consuming at times. |
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| See the look of hopelessness on my face? Holding up my new book. Ugh! |
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| Hopelessness abounds at my law school graduation where I received my doctorate degree. Laying in bed and crying, I'm telling ya. |
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| That isn't pride on my face, that's hopelessness. |
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| Yep, pure misery. |
Finally, I just want to address one more thing, "Raising a child with this severe of a disability is detrimental to society because it's not right." With such a logical and well articulated argument Melody made here, it's hard for me to think of a rebuttal, but alas, I found one!
Christian is everything that is right in the world. He is innocence and joy and love and happiness and beauty, all wrapped up in a little 39 pound frame. The Melodies of the world are all that is wrong with it. The answer to the wrong is love.
So, even though our first instinct is to lash out at the Melodies of the world, let's take the high road. Let's exhibit the love toward her that God has shown us. It doesn't mean we have to stand by and let her attack us. Obviously, I am addressing that here and dealing with it. But it does mean that I can forgive her and pray for her. Please join me in praying for the Melodies of the world.
Where sin did abound, grace did much more abound. The Melodies of the world are not so far gone that they can't be reached by an all-loving God. Sometimes in our hurt, when we see people dripping poison like she did, we don't want them to be reached, but Jesus died for all of us, even the ones who don't know it yet. He came so that none of us would perish, Melody included. We can't let the hurt that others cause us turn us calloused or hardened. We also can't let the poison that gets tossed about discourage us or make us second guess our purpose. We must keep pushing forward for the good work of the Gospel of Jesus Christ. I must keep moving forward to spread the message that Christian
teaches, so that one day, all people of all abilities will be seen in the same light and treated as equals. God is good, even when people are not. And Melody could keep on spouting hate about Christian until her last breath, but what would it mean for Christian? It certainly won't take away his joy, his intelligence, his love for life, his silly jokes, his purpose. It won't take away the fact that he has changed the world for the better in his short life; that he has brought hundreds of thousands of people together in a community of support; that he gave me the motivation I needed to get my Juris Doctorate; That he can tell a joke and make hundreds of people roar with REAL laughter; That he has been invited to travel the country and appear on national television because people want to know him better; that he is the topic of a book that is projected to reach the New York Times Best Sellers List; That he has encouraged and inspired hundreds of thousands, if not millions of people. That's an impressive list for a five year old.
I am old enough to know not to let one ignorant person ruin my whole day, and I am wise enough to realize the people who deserve love the least need it the most.
So, I am at peace with the fact that Melody's will always be around, but maybe, just maybe, I can reach a few of them. Maybe the love of God can reach a few of them.
