I know, once again, it has been a decade since you have heard from me, but just to ease your suffering, I am still alive.
I read an article a few days ago entitled something like “The Privacy of Children with Disabilities”. That is probably not the exact title, but you get the point. In summary, it was about the privacy.. of children.. with disabilities. I agree with most of what the article said; what is written or recorded about a child should really be up to the child, no matter how young; however, there are some aspects of it I do not feel 100 percent about. Okay, okay, I will link you to the article, because I am a halfway decent person and I like to give credit where credit is due –> HERE <– GO.
I am going to be honest, when Dillon was born, I did not consider keeping his disability private. I did not consider it because to me, his disability is just one of his many characteristics that make him unique. We are all unique, we are all different, and when it comes to physical attributes, I do not really believe in the word flaw. We were all fearfully and wonderfully made. When you draw a beautiful picture, and then you are handed another blank canvas, you do not draw the exact same picture, you draw another beautiful picture of something different. In my opinion, God, along with a million other wonderful things, is an artist. He created you exactly how He wanted you to look, and it is wonderful, and it is unique.
I could argue with myself here and wonder why God would create, for example, an infant with anencephaly, but the thing is, I would be sitting here wondering all day, because I am a human, and it is ridiculous of me to think that I could compare my thoughts with those of God. As humans, we are curious, and we have this erroneous belief that it is our birthright to know everything. News flash, accept the fact that we do not have the ability to answer every question. I have no doubt, that until the destruction of the earth or the extinction of the human race, we will continue to research and slave for answers to every little detail or reason as to why we are here, or what our purpose is, or how we can survive. We have come a long way, and science has done many great things, but our knowledge of this world is finite. That is not to say we will not continue to make miraculous advancements in medicine and technology until the end of time, but those advancements will be contained within the realm of our limits. It is good to be curious. I, more than anyone I know, love discovering how things work, but I am not going to make an assumption about something just because I am not able to arrive at an explicit empirical solution. We should occasionally embrace mystery. God is mysterious, but have faith that He is good, and just be content with that (I am preaching to myself here).
Anyway, sorry I just went off on a tangent. Back to the point of my post..
Even though there are many people who gracefully accept differences, unfortunately, there exists people who do not. Dillon is almost three, but he does not understand blogging just yet. I will do my best to keep the “TMI” details of his life to myself, until he is old enough to provide permission to release said information. However, before he was born, I remember how inspiring it was to read other blogs about children who have spina bifida. I was so interested in all of the little details, so it is difficult to not want to provide that for other people. It is an internal struggle, but the respect for my child, of course, will always win. I have no idea how Dillon will feel about all of this when he is older, so I will try to be careful not to expose anything he would not appreciate.
If you would like to see how my beautiful child is doing, click on the image below to watch our six-minute Christmas video. 🙂