Tuesday, May 10, 2005

Why having a child with a severe disability has been the greatest blessing of my life

I know that sounds like a really weird topic. But, it is true.

If you look at that title through the eyes of the world, you would see it to be irrational and idiotic. Why on earth would anyone see a child with a disability as a blessing. Children with severe disabilities cost must more to raise than a "normal" child does. Children with severe disabilities can not live "normal" lives. Children with severe disabilities are a burden on the school systems. And my absolutely favorite -- we need to fix children with severe disabilities.

Now, when I look at the title of this article, I see nothing but truth. My daughter has a severe disability known as Rett Syndrome. This is an extremely rare genetic disorder which causes the brain to develop abnormally. This causes severe developmental delays in motor skills and speech. To give you an idea of what I mean:

My daughter is 25 months old. However, at her most recent assessment, she had the fine motor function of a 2-month old; the speech function of a 9-month old; and the gross motor function of an 11-month old. She can not speak, stand, walk, crawl or sit up on her own. She is and always will be completely reliant upon her mother and me for her every need.

Now, after reading all of that, you may be asking yourself how is all of this a blessing. Let me explain.

Children with severe disabilities cost must more to raise than a "normal" child does. This is true. Children with Rett Syndrome require exorbanant amounts of money to raise. There are countless therapies -- physical, occupational, speech, vision, developmental. There are countless doctor/medical visits -- pediatrician, gastroenterologist, neurologist, orthopedist, dietician, etc. There are medications -- reflux medication, vitamin supplements, seizure medication (eventually). All of these things cost money. But, it's only money. And, the federal government, through the Medicaid program, helps the families of children with disabilities with medical coverage. Well, that is great but it costs the taxpayers more money. My response to this has always been: that is what God wants us to do. He wants us to help one another and our tax money enables the government to do just that. So this point is moot. Money is not a factor in raising a child. Only someone without children would see it that way.

Children with severe disabilities can not live "normal" lives. I guess this depends on how you define normal. If you mean going to school, doing the things that most children do...then I guess you are right. But if you mean being a child of God, feeling the emotions that God gave all of us, wanting to love and be loved, and being loved without question by a God who sees us all as His own children, then how is a disabled child not the same. Sure, my daughter will never play on the playground with other children. My daughter will never go to a junior high dance. My daughter will never have a first date. My daughter will never go to her senior prom. My daughter will never get married. My daughter will never have children. So what. Why does it matter? Why do the norms of society matter so much more that the individual value of a person? Why is the value of a person always measured by how much money they earn or what material possessions they have? Do these things have any real bearing on the a person's life. Absolutely not. So, again, this point is moot.

Children with severe disabilities are a burden on the school systems. This could not be farther from the truth. If you want to look at it from a purely monetary point of view, school districts should be begging for children with disabilities. Disabled children bring the districts extra money through federal and state special education funds. Well, it is not fair for a disabled student to take up the time of a teacher who is trying to reach 25 other students. I used to believe this. I used to be a very strong proponent of segregating disabled students from the general population. Then I realized how wrong I am. The teachers are there to teach. Period. It is their job to find a way to teach every child in their classroom. If they do not want to do this, get out of the profession. If it is too difficult for them to do, step aside and let someone who will put in the extra effort take their places. If they just don't have the patience to deal with a disabled student, they should have never become teachers. Teachers are put in a classroom for one purpose -- to teach. Not just to teach to those who are easily taught. That is just like loving your family. It's easy. The challenge is to find a way for those children who have difficulty learning to learn. I seem to remember Jesus saying something about loving your enemy. It can be directly applied here. Again, this point it moot.

And my absolutely favorite -- we need to fix children with severe disabilities. This one makes me laugh hysterically when I hear it. How anyone could thing that a child needs to fixed is beyond me. When you look at my daughter, you see the most pure and innocent child you have ever seen. This is a child who is completely unblemished by sin. This is a child, who for the rest of her life, will look upon the world with the same child like curiosity and awe that she does right now as a 2-year old. This is a child who when she comes into the room, lights up the whole house. So, I ask, why does this child need to be "fixed"? So, she can lead a productive life. Productive in whose eyes? Again we are looking through societies eyes. Eyes that are so blinded by materialism and relativism that they don't see the forest for the trees. In fact they don't even see the trees, they see paper. Why on earth would I want to "fix" her. If a cure came out tomorrow for Rett Syndrome, would I use it? Of course I would. What parent would not heal their child if given the chance? However, we need to understand that these children do not need to be "fixed". It is us, and our warped sense of value, that needs to be fixed. Until we learn that the value of a person is in their soul, we are the ones that truly need to be fixed. Finally, this point is moot.

But, you still have not explained why having a child with a severe disability is such a blessing. Well, one reason really. It changes your life. It changes your life in such a way that even people with children do not understand. To make a commitment to a child with a severe disability is greater than any other earthly commitment you can make. Our daughter will live with us for the rest of her life. The prospect of that is very frightening. Not because I am scared to give her the care that she deserves, but scared to think what will happen to her should she outlive us. I pray that any other children we have will care for her in that case. That commitment has really forced me to reevaluate my life and what I hold to be important. I have learned more from living with and watching her then she could ever learn from me. She is always happy. Always. She doesn't have a cell phone. She doesn't have a car. She doesn't have a computer. She doesn't play sports. She doesn't go to the movies. She just loves and feels love. Imagine being able to do that. Just to love and feel loved. I can only imagine that is what heaven is like. When I am at work or away from her, I just want to be near hear and see her.

As a Catholic, we do not proclaim that we know we are going to heaven. That is up to God. We can be morally certain that we are going to heaven. And that I am. But I know, and I am sure that the Church would agree with me on this, that our daughter is bound for heaven. She does not have and never will have the capacity for sin. She is baptized. What can keep her from heaven? She is living saint. So, that makes me even more intent on making it to heaven. I want to be with her forever. I want to be a better person. I want to be just like her. I want to love and feel loved just as she does. I want to approach life the same infantile curiosity and awe that she does. That is why she is such a blessing to me. She makes me want to live my faith. She makes me want to be a better person. She makes me want to live the life of a Catholic.

19 Comments:

At 6:37 PM, Blogger BekahS. said...

Absolutely beautiful, Chris. You and your wife have been an inspiration to me.

 
At 6:45 PM, Blogger Chad said...

Ditto what Bekah said, Chris. It brought tears to my eyes, and every one of these people who want to end the lives of anyone not convenient to themselves or others needs to read it.

May God bless you and your family.

Chad

 
At 6:45 PM, Blogger Chris said...

Thanks. But it really is not me who is inspiring. My wife is the truly inspirational one. She lives with such a devotion to that little girl. I have devotion to her...but my wife's is unbelievable. She truly is the epitomy of a selfless servant. And I know that it is because God is working through her constantly. I wish that I had half of the grace that flows through her.

 
At 6:45 PM, Blogger Chris said...

This comment has been removed by a blog administrator.

 
At 9:36 AM, Blogger dcs said...

Chris,

That really is beautiful.

Soon after our daughter was born she was diagnosed with Beckwith-Wiedemann Syndrome. I remember at the time feeling jealous of other people whose kids seemed perfectly normal. But it hit me that our daughter being "normal" shouldn't be our main concern.

She doesn't really have any symptoms of BWS any more, except that one foot is bigger than the other and if you look really close you can see that one of her ears is bigger than the other, too.

I hope that if we had a child who was truly "disabled" that we would be able to reconcile ourselves to it as you have.

 
At 9:38 AM, Blogger st_ignatius110 said...

Chris, I am at work and IM CRYING!!!

As always, I am amazed at the selflessness of you and your wife. I have seen the pictures you posted on DCF..and your daughter is beautiful. No need to be "fixed." I see in her Jesus Christ, and I see the love of God being poured into her soul. God has indeed given you a great blessing. One thing that the world does not understand, and alot of Christians do not understand, is suffering and how we rejoice in it. Suffering is something that is good...it purifies us..and makes us more like Christ.
May God bless you and your family.

 
At 10:07 AM, Blogger Chris said...

Thank you everyone for the kind words.

And LJD, it was not us that reconciled Emma's disability. It was God. When you are faced with something like this, there is nothing you can do to reconcile it. There is not earthly way to explain it. There are no words that will comfort you. It is only through the grace of God that my wife and I are able to accept her disability and are able to accept our roles in her life. Without that grace, I fear that she would be lost and overshadowed by a world that sees her as inferior and broken.

God Bless!

 
At 8:40 PM, Blogger Ellie said...

I think I would rather have a child whose salvation was not a source of worry for me than one who was headed "the wrong way"...


Blessings to you for putting it in perspective.

 
At 11:22 PM, Blogger Leslie said...

Chris, don't be too hard on teachers. Even the best teacher can't teach a student who can't (or won't) learn. I think we all know that sticking 25 kids in a classroom for 38 minutes with one teacher is not the ideal way for them to learn, and it's even more difficult when the students' ability levels range the entire spectrum, but the teachers do the best they can. I don't so much think disabled kids should be kept out of the classroom on account of their disability; rather, I think they are too often put into the classroom on the basis of age, regardless of ability level. Schools are meant to be places of learning, and for that to happen we need to strive for the ideal learning environment. A nine-year-old who can't read should not be put in fourth grade English just because that's where the rest of the nine-year-olds are. Social interaction is for outside of school.

Sorry, my boyfriend's a teacher, as are his father and sister. It's a tough job and doesn't get nearly enough credit.

I completely agree with everything else you said. If only everyone could see people with disabilities as beautifully as you and your wife do. I'm always so happy and sad to see disabled children and adults as I go about my day... happy because it is such a blessing to have people of all kinds in this world, and they teach us so much about life. Sad because it stings to remember that in our country more disabled children are aborted than born.

God bless you, and your wife, and your beautiful saint of a daughter.

 
At 9:39 AM, Blogger st_ignatius110 said...

I wonder how in the world those one room school rooms used to work.

 
At 9:52 AM, Blogger dcs said...

I wonder how in the world those one room school rooms used to work.

In a word: admirably.

What is artificial about modern schools is not that they put disabled children together with "normal" children of the same age but that they group children together by age in the first place. One question I'm sometimes asked by non-homeschooling parents is "what about socialization?" One has to wonder whether it's healthy for children to only socialize with other children of the same age.

 
At 9:55 AM, Blogger dcs said...

Without that grace, I fear that she would be lost and overshadowed by a world that sees her as inferior and broken.

Yes!

We have to remember that we are all broken because of the Fall of our first parents. No wonder people view the disabled as "inferior and broken"; they don't believe in Original Sin any more.

 
At 10:57 AM, Blogger st_ignatius110 said...

What is artificial about modern schools is not that they put disabled children together with "normal" children of the same age but that they group children together by age in the first place. One question I'm sometimes asked by non-homeschooling parents is "what about socialization?" One has to wonder whether it's healthy for children to only socialize with other children of the same age.

I agree with this statement 100%. I do agree with the above poster that to many children are put into a classroom and they are not allowed to discipline as needed. But you know what, no matter how crowded a classroom is a child in highschool should be able to read. My little brother in laws, raised in public schools, are 16 and 19 and can barely read. Who cares? Not the school system. As long as their numbers look good no big deal. Of course, I am in the DISD and they are worse then other schools. I am also not saying that there are no good teachers...the problem is we group these kids in huge groups...all the same age...teach em from crappy materials...and then expect them to make it in the world.

 
At 1:20 PM, Blogger Leslie said...

LJD I completely agree with you also. Grouping children in classrooms by age is senseless. I didn't mean to sound as if I was only talking about 'disabled' vs 'normal' kids... ALL schooling should be done by ability level regardless of age.

I've become a quiet advocate of homeschooling. I think my bf (the teacher) is nervous about it (since, if everyone homeschooled, he'd not have a job). And yet, to hear him talk about what goes on in schools today, one wonders why he would ever want to put our future children in such a place. I predict we will have a lot of discussions about it...

 
At 2:48 PM, Blogger dcs said...

ALL schooling should be done by ability level regardless of age.

Yes, but also I don't think it's necessary to segregate children by ability. Children who excel at certain subjects might be given the opportunity to study on their own (in fact, when I was in 4th grade I had a teacher who let me do just that -- she taught the other kids math while I just took the tests to see which level I was at). Or they might spend some time helping their fellows. Children who are lagging behind might be given special attention. But still, I think it's natural for children to spend most of their time interacting with one another regardless of their age or ability.

 
At 12:53 PM, Blogger BekahS. said...

This is what I have found attractive about Maria Montessori's theories. The children are grouped in multi-age groupings, but when they acheive a certain competency level, they progress into the next classroom. The schools more accurately depict family/real life.

Instead of creating an artificial environment, schools would do better to mimic the real world, especially forming themselves around the family model, with a learning facilitator (teacher/parent) and a small group of multiage (yet not too separated in ability) children. For example, in my family, I have two older children whose work is separated in ability by about one grade level (science, history, religion can be handled together, reading and math are independent), and two younger children who are in baby/toddlerhood. If we were to mold classrooms around a typical family, such as mine, we might create a classroom spanning 3 grade levels, with 6-8 children per facilitator. Very similar to a Montessori setup, which has a lead teacher, plus a few aides (ideally) per classroom.

Why mess with what God designed for the proper education and raising of children? :)

 
At 11:14 AM, Blogger st_ignatius110 said...

I find it very interesting the effects that communism has had on America. Our politics were greatly influenced by communism and I think this is reflected in daily life. When the communists took over Russia they imposed strict rules on families because they knew a strong family could tear down their regime. First, there were curfews. Then men and women were forced to work outside the home, and in different shifts which meant that the family was rarely together. Children were forced to go to government run schools, they were bussed in. Then the young men and women were taken on "outings" in the forest, away from parents and all authority and allowed to "experiment." Abortion was introduced as a form of birth control.
I think if we all think carefully we can see the similarities between communism and the way we live now in America. Public schools, being bussed to the schools, mom and dad have to work to surive( I realize this is not all people but it is many)families are rarely together anymore...teenagers are allowed to "experiement" and it is allowable and even talked about favorably...birth control is no longer only a pill...it is the out and out murder of an unborn child.

 
At 2:47 PM, Blogger dcs said...

We had a priest friend over for dinner on Saturday night and my wife was recounting some of more "interesting" stories of our block (drugs, etc.). He asked if we were looking anywhere else to buy a house and we told him about the ridiculous price of real estate in our area (homes are going for $170,000 in our neighborhood now; we bought ours for about $65,000 seven years ago). Everything in our economy is price for a two-income family. Everything.

 
At 4:10 PM, Blogger st_ignatius110 said...

Yes, ours is like that as well. We live in a neighborhood that is getting worse and worse. Saturday night one of our cousins got shot in the head...just down the street from us. She was not involved in anything bad...just driving around with her boyfriend...guys are trying to holler at her...boyfriend tells em something...they get mad and chase them..catch up to em at a red light...and shoot her in the head. That's how my neighborhood is now. Houses are going for about 100,000...crappy houses that leak..we bought ours for 50,000...and the ones down the street in the really nice part of town...it is quiet...no murders..no drugs...no gangs...ohhh...only about 300,000..and that is minimum.

 

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