I guess maybe it’s about time I expanded a little on the title of my blog. It has a very important meaning to me, rooted in part by a letter written to me by a dear friend of mine in Alabama.
Obviously, her name is Juliet. She also has a daughter with special needs, along with two “regular” sons. I met her in Philadelphia several years ago at a very cool place called The Institutes for the Achievement of Human Potential. I won’t go into all of that here, except to say it is a wonderful place where miracles happen every day–for some people. They use alternatives to main stream therapy to help dramatically improve the condition of many brain injured kids. Parents can attend a seminar of sorts to learn this methodology and apply it to their own lives. As usual, Evelyn didn’t feel compelled to cooperate with any of my attempts to cure her, and it didn’t work out for us. However, it is an excellent program and Juliet was at the seminar as well.
Alow me a very brief aside to say that while we were at this seminar, we received a nice little narrative about how God and the angels were looking through a list of prospective parents and assigning them to the children which were soon to be on the way. It told how the parents of special needs children were extra special. What was it called? The Special Mother.
Back to the point. Juliet is a fantastic person. As with nearly all of the people I tend to gravitate towards, she is a very plain-spoken, honest person. She’s not obnoxious about it, but if you ask her a question, she will tell you the truth. Period. She is a caring mother, and she likes to laugh. All qualities that are way up on my list.
She is also a person of great faith. In this area, I am particularly lacking, and she is a comfort to me. We have had some in-depth conversations about our kids, but there is one occasion (the point of this post, actually) that stood out then and now. Evelyn had her first seizure in May of 2006. I was still in my own head back then (well, even more than usual, if you can imagine) and was still trying to cope with life in general, and the seizure did not do much to help my mental state. I wrote Juliet a letter that I suppose was basically just an exercise in self-pity. Poor me. Why now? Boo, hoo, hoo.
Well, instead of writing me back and telling me to get over myself, which she would have been absolutely correct to do, she wrote me back and provided me with what would eventually be the foundation of my life’s philosophy. I’ll give you a summary of what she said. These are MY words. I don’t want her to sue me or anything.
Juliet told me that while neat little poems about special needs kids being given to special parents were very nice, they were essentially crap. (My words, folks, my words.) Special needs kids are given to horrible parents all the time. She said God never promised us everything would be easy for us, just that He would guide us if would ask Him. Also, she said that if you truly believed in an eternal God and therefore an eternal soul, then she felt that the eternal viewpoint would be VERY different from our viewpoint in this life–similar to the difference between an adult and a child. We, as adults, can look back on the things that we thought were truly horrible when we were children–things that we thought were literally the end of our worlds–and we can laugh about them. We can see how they really weren’t that big of a deal at all. Juliet told me that she believed it would be the same–in eternity, the struggles of this life would be insignificant.
Now, I am not particularly religious, and my faith is somewhat watery. I am Thomas. I probably would have asked Jesus for two forms of I.D. as well. However, her answer to me meant more to me than any church service ever had. She believed what she said, and she said it in kindness and sympathy, and even with humor. I will never forget it.
I had to do a lot of growing up and a lot of letting go to finally be able to accept the fact that our life is what it is. I am NOT a special mother. I am just a regular mother, better than some, maybe, but undoubtedly worse than others. Doubt lingers, faith comes and goes, but still I plug along. Lots of people are not so fortunate as me, even though some days I feel anything but fortunate. Like I said, most days I feel (not so) special.