A Letter From Juliet

     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.

Nap, Interrupted

     I am not a morning person. To say that is similar to saying something like Hitler was not a nice guy, or the sun is warm. However, to put into words how I actually feel about mornings seems a bit dramatic. For example, I could say, I hate mornings with the firey passion of ten thousand white hot suns. Like I said, dramatic, right? Still….

     This fact is not a secret. However, one thing that remains a mystery to me personally is how I ended up surrounded by morning people. Not only did I marry a morning person, I then proceeded to conceive and subsequently give birth to two more morning people. To be fair, they are aware of my particular hatred of the a.m. hours, and usually they do pretty well at avoiding unnecessary contact with me. They have a fairly comprehensive grasp of the appropriate morning etiquette here in Janiceland. They don’t ask questions that require more than a one-word answer (preferrably yes or no, or even a grunt if possible), they avoid making direct eye contact with me, and they can usually entertain themselves for an hour or so until my brain finally concedes and decides to join my body in the land of the living.

     This is not to say that I can’t be productive in the morning. Quite the opposite. I do lots of stuff in the mornings–I get my daughter up and running, I get Mindy up, I do whatever housework requires immediate attention–but these are all mundane things that my body can do without the aid of a fully functioning brain. I get up at 6:00 every morning. I wake up around 9:00.

     So anyway, here I am, surrounded by morning people, trying to figure out how I can work a nap into my day. I do this EVERY DAY. I think it may be a little sad that one of the first things I think when I hear the alarm go off is, “I wonder if I’ll be able to nap today?”  As it turns out, the answer is no. I’ll get everything done that I think needs to be done. Everyone fed, lessons done, lunch served, kitchen cleaned, etc., etc., and then I’ll mosey into the living room to sit in the recliner. I sit for say, five minutes, then whoops! I just thought of something else. Or the phone rings. Or someone needs me to do something. This pattern is so predictable, I’m not sure why I even bother. Maybe it’s to amuse myself, I don’t know, or maybe I’m a hopeless optimist. Yeah, that’s probably it (cue heavy sarcasm.)

     Maybe one day I will get to take a nap. I guess it boils down to hope. There’s nothing I can do about having to get up in the mornings, but maybe there is hope that one day I will get to take a nap. Just a short one, nothing too fancy. I’ll probably feel like crap when I wake up.

A Hair-rowing Experience

     My ten-year-old daughter, Evelyn, went for a hair cut recently. To the uninformed, that sounds reasonably benign. Usually by the time a child is ten, they have overcome most of those little fears and phobias that plague our toddlers. My son, for example, doesn’t necessarily like getting his hair cut, but he is now old enough to tolerate it.

     Not Evelyn.

     Because of her delays, Evelyn has a lot of sensory issues. For example, she is undersensitive to sounds. Loud sounds have never bothered her. She loves loud groups of kids, funny sounds, whatever. However, she is oversensitive to touch, and that is a major understatement. When she was a baby, she could gag just from touching something. She isn’t nearly as sensitive now, but she hates, hates, hates it when anyone has to fool with her hair, brush her teeth, or basically intrude upon her person in any way. 

     As you can imagine, cutting her hair is lots of fun. She climbs into the chair calmly enough, and if the stylist could figure out some way to cut her hair in, say, 40 seconds, things would be fine.  That’s about as long as Evelyn can tolerate the pinning up of the top layers, the spraying of the water, etc. Then the situation begins to deteriorate. Rapidly.

     I basically hold her down for the whole thing. She yells and struggles and tosses her head. It’s loads of fun. Here’s another scenario for you. I have to do the same thing every day when I brush her teeth.  It’s awful, but what am I supposed to do? If you don’t believe God has a sense of humor, consider the fact that my daughter has the thickest, heaviest head of hair I have ever seen. Ever. It couldn’t be left long, because she can’t stand any headbands or anything.  Also, when it gets too long, she gets food in it when she eats. Also, she can’t stand to have it washed or combed, so I have to fight through those things as well. Imagine that with long hair. No thanks. In short, her hair has to be cut. Obviously, her teeth have to be brushed, too. It’s not like I can just quit doing those things.

     It doesn’t really bother me all that much. The only thing that is moderately concerning to me is that she just keeps getting bigger and stronger, and I don’t. What happens when she gets bigger than me, or at least as big as me? She knows her teeth have to be brushed. Never once have I NOT brushed her teeth because she struggled. Yet she struggles with me every day, without fail, and has done so since the very first time I brushed her teeth all those years ago. So, I haven’t given up, or given in, but neither has she. More than that, she has great instincts. In the nearly five years she has been in public school, the school nurse has never once been able to take her temperature. Never once. Evelyn can smell fear a mile away.

          So anyway, a trip to the hair stylist is quite an odessy for us. I don’t know what the future holds. All I can say is, if you see a battered woman walking around with what appears to be Cousin Itt with rotten teeth, be sure and say “Hi.” And don’t try to touch Itt’s head.

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