(not so) Super Hero

When you’re a teenager, you spend a lot of time figuring out exactly the path you want your life to take. You’re going to be married (or not), have kids (or not), have such and such career, live here, work there–on and on.

Life sure is funny sometimes, isn’t it?

I think one of the biggest rites of passage from the teen years into actual adulthood is when you start to realize that the things you wanted and the things you actually have really have nothing to do with each other.

Me? I wanted to be a marine biologist. I was going to work and live between Alaska and Hawaii, studying marine mammals. I would become a leading expert in the field, maybe appearing in National Geographic occasionally just for variety. I didn’t much care if I was married or not, and I certainly didn’t want any kids to slow me down.

I am not a marine biologist, incidentally. I am a caregiver.

What happened? Life, that’s all.

This isn’t a biography. I hold no delusions that the boring tale of my transformation into the ultimate soccer mom I am today is of any interest to anyone. It will suffice to say I am married with two children. Also, and the full time caregiver to my sister. Oh, and my 14 year old daughter is also permanently disabled, and I’m her caregiver, too.

My sister and my daughter’s disabilities are very different. My sister has CP, and my daughter has an undiagnosed neuromuscular disease. Sister is non ambulatory. Daughter ambulates a little, but poorly, and is a fall risk because of seizures.

So, you may be asking, what’s my point?

As with most of my writing, there is little point. (Sorry.) But I heard something the other day that seemed insignificant at first, then began to gnaw at my mind and churn around in there (along with the lyrics to hundreds of songs and a vast library of movie quotes) until I finally had to write about it.

Someone called me a superhero.

Let me start by saying I wouldn’t be caught dead in tights or a unitard or anything else that is the going fashion among the superhero community (you should be grateful–trust me.)

Mostly, though, the comment left me feeling a little disappointed in the way caregivers are viewed in our society.

As a full time, total care caregiver for two people with disabilities, I can assure you I am many, many things, some good and some (not so) good, but a superhero isn’t one of them. I’m not even side-kick material.

Superheroes don’t get tired. They are strong and fearless and they always save the day and solve the problem. They always beat the bad guy. Superheroes swoop in, set everything right, and fly away to do whatever it is superheroes do when they aren’t superhero-ing.

I am painfully non-super.

Tired doesn’t even begin to describe the level of physical and mental exhaustion I can experience. I’m physically strong (I like to think I have a dependable, pack-mule type build), and I act fearlessly when necessary, but I am afraid almost all of the time. Sometimes I feel like a total emotional weakling.

The biggest difference is that I can’t really set things right or beat the bad guy. Oh, I can manage day-to-day life pretty well. Everyone is clean and fed and warm and (hopefully) happy. I can change a diaper with one hand. I can administer meds in all sorts of fun ways, and I can load, strap, unstrap and unload a wheelchair in Olympic-gold-medal-worthy fashion.

What I can’t do, though, is beat the real bad guy.

I can’t make Sister or Daughter’s disabilities go away. We manage symptoms. We fight fires and try to prevent new ones, but I can’t make Sister walk, or Daughter talk, and I surely can’t make their lives “normal.” I can’t swoop in and destroy all the things that are basically just mean–things that take and tighten and weaken and hurt and sting and crush. Hell, I can’t swoop at all.

I would also be willing to bet that superheroes never have days when they are almost drowning in self-pity. They probably never sit morosely on the side of the bed and think, “why does everything have to be so hard?” They never have secret, hateful moments when they wonder what happened to those dreams and plans they had when they were teenagers. They certainly never have weak moments when they wonder if their lives will ever be anything more than an endless cycle of cleaning and feeding and medicating and entertaining. Obviously, I don’t have super powers.

I’ll tell you what I do have, though: a very important job.

My job is far more important than any role I could have ever played in the marine mammal world. I don’t think I’ll every make it into National Geographic, but I’m okay with that. Sister and Daughter rely on me to take care of their physical needs–that’s obvious. That’s what caregivers do, right? Provide physical care? Yes, but we do so much more.

I am the link between my people and the rest of the world. I make them aware of the world, and, more importantly, I make the world aware of them. I advocate for them, and I make sure others treat them fairly. I work very hard to make others see Sister and Daughter for what they are–a 36 year old woman and 14 year old girl. Each unique. Each wonderful in their own way, just as we all are.

In short, I am their voice.

Somehow, this seems infinitely more important than wiping a bottom or administering a pill. It is the heart of what we do, the very essence of caregiving, and we are doing it with plain, boring, every day skills. We aren’t superheroes. We are sisters, and brothers, and mothers, and fathers, and wives, and husbands, and children, and so many more. We are caregivers.

And, if you ask me, that’s pretty super.

anxietygirl

The Other Brother

There are volumes written about special needs kids.  We talk about them on the news, on television shows, and on blogs.  There are speculations about what causes Autism, and stories about the lives of families who live with various challenges.

There is another population, though, that we don’t hear much about.  In my mind, I’ve always thought of them (us) as “the others.”

These are the kids who don’t have special needs.  They are “typical,” or “normal,” or whatever word is the PC norm these days.  They are the brothers and sisters of the special needs kids that we hear about on the news.

They are part of the background.

I think I have an unusual perspective.  I am both a sibling and a parent of a special needs individual.  I know the demands–emotionally, physically, and time-wise–of parenting a special needs child.  I also know what it’s like to be the “normal” part of the special needs equation.

It’s tough.

Now I have a son who is in the same position I was as a child, so I know.  I know a lot of how he feels, and how hard it can be.

Even though you know your parents love you, and you know they provide for all of your needs, it is hard sometimes to deal with the fact that your sister needs so much more.  It isn’t anyone’s fault, or choice, but the situation remains the same.  Looking back as an adult, especially since I have a special needs daughter now, it is very clear.  But I remember what it was like as a kid.  I remember how it seemed like I wasn’t as important as my sister, how everyone was fighting for her educational needs, and how I felt like everyone just assumed I was okay.

Here’s the kicker: I was okay.  I just didn’t think so at the time.

Like I said, now I can see that I was wrong to feel that way.  The simple fact is, my sister’s needs were greater.  She couldn’t fight for herself, so someone else had to.  If I hadn’t been such a selfish shit, I could have fought for her, too.

My son is so much better than me.  Already he is very defensive of his sister.  Don’t get me wrong–they have their moments, just like my sister and I still have our moments.  I’ve written before about how our relationship was a very typical sister relationship.  My kids are the same–she’s in his room, he changes her TV channel, she’s touching his stuff, she hits him on the head with a spoon–you get it.  But I digress.  My point was that he is very understanding of his sister, and he watches out for her.  He told me a while back that she was going to live with him when he got older, so I could have a break.

Yeah, I know.

I have tried very, VERY hard over the years to make sure my son always knew that he was just as important as his sister.  I have fought tooth and nail for his education.  We load up just like the Beverly Hillbillies and head off to soccer games.  We camp, and go to the beach, and the zoo, and anywhere else we want to go.  Sure, it would be easier to stay home.  It’s very tempting, especially as the years go by and I’m getting a little older and a little slower.  But it isn’t just my son who gets to experience all of these wonderful things–it’s all of us.  And so it’s worth it.  It’s important for ALL of us to do things besides run to the doctor or the therapist.

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This is all of us, with the exception of my husband taking the picture, walking back from a sort-of local nature center.  That’s my daughter riding on my sister’s lap, and my son riding on the back of her wheelchair.  I’m driving.  My sister’s sight line was impaired by the large child in her face.

Even though it can be challenging to be one of these “other” siblings, there are benefits, too.

We others have little or no difficulty accepting people with various levels of challenges.  It’s no big deal to us.  We can talk to people with special needs without discomfort or doubt.  We like to look at various wheelchairs people are riding and chat with them about speed and handling.  We can see beyond what is on the surface, and realize the beautiful people who lie within.  These other, (not so) normal siblings are more kind-hearted, and courageous, and understanding.  They despise bullies, and most aren’t afraid to stand up to them.

My son is all of these things and more.  He has the capacity for amazing kindness, and a tolerance that outshines most adults I now.  He has cornered the market on compassion.  I would have a much more difficult time making it through my day if it wasn’t for my son.  We would all do well to learn from these other siblings, the ones who stand in the background.

Do these others have special needs?  No.  But can we call them normal? Ordinary?

No way.

 


 

Saint in a Wheelchair

Sometimes I think our lives consist of one misconception after another.  This is mostly true with things people don’t have personal experience with.  For example, I have the misconception that all politicians are crooked liars who would knock their own mothers off a chair if they thought she was sitting on a dollar.  Of course, this misconception happens to be true, but still.

Nowhere is the misconception problem more prevalent than in the world of special needs.  I am always fascinated by how people view individuals with special needs.  As both a mother and a sister to people with severe disabilities, I feel I can speak with a reasonable amount of knowledge on this subject.  (Disclaimer: I have no doubt that there will be someone who will tell me that every single point I am getting ready to make is wrong, and that their experience is the exact opposite of what I am saying, and that the person they care for is an angel.  Allow me to say, in advance, good for you.  Get your own blog.)

Usually I talk about my daughter, but this post is about someone else: my sister Mindy.

That’s her, several years ago.  She has spastic Cerebral Palsy.  She was born extremely premature–today they are called “super-preemies,” but when she was born there was no such term.  She had a twin sister who lived for almost eight months in the hospital.

Everywhere we go, I run into someone who knows Mindy (and a thousand curses to all of those who ask if I am her mother.)  She also attends church, and has for most of her life, so that adds another demographic to the “people who know Mindy” population.  Everyone person who knows her loves her, and they think she is God’s angel right here on Earth, a blessing and an example of how to live a humble, accepting life.  They pet her and use words like “poor little thing.” Worse, they talk about how wonderful I am for taking care of her, how patient I am, and someone even told me there would be a jewel in my crown.

Crown?  I think I must have misplaced it.  Probably it fell off when I was banging my head against the wall.

Mindy can be a truly remarkable person.  For most of her life, she was a very calm, mild-mannered, unassuming person who smiled most of the time.  But things have changed as the years have gone by.  She’s having trouble with depression.  She takes medication for mood stabilization and to help her sleep.  She has poor impulse control and some OCD stuff.

In other words, she’s just a human being.

To assume that she has super abilities to be patient and accepting is to dehumanize her.  No one can be perfectly patient and perfectly accepting all the time.  Add into it that she has more reason than most people I know to be depressed or angry, and you see the problem.

Mindy’s body is her enemy.  Her mind is actually quite good.  I won’t say that she has the same cognitive ability as a so-called normal person, but certainly she has more than, say, members of Congress.  Anyway, her mind is pretty much okay, but her body is her prison.  It won’t move like she wants it to.  She can’t do anything for herself.  Anything that requires muscles (including eyes) is compromised.  But I’m not telling you this to get you to feel sorry for her.  There are some things I think everyone should consider, not just about Mindy, but about any special needs person you may know.

  • Mindy wanted all the same things we all did–a job, marriage, kids–just an independent life.  She is 32 years old now, and she has to cope with the fact that she can’t have those things.
  • It’s not her job to be a  blessing or set an example for you.  If she does, fine, but if she doesn’t, that’s fine too.
  • She is just like everyone else.  She has mood swings and tantrums.  She has good days and not-so-good days.  Again, I think that just means she’s human.
  • The relationship I have with Mindy is a lot less special than you probably think it is.  We are sisters.  If you have a sister, I doubt if you need any explanation.  We argue about something every single day.  She calls me some not-so-nice names very frequently.  I, having only slightly more self-control, don’t call her names, although they certainly cross my mind.  Once, when we were teenagers, we were arguing over a television program.  She turned in her power wheelchair and charged me.  She rammed my rocking chair with the force of a rampaging bull.  Shouting and tears followed.
  • She doesn’t like it when people talk to her like she is two years old, which is often.  They pet her head and get right in her face to talk.  Would you like it if I did that to you? It would be ridiculous if I did to you, wouldn’t it?  You’d think I had lost my mind.  Yet it’s okay for someone to talk to my sister that way.  Remember, she is 32-year-old woman.
  • She understands everything you are saying.   It might take her a long time to respond because it’s hard for her to get her mouth working the right way.  People will ask her a question and then keep going without waiting for the answer.  They assume she can’t talk.  In short, they overlook her.  She’s almost an inanimate object to them.
  • Lay off her wheelchair.  That chair is a part of her body.  She is in it all day, every day.  When you touch it or lean on it, it’s the same as if you were touching her person.  It’s a part of her personal space.  Yes, I lean on it and hang my purse from it, but I’m allowed.  (Maybe that’s why she calls me the bad names.  Hmmm…..)
  • Just because she is sitting down doesn’t mean she is less than you.  She’s in this world the same as the rest of us.  She deserves the same rights and considerations as all of you ambulatory folks.

I think what it boils down to is respect.  Respect her, and others, as people.  They are not saints, or angels.  Some of them might be super-sweet people who never have a bad word to say, but some of them might be short-tempered and irritable (like me.)  In short, they are varied,  because they are people, and no two people are just alike.  They want what you want–to be treated with respect and understanding.

And to watch their program on TV.  If not, they might just knock you out of your chair.

 

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Mourning in Never-land

Recently, the mother of a special needs child wrote a post that went viral on the Internet.  This post wasn’t triggered by the blog, but rather a follow-up comment by the author.  She remarked that someone had told her she should mourn her daughter and get over it (that’s my paraphrase.)

Now, her daughter didn’t die–she was born with special needs, so to some, the word “mourn” may seem like an odd one.  But when you have a child with special needs, you do mourn.

You do.

To some it may seem like self-pity.  I don’t know–maybe it is.  Some people might be tempted to judge me for saying what I’m going to say, but I’m only telling the truth.  When, as a woman (because it’s much more difficult for a man,) you decide to have a baby, plans start to form in your head.  It’s silly, but you start thinking about what they might do or be, and what they might look like.  Then, you find out it’s a girl.  You start to think about weddings, and grandchildren.

Then at some point, all of that is over.  Forever.

Never, ever think that I compare this to the actual grief of losing a child.  It’s different.  But it’s bad.  It hurts.  And what’s more, the mourning happens over and over as the years go by.

So-called experts talk about the grief process.  They name the steps: denial (Maybe she’s just a little behind.); anger (Why, God? What did we ever do to you? What did this helpless little baby every do?);  bargaining (Whatever you want, God, okay? Kill me, whatever. Okay? OKAY?);  depression (What now? How do I face this? Do I even want to try?);  and acceptance (I’ll get back to you on this one.)  But here’s the thing–the grief process can’t be listed neatly into five little steps.  This also implies that there is an end to grieving, and I don’t think there is.  I don’t think the pain ever really goes away.  It just changes, and hides, and then pops up unexpectedly over the years to hit you again.  And again.  And again.

Almost eleven years ago, there was a little girl who was supposed to be born.  That little girl was going to blaze a trail.  Super smart, independent, and ready for anything.  She would get married some day and give her mommy a brood of grandchildren to fuss over.

That little girl was never born.

Instead, Evelyn was born.  She’s blazing a trail in her own way, and I can’t imagine my life without her.  But there are some things I had to let go of–some things I had to mourn, and that I’m mourning still.

I’ve been through every one of those stages, and more than once.  Even denial, which I’ve always thought I was immune to, has appeared over the years, usually in my obsessive quest for a diagnosis.

Most of my grief is tied in to the things I feel like she’ll miss out on.  All of the nevers.  She’ll never get married.  Never have kids.  Never go to college.  Never have a boyfriend break her heart.  Never, never, never.  I’ve had to let each of those things go, one by one.

Sometimes, that little girl who I thought was going to be born all those years ago haunts me.  She skips up and down the toy aisle at Christmas time.  She’s out running with her brother on the soccer field.  She talks incessantly to me like her brother does.  She gets into shouting matches with him, and sings along to songs on the radio.  She’s worrying about clothes, and starting to talk about boys.  I catch glimpses of her sometimes, but when I turn to look at her, she’s already gone.  I have to let her go again.

So you mourn.  I think as the years go by, I will learn to get over all of that.  Certainly I can “accept” it more now than before.  But I’m a firm believer in what I said–that pain never really goes away.  You learn to live with it, and yes, even accept it.  I think that’s what acceptance really means.  Not that you’re okay with the way things are, but that you realize you can’t change it, and you learn to live with it.

Living with Evelyn is the easy part.  She’s the joy of my life.  She brings something to us that I can’t even explain.  She doesn’t know or care about the things she’s “missing out” on (according to me.)  She gives me a good example of how to live–live for the moment, forget about yesterday, and don’t worry about tomorrow.  Mostly, forget about the things you can’t change.

I’m still working on that one.

 

 

(not so) Politically Correct

     Words are very powerful things.  Obviously I think so, since I use them so much.  One of the lessons I always try to teach my kids is how important words are, and what a profound effect they can have on people.  Also, that words cause a different kind of hurt–cuts and bruises heal, but words can never, ever, be unsaid.  That’s why I raised them to say things like “I’m mad at you” instead of “I hate you.” (Well, Evelyn doesn’t actually say anything. She just hits you when she’s pissed, but that’s another topic altogether.)

     Having said all of that, I think maybe everyone has lost their mind.  Even I have fallen victim to it, and I didn’t really realize it until today.  I found an awesome online community called “Underground Moms.”  It’s a group I fit in to very well, and so that should give you some idea of what it’s like.  Check it out.

     Anyway, I registered my blog, and there’s a spot to make a little statement about yourself for everyone to see, and I referred to my children as “typical” and “special needs.”  I refer to them in those terms most of the time when the context calls for it, and I never even thought about it until today.  Suddenly, it just hit me.  What the hell does that mean? Typical?  Special needs?  WTF??????  What common sense and logic tell me is that I should say I have a normal kid and a disabled or handicapped kid.  These terms do not offend me, and since they are my children, that’s what should matter, right?

     Wrong.

     I’ve been around handicapped kids my whole life.  I was three when my sister was born, so I have no memory of a life without her.  She went to school both before and after mainstreaming took place (another blog topic I could hit that I bet would get me some hate mail) and I spent a lot time at her “special school.”  So anyway, it really doesn’t phase me.  And we called them handicapped kids.  In fact, the program which is run by the state of West Virginia to assist families with handicapped kids used to be called “Handicapped Children.”  Guess what it’s called now?  “Children With Special Health Care Needs.”  Really.  Because at some point, someone got offended.  Even the normal kids can’t be called normal, because that implies that the handicapped kids are abnormal.  So now those kids are typical, and the newest term I’ve heard which seems to becoming popular is neurotypical.     

     What is happening to us?  We are so worried about offending someone, and some brain somewhere comes up with this crap, but it has nothing to do with reality.  Maybe we should be a tad more concerned about the fact that we are raising a generation of children to be morally void automatons who have no empathy, ethics, or education.  But that, of course, is just my opinion.

    It seems like we are trying so hard to make it seem like a disabled child is just like all of the other children, but here’s a news flash, folks–they aren’t.  My daughter is different, damn it, and she is special, and yes, she has special needs, but she is handicapped, too.  I’m not ashamed of it, and I don’t have to try and put some pretty, PC phrase on her to make myself feel better.  Maybe normal isn’t a great word, because really and truly none of us are normal–certainly no one in this house–but I guess it’s as good a word as any. 

    Ultimately, I guess what I’m trying to say is that maybe we should get to know the kids themselves instead of worrying about what they are called.  For Evelyn alone, there are thousands of words I could give you that describe her–angel, for example, or devil, depending on the day–but there’s only two that mean anything to me:

Daughter.  Mine.

Dental Hell

“We have nothing to fear but fear itself–and the dentist.” Someone other than Winston Churchill

!!!!!!!!!!!WARNING!!!!!!!!!!!!

THIS BLOG POST CONTAINS LARGE AMOUNTS OF SELF PITY

     It says in the Bible that the sins of the father shall be visited even unto the seventh generation (or something like that) and I think it may be true.  I have carefully avoided the dentist for most of my adult life, and now I’m paying for it. Sad part is, my daughter is apparently caught up in that whole seventh generation thing, too.

     I’ve recently become more acquainted with the dentist than I ever wanted. A few grand later, I am now a great believer in the dentist. I’m a dental zealot. I will go to the dentist every six months until the day I die, even if my family has to roll me through the door in a hospital bed. I will never, ever, neglect my teeth again.  My mouth, or my wallet, could not survive the trauma again. So, I’ve learned my lesson, right? End of story. Right? Right?!?

     Right.

     Evelyn’s feelings about the dentist transcend fear. She views the dentist office as some sort of torture chamber. She has to be held down, people are touching her head AND rooting around in her mouth. Now, since the routine cleaning thing isn’t traumatic enough, she is having some problems of an orthodontic nature. Her teeth are clean and healthy, and she has always gone to the dentist regularly, but they just aren’t where they should be. I won’t go into all of it–it’s too depressing.  In short, she has a very small jaw (the medical term for that, folks, is micrognathia) and there just simply isn’t enough room for all of her teeth.  So this time she had to have x-rays, which we never did before, and wasn’t that fun! She was already so royally pissed by the time the routine stuff started, the whole thing was a nightmare. We were all sweating, some of us (not naming names) were crying, and I was exhausted.  Obviously, Evelyn won’t every be wearing braces, or an expander, or any of the various orthodontic equipment that would normally be used for someone with her dental problems. The best option for her will be to remove some teeth, but she has to have that surgically done (obviously), which means a trip to the hospital and general anesthesia.

     Why of why must everything be so difficult for her? Look out, this is where the self-pity comes in–I don’t understand why she can’t ever get a break.  Even dental procedures become an ordeal that involves the hospital, anesthesia risks, recovery, blah, blah, blah.  Couldn’t one thing, just one damn little freaking thing be simple for her, and let’s be honest here, for me?

     Okay, that’s all. I guess.  I have no idea what the answer to any of those questions is, and I don’t think anyone else does, either, so there isn’t really a reason to ask them.  I just have to look at the big picture, whatever the hell THAT means, and see that she will feel better when this is all over, and she will be happier if she’s asleep through the whole thing. Didn’t I have sedation through my extensive procedures? (Yes, I did.) What’s the difference?  She won’t ever know a thing about any of it, and I’m sure that’s how she wants it.

     Why are we all so afraid of the dentist? I have a healthy fear of the entire medical profession, but the dentist is in a class of his own.  I have tattoos, I’ve had surgery, and still I sit in the dentist office waiting room with sweating palms, a pounding heart, and a racing mind. Beats me. Maybe because you’re awake for the actual stuff that’s happening, or maybe it’s something that’s just passed along from generation to generation. To be honest, I had little to no discomfort with all of the work I recently had  done, and a toothache hurts WAY worse than anything the dentist has ever done, but still…….

     There’s nothing for it, I guess. We’ll just have to be afraid. But do me (and yourself!) a favor and tough it out. I’m not much of an advice-giver, but I’ll give you some, and it’s a LOT cheaper than a visit to the dentist.  Take care of your teeth. Really.  Do it for me, or, if you don’t want to do that, do it for Evelyn. I guarantee she hates the dentist more than you do.

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.

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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