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.