Friday, April 29, 2011

A Glimpse of one part of my life...

I was sitting downstairs in what we call "The Tropical Getaway", which is in reality just the corner in the basement that my sweet husband fixed up just for me. It's where I go to meditate when the weather is wet, or winter and I can't get outside to my deck. But I digress-I was sitting down there meditating, and my mind was wandering around the issues of my becoming disabled.

I remember the exact moment I first felt the excruciating pain of RSD. RSD stands for Reflex Sympathetic Dystrophy. Also known as CRPS.Anyway, according to the National Organization for Rare Diseases:

Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome.

The symptoms of reflex sympathetic dystrophy syndrome typically begin with burning pain, especially in an arm, finger(s), palm of the hand(s), and/or shoulder(s). In some individuals, RSDS may occur in one or both legs or it may be localized to one knee or hip. Frequently, RSDS may be misdiagnosed as a painful nerve injury. The skin over the affected area(s) may become swollen (edema) and inflamed. Affected skin may be extremely sensitive to touch and to hot or cold temperatures (cutaneous hypersensitivity). The affected limb(s) may perspire excessively and be warm to the touch (vasomotor instability). The exact cause of RSDS is not fully understood, although it may be associated with injury to the nerves, trauma, surgery, atherosclerotic cardiovascular disease, infection, or radiation therapy.

But back to what I was thinking about! I remember the exact moment I felt that first excruciating pain. We were on our honeymoon! Our honeymoon was a family affair. Combination dream vacation for our son, and wedding trip/honeymoon. We had planned the trip for a while, it was our son's dream to visit South Dakota and Mt. Rushmore and Crazy Horse monuments. So, we saved up and planned our trip. Mr. Bill surprised me with wanting to get married while on the trip-but that's another story for another time. This story is about living with pain, unending, excruciating, disabling pain...every hour of every day for the rest of my life.So there we are at Mt Rushmore during the first week in August in 2001. Walking up the steps to the entrance of the Mt. Rushmore monument this pain, something I had never felt before, went from my lower back through my hip and down my leg to my knee. It literally stopped me in my tracks. I had to find a place to sit down and catch my breath and wipe my tears. I think back now on that moment and am surprised at what a memorable beginning -at least for me- to a strange and difficult journey.The pain only lasted about 2-3 minutes that first time. It didn't return while we were on the trip, and so I chalked it up to being overweight and out of shape.

We had an amazing incredible trip. The Black Hills are 'take your breath away' beautiful everywhere you look. You can feel the sacredness of the ground you stand on with every step you take.We cherished being able to make that trip. We got home and life goes back to normal after vacation. You go back to work. That first few days is always a chore. Especially when you have been someplace as incredible as the Black Hills. Your mind wants to be back there. So a few days after we got back I was at work, and the pain happened again. Took my breath away, tears coursing down my cheeks. Then it started happening every day, several times a day. This was something I couldn't ignore any longer. I talked to Mr. Bill about it. Told him what was going on with my body, and made my first appointment with my primary care doctor to see if he could tell me what it was and how to fix it.By January, the pain was constant, and I couldn't walk without help. So I spent the next 7 months on crutches, visiting doctor after doctor, trying to find out what was wrong with me. Of course, there was a doctor or two that just told me it was because I was morbidly obese, and if I lost weight it would go away. I had been losing weight, but it is a struggle. I usually walked every day, but since that wasn't an option anymore, losing weight had become really hard. So, that January I had also joined Weight Watchers.

Then there were the doctors who treated me as if I were just imagining things.The doctors that thought I needed to have back surgery, the doctors that put steroid injections into my lower back. NOTHING we tried gave us the answer, and the pain continued, getting worse every day.There is really no way to describe the pain of RSD. There just aren't words in the language to give you a picture of how bad this pain is. Fortunately, after going through a half a dozen doctors, I met my neurologist. Nine years later he is still the doctor that directs my care. I often refer to him as my 'beloved' neurologist. In addition to him I also see a pain management specialist.

My 'beloved' neurologist was the first doctor who told me I wasn't crazy, I wasn't imagining things, there was a name for what ailed me and we could not ever cure it, but we could manage it. That first time I met him,he was performing a nerve test ordered by a different doctor. The doctor that ordered it told my husband and me that it would show that there was nothing physically wrong with me, and then he would refer me to a pain psychologist. When the neurologist came in to perform the test, he asked me questions. He talked to me about  my body's response to the test-I wasn't sure I would live through the pain- and he told me to go home and look up RSD on the internet.

When I had recovered from the test in the next day or two, I did exactly that. Looked up information about RSD. I immediately saw that I had all of the symptoms of this terrible disease, and the information I found was really scary stuff. So, I made an appointment with the neurologist, he studied my test results from all of the previous doctors, and diagnosed me with RSD. He literally changed my life. It had a name, other people were  living with it, and I wasn't just an overweight,middle aged, hysterical female.I had a disorder of my nervous system. There were ways to manage the pain, but I would never, ever again be pain free.

OK, imagine that someone has set your nervous system on fire, is applying a cattle prod and attempting to shred the flesh from your bones with a giant meat fork, all at the same time. I told you it was hard to describe the pain that an RSD patient endures. NOW multiply what you imagine that might feel like by about 10,000.You might be getting an idea of the severity of the pain. Honestly, that is the best picture I can give you. Now imagine that the pain that is constant at about a 6-7 out of 10 can be spiked up to about a 12 out of 10 (I am not exaggerating) simply because the fabric of the skirt you are wearing was touched by a puff of wind. Mr. Bill and I switched the side of the bed so that he wouldn't brush up against my bad leg.The pain colors every moment of your life. The PAIN become almost another member of the family. Can we plan a family outing? Depends on how Mom is feeling.

 Until the summer of 2009 I worked a full time, standing on my feet, walking all over the store job. It was a job that not all healthy people would have had the energy for. I loved my job. I kept working as long as I could. I gave it my all. The morning before Mr. Bill was killed, we discussed that I wasn't going to be able to do it for much longer. We discussed how to achieve my being able to cut back my hours, how to achieve financial stability while I was working less. It was something we were going to talk about and plan for. We never had that opportunity.

Since then, the disease has spread. Originally the pain was localized to the area from my hip to my knee on my right leg. Now, the pain is from my waist down, both legs. Lower back to toes. The pain is managed most days, but there are days that it simply is more than I can handle. When my son and I took our trip last fall I had to schedule a day every two days for resting and recovering. The pain complicates every single aspect of your life. Every breath you take. Am I enjoying a sunset on my deck? What if the wind comes up, what if the fabric in this skirt is scratchy, what if I simply breathe deep and the pain flares? You have to think about these things,and learn to deal with them. It was easier when it was a smaller part of my body. But, it has spread, and you work hard to manage.

So some days are better than others. Some days I just need my cane, some days I need my fancy purple walker, some days it is a good thing I have a wheelchair. It is one of those invisible diseases. I don't look sick, you can't see what I am dealing with. But it is there, unimaginable excruciating pain. Changing the skin, changing the muscles, changing your very existence. You never know what someone else might be going through.

I am sharing my stories so that someone else might be encouraged. You really can learn to mange something as awful as RSD. You can learn to deal with whatever life throws your way.You can thank your God for a good day. You can pray blessings on the cranky guy that yelled at you because he decided you didn't need that close to the door parking place. You can learn to manage the pain with medication, good doctors, and with the meditation and breathing that you use for so many things.

Faith is so important in learning to manage something like this.Some days you might be stuck in poor pitiful me mode, but Most High will not leave you there. Most High will whisper to you that your next blog post should talk about the pain. So Spirit will nudge you to share your stories, share about the pain that is so integral to what is going on in your life.Share that I really do believe I have the choice to pray for healing, the choice to deal with the disease should healing not come. Life is all about choice. I choose faith in my Creator to overcome even the most painful disease known to man. What choices do you have today?

Wednesday, April 27, 2011

Miscellaneous Musings

I am humbled that there are people who follow my blog! I am truly humbled and grateful for each and every person who reads the things that I write. I do mean to post on a more regular basis, when I started this I thought every 2 to 3 days I would be able to write something to post. But, life often gets in the way and wow, 8 days have passed, and I haven't finished anything. I am working on several things, but just can't seem to get one post-worthy!

I want to say thank you to each one who commented on my last post.Thank you to everyone who read it. That post took a lot out of me, but was important for me to write. It was actually cathartic for me, and helped me to be more at ease at the things I am having to do to try to keep my son and I from being homeless.This whole process is exhausting. Physically, emotionally exhausting. Every day the mail carrier brings me something else to fill out, something else I have to find the information for. I told a Social Security employee the other day that I was sorry, I did not plan on this happening, and so I don't have everything, I don't remember some things.No one plans to be in this situation.

I want to say a special thank you to those who hit that paypal donate button. Everyone who shared with me touched my heart. Yes, I am behind on writing all of the thank you notes. I am working on it, please forgive me if you haven't received one yet.

Even while I was writing this my mind was wandering. I think about the craziest things sometimes. I am like the kid in school who is staring out the windows daydreaming. For example, for dinner last night I splashed some fresh strawberries with balsamic vinegar and let them marinate. So just a little bit ago I finished them as a snack, and now I am thinking why does vinegar make strawberries sweeter? Does that make any sense? See, my mind wanders. Have you ever wondered crazy things? Please tell me you have,and I am not the only one!

How hungry was the first person who looked at an artichoke and thought, there is something edible in there?

Oh dear, my mind has wandered again, and I might as well just finish this up. I am so grateful to each of you. We are struggling. But with the prayers and love that we are receiving I am certain that we will get through this challenging time. We are trusting God for provision.

Sending love to all!

Tuesday, April 19, 2011

Feeling Surreal Today

In the last few weeks, I have learned something about myself.  Due to circumstances beyond my control, I am forced to apply for disability benefits and medicaid for my son and myself. I have put it off far too long, and now my financial problems are so drastic because I did. My son and I will in all likelihood lose our home because of my recalcitrant behavior. I find that all of the things I read and see my conservative friends post about 'entitlements' and programs to help the poor now apply to me.

The application process for disability is not easy, in fact I am still working on one of the parts of the application-3 days later. I have already had 3 phone interviews with 3 different people, and there is much more to come.

I have spoken to my therapist in the past about learning to accept the fact that I am no longer able to work. It is so difficult to admit that you are not able to provide for your child and yourself.In our culture we are so often judged and valued by what we do for a living. I was very proud of my job. I gave it 110 percent every day, and I was very good at what I did. So, now, since I no longer have the ability to stand on my feet or use my hands I feel useless. I spend time writing, and trying to figure out what it is I am supposed to do.

The day Mr. Bill was killed, we sat on the deck and had coffee together before I went to work. We discussed our hopes and dreams, plans for the future. We were aware that I would not be able to work at the store forever. So, we talked about me taking courses to do a totally different type of work.We were  so happy that morning, planning a new direction for our life. Then, on his way home from work that night, a drunk driver killed him, and my life has been spiraling out of control ever since. So here I am, no money in the bank, plowing through the paperwork for disability, hoping that there is a way to save our home, and support us through the next part of our life.

Sometimes, I wake in the morning and I am so confused. Who am I? How did I get here? One of my favorite quotes says "Shame on the body for breaking down while the spirit perseveres~John Dryden" So, do I blame my body for breaking down and taking away my ability to work? Do I blame the drunk driver that took my husband from me in the blink of an eye? Do I blame the company I worked for because they terminated me instead of working with me when I became disabled?

I think that I must move forward, accept that my body has broken down. Now I must find a way for my spirit to persevere. Now, I must swallow my pride, and apply for benefits to help support my son and me. Now I must allow the forgiveness that I so often and so easily extend to others to apply to myself.

In this age of social networking and blogging we are privvy to more information about our friends than we used to be. So, now, I can see on my fb newsfeed the religious and political thoughts of hundreds of people every day. I see my conservative friends posting things that lead me to believe that they will look down upon me as I apply for benefits. It hurts to be in this position.

It hurts to do things like adding a paypal button to your blog, hoping that someone might see it and feel led to share. It wasn't that long ago that I was sharing with others. It hurts to feel hopeless and to feel like you are failing in your role as a parent. And so you add these feelings to the other things going on in your spirit, the grief, the pain in your body, the loneliness.  You seek to allow your Higher Power to work in you and through you and for you. Then you blog it and let it go. Surreal, yes, but these days what isn't!

Thursday, April 14, 2011

Autism Awareness Month

It seems as if everywhere you look this month you see another magazine, another facebook page, another organization telling the world that April is Autism Awareness month. From the paint jobs on Nascar race cars, to the shoulders of ball players, to the fb pages of my friends Autism is the cause.

When I first became aware of autism the statistics being touted were that one in ten thousand children would be affected by autism.The research was minimal, and much of it still blamed the condition on bad mothering. When I first became aware of autism, most educators had never heard of it. Most teachers had never met a student with autism, because students with autism weren't in school. When I first became aware of autism, parents were still being told that their children would never speak, would never interact in any meaningful way with other people and would be better off institutionalized.When I first became aware of autism, my son was 18 months old.

I started questioning some of his behaviors with his pediatrician. Those questions would eventually lead us through children's hospitals, university hospitals, as well as clinical classrooms attempted to get a diagnosis. Now, a correct diagnosis when it comes to special needs children is so important. It is the only way to get your child the proper services from the school district. Like other families back then, we went through some wrong diagnosis before we got where we needed to be.

Our pediatrician sent us to a clinic at the local hospital. the very hospital where my came into this world. This hospital diagnosed my son as severely mentally retarded. Now, I may have just been the mom, but I knew this wasn't even close to the truth. So, off I went to the Children's hospital where my son was diagnosed as having a communication disorder, and for 3 pages of the 6 page diagnosis, a bad mom. Interestingly one of the criticisms of the 'experts' at this hospital was that we did not have a TV. It was written that I talked to my child too much. Honest, that's what they wrote. They also wrote that I was unrealistic in my expectations. I expected my son to be able to overcome whatever challenge was thrown at us, and to succeed. How dare I believe in my son!

This diagnosis of a 'communication disorder' was at least good enough to get us a placement in an early intervention program. My son, started school at 3 years old. He has always loved school and learning. We have always been blessed with good teachers who cared about  their students. The preschool program he was placed in had 10 students per classroom. I spent as much time in the classroom as he did. Parents were encouraged to be there and work with the teachers. As I looked around most days, I was the only parent there. I was stunned to learn, in overhearing a conversation between two teachers that in my sons classroom all of the other children were there because of problems created by the mothers drug use during pregnancy. What a sad statistic, having to do as much as where we were living at the time as anything else.

Eventually, I could feel Spirit telling me it was time to move. Raising a special needs child as a single mom was going to be easier in the Midwest.So, we moved. The first house we lived in was in a school district that chose to not deal with my sons challenges. By this time i was certain that my son was autistic, and I let school district administrators know this. A parent attempting to educate and autistic child was a new thing, and it took me a while to find the right school district. Eventually we did, and we moved again. My son registered in kindergarten, I took him to the local hospitals, and finally we had a diagnosis of autism.It took four years of doctors and educators to diagnose my son. Autism at that time was a relatively unknown disorder.

My son was blessed. We ended up living in an excellent school district that provided excellent programs and teachers for him. We are aware that other parents are still fighting long and hard for their children. Our journey through school was challenging, but in our school district he was able to thrive. My son was the first autistic student in the district. He would soon be followed by more autistic students as statistics changed. When i was taking my son from hospital to hospital-six in all-the statistics were one in ten thousand. Fast forward 20 years, it is April. Autism Awareness Month. Hard to believe that we have come this far in such a short time. Hard to believe that the statistics now say one in one hundred and ten children will be affected by an autism disorder.

When I first became aware of autism it was considered a rare disorder, now it is so common that it has a Month to raise people's awareness.Look around you, I bet you know a family that is being challenged by autism. In your schools, in your churches, in your neighborhoods. This month, be aware, when you see the blue lights lighting up a neighbors house, ask, they will be glad to talk to you about autism. When you are surfing the internet and you see the blue puzzle pieces in a logo, stop and take a minute to read the article.

Autism has always been around, all we ask is that you take a few minutes to become aware. Afterall, isn't that what awareness months are all about?

Sunday, April 10, 2011

Walking in Faith

Mr. Bill and I were engaged for 4 years. It took us one month to meet, fall in love, and promise to spend the rest of our lives together and 4 years for us to work through the issues that needed to be worked through before we made it to the altar. Well, if a table in a coffee shop in a county courthouse can be called an altar.

Now, it would be lovely if I could say that all of the issues were his, and that I was issue free. It would be lovely, but it would be untrue, and the truth is important to me!! Mr. Bill had what we referred to as the practice wives. 3 of them. I was the 4th Mrs. Bill! Mr. Bill was the first and ONLY Mr. Esther! We were in our late 40's when we met, so we had a  lot of miles between us, relationship wise, and those miles came with lots of baggage.Baggage that had to be opened and looked at and sorted through, with the detritus left behind us.

One of the things that is most surprising to me now, is the issue of independence. I was a very independent woman when we met. I had to learn to allow someone else take care of things. I had to learn that I could depend on someone. One of my major issues is that I do not ask for help. I have never been able to ask for help. I learned in my childhood that asking for help was unwise, and that there was no one I could depend on to help me. So, I grew up knowing that people were not to be depended on, not to be trusted. By the time I met my husband I was pretty much set in my ways.

So, Mr. Bill crossed the street, and we spent the next 11 plus years learning from and with each other. I learned to trust and depend on another human being. I learned that it was OK to allow someone to know me better than I knew myself. I learned to love and to be loved.

But, I am still learning to ask for help. I always think, right up to the last minute that I will come up with a solution. So, I put off asking for help until it's too late. I just know that God has a plan, and that I will hear from my Creator, telling me how to fix it. It has always worked that way.

I have always been blessed in my life. Even when times were tough, God has always provided for us. When my son was small, it seemed that we had miracle after miracle. I love to tell the stories of God's provision.

One of my favorite stories is the one we call "The toilet tissue story" We were down to our very last roll of toilet tissue. Now that seems like a really small worry in the grand scheme of things, but to a single mom raising a special needs child, sometimes its the small things that matter. We put the last roll of toilet tissue on the holder, and I knew that I did not have the money to buy a package of toilet tissue. I would  not have the money until the first of the month, and it was the 20th. 11 days from payday. So, as I placed that last roll of toilet tissue on the holder I just gave the problem to God. Every day for 11 days, I looked at that roll of toilet tissue, and every day for 11 days, that roll of toilet tissue appeared to remain the same size. Now I know that was not possible. I knew it wasn't possible while it was happening, but it never grew smaller. Until payday, when it seemed to go from full roll to empty roll in a matter of moments. I have shared our toilet tissue miracle many,many times over the years, and people look at me funny every time I share it. All, I know is that to this single mom, that roll of toilet tissue represented God's provision in an amazing way.

Another of my favorite stories from that time in our lives is the story of the Christmas Cards. As Christmas got closer and closer, I did not have the money to purchase gifts for my son. So, once again, I gave it up to God. The other moms at the bus stop would ask and I would tell them I was waiting for God to provide.Sometimes it is hard for people to understand that. When you choose to walk in faith, it often looks unrealistic to those around you. As the days of December counted down, I knew that they thought I was crazy. But, I just kept telling them that I was not worried, God would provide for my son to get what he had asked for.

 On December 23,  I walked to the bus stop to meet my son. It was December 23rd, and I still did not know how, but I knew that God would provide.On my way to the bus stop, I picked up my mail. There were 6 envelopes in the mail box that day. I carried them with to the bus stop at the end of the street, and as the other moms and I waited for the bus to come, I opened my mail. I opened a card without a return address, and in the card was $70 dollars in cash. The card was signed, A Friend. That was all. The other moms and I were so excited, as I showed them the card, and reminded them that I knew God would provide. Then I opened the next card, in the card was $70 dollars in cash. That card was signed simply With Love. I shook as I opened the last card. In the card $70 dollars in cash, signed Santa. Of course, I was crying tears of joy, and tears of amazement, as I was able to share with the other moms God's amazing provision.

So, here we are again, waiting for God to provide. I have had to overcome my issue of not being able to ask for help, a lesson that Creator has been trying to teach me for years. Mr. Bill tried to help me learn it, but he was killed before I got it. So, I am still working it out.

They turned off our gas yesterday, so we do not have hot water or heat right now. But the choice was between the gas bill and medication for my son, and to me the choice was obvious. I am a single mom again, a widow with a special needs child. My child is no longer small, but he is still my child, and we are still waiting on God's provision. Faith is a choice, not always an easy choice, but a choice nonetheless.  So, all that's left is for me to watch and see how long the roll of toilet tissue lasts this time, because I know that in God's time our needs will be met.

I'll let you know how it turns out!

Friday, April 8, 2011


My son suggests that my 'Post Menopausal Memory Loss' is also my exercise program. He may be right,  just a couple of mornings ago I looked for my coffee cup in every room in the house, including the was sitting next to the coffee pot!

Just today, I went to the basement to start a load of laundry.I turned on the washer, added the soap, and shut the lid. The basket with laundry in it was still in my bedroom. I make many more trips up and down the basement steps, or from room to room than I used to. I get up from my desk, walk into the kitchen with determination, only to end up going back to my desk determined to remember what it was I wanted.

So this morning I am thankful for memory loss. In all things give thanks! All things work for good. Since my mobility is becoming more and more limited, I am thankful for the extra steps I am able to take while looking for...what was it I am looking for?

I talk to myself more these days. I think it also has to do with my memory loss. If as I am walking from my desk to the kitchen I say out loud "I am going to get a cup of coffee" then when I get tot he kitchen and can't remember what I came in here for, if William is in the room I can ask him, since he would have heard me talking to myself. Am I losing you, because it makes perfect sense to me!!

So this morning I am thankful that I am in the habit of talking to myself out loud.

Well, except I woke up yesterday morning with laryngitis. It is something that happens to me every year for a few days, like the first robin, my allergies are a harbinger of spring. But, I am going to say Thank you, Most High, for truly this means that Spring is here. Today, I give thanks for being unable to speak above a whisper.

Sometimes when we are surrounded by problems, we forget to be thankful. I know I do. I get all stressed out, wrapped up in worry. Problems don't get solved by worrying. I know that, you know that, and yet most of us worry when we are faced with problems. I have been blessed with adversity all of my life. Literally since before I was born, and still this is one of  the spiritual truths my Creator has to teach me over and over again. Fortunately my Higher Power has an amazing amount of patience.

And for that, I am truly thankful!!


Sunday, April 3, 2011

Where were you at 22?

My husband was killed by a drunk driver.

Quick, what picture did your mind flash when you read the words 'drunk driver'?

In our case the words 'drunk driver' mean a 22 year old girl. A lovely young woman with her entire life before her. Recently graduated from college, with honors. From all reports, she was a goal oriented, studious college student.She is very close to her family, she goes to church on Sunday. After her May graduation she went to work, as an accountant and moved into her own apartment.

After she got off work Friday night, she reportedly went out with some friends. Young people, enjoying themselves on a Friday night. Laughing, talking, drinking. Then she got into her car to drive home. Her blood alcohol level was around .118, well over the legal limit. In her intoxicated state she drove up a freeway off ramp, past the signs that said WRONG WAY and drove northbound in the southbound lanes for a couple of miles at freeway speeds until she hit my husband's car head on, killing him instantly I am told.

This is on my mind because my friends and I have children in this age group. Children that are stretching their wings. I remember reading somewhere about how a butterfly struggles to exit the cocoon. If we were to help the butterfly, the butterfly would not be able to fly and would die. It seems that the struggle to break free creates the strength necessary to fly. Those of us with growing children know the truth in this. We watch as our children struggle with the silken constraints, and we want so much to help them, but the most we can do is hope that we have taught them right from wrong, and that life is always about choice, and every choice has consequences. We watch our children stretch their wings, and hope they know that there is nothing they can do that will make us stop loving them. We hope they know that when we see them struggle, we will do our best to make sure they learn how to fly.

My husband and I were always very open with our son about our youthful struggles with drugs and alcohol. We felt that since genetics may play a role in addiction, we had a responsibility to tell him our stories. He knows about our 12 step programs, and why we attend. He knows that we celebrate 2 birthdays a year. In fact, he has been quite proud of our milestones over the years. He will tell you that we choose not to use alcohol at our house. He will tell you that we choose not to use illegal drugs at our house. He will tell you these things with pride in his voice, because he knows that in life there is always a choice, and every choice has consequences.

Being a parent is a hard job. We watch our children stretch their wings with such pride and fear. What if we see them struggling, when do we help, how do we help. Have we talked to them about the embarrassing stuff? Kids will groan when the subject turns to sex, drugs, alcohol. They will roll their eyes, but we must tell them anyway.

Do your children know your stories? Do they know that you were their age once, and that you made choices and lived with the consequences of those choices. Sometimes the consequences are benign. You are 22 years old and you choose to celebrate the end of the work week by going out with friends and laughing and talking and having a good time. Since you are choosing to have a drink, you have chosen whose turn it is to be the designated driver.

Sometimes the consequences are tragic, and you have too much too drink and you choose to drive drunk, and you drive up the off ramp past the WRONG WAY signs and you kill a man, and nothing is ever the same again.

Friday, April 1, 2011


I think the first time I realized what a challenge my son was going to be was the day(2 years old) we took him down off the roof...then there was the day he went shopping(4 years old), moving a 250 pound sofa sleeper, unlocking 3 locks to get out the front door. Running down the street, entering the grocery store , grabbing a cart, and methodically heading up and down the aisles choosing items. The shopkeepers recognized him, we were regular shoppers in our neighborhood grocery store.The manager said they  assumed I would soon follow, so they let him shop.That was the day I put bells on the door.

Or was it the day when he was 5 years old and he slipped out--he had an uncanny knack for taking advantage of my bladder--of my auntie's front door, ran down to the intersection of a one lane street and a 4 lane thoroughfare. STOPPED traffic with his hand upraised, crossed the thoroughfare, and calmly entered the convenience store,where kind people called the police,and bought him an ice cream while waiting for the police and mom to show up! The police and I got there about the same time.

Perhaps it was the day in third grade when they called to inform me that my son had hacked into the school computer system and locked everyone else out! They wanted me to help convince him to tell the IT guys what he had done. When I asked him to tell the IT guy what he did he responded "He is the computer guy he should be able to tell." I said "Well, he can't, you have to tell him." Then I heard a sigh and a few keystrokes and my son said,"There I changed it back." We discovered that he had stolen his teachers password, not by watching, but by hearing her type it in. He could tell the sound each key  made. So, William had to go into the hall with the classroom door closed whenever his teacher wanted to log in.

He has kept me on my toes through the years, and it is evident to all who meet him that he is a unique individual. The most amazing person I have ever met.This week we met a new challenge, illness. He has been a very healthy young man. All of his life. So, when he let me know last Sunday that he was in pain, I knew it was serious.The pain was in his lower right abdomen, so of course, the immediate thought is appendix. When we finally got to see a doctor in the Emergency Room, that was her first thought too. So, off we went for a CAT scan.Fortunately I am not squeamish, so I was able to be with him through all of his procedures.

I felt like a really bad Mom, because as we answered questions, it turns out the pain had started several days prior to my finding out. I had been questioning him, since it was evident he wasn't feeling well. But, I didn't ask just the right question until Sunday. So, we wait, all day Monday, in the ER. The CAT scan comes back, and the first diagnosis is possible ruptured appendix. That scared the hell out of me, but I couldn't let him know. He was already stressing out, and shutting down. Autism at it best. In order to deal with pain,  he could just retreat into his world, where it doesn't exist. But, in order to help the doctors and nurses find out what is causing the pain he has to be able to communicate with them. Now, we need the translating skills of Mom.

As we are admitted to the hospital, he is using all of his coping skills, and doing an amazing job. Then, during the day it happens. The nurse is not having much luck finding a vein for the blood draw. She is hurting him. He does not cry out, does not yell-all things I do when I am getting my blood drawn. He closes his eyes, grits his teeth, and reaches out and grabs my hand.

The surgeons come, they poke and prod and then leave to read the CAT scan. Miraculously they find a healthy appendix. But right next to it is a large abscess. It must be removed, but how? Fortunately a wise surgeon decides that surgery is out of the question. We do not know yet what type of infection is contained in the abscess, so we go off to the ultrasound department. The doctor is going to attempt to draw out some fluid from the abscess to culture. He looks at the image on the screen, even I can understand what the image shows. He changes needles, and he decides that he can totally drain the abscess. Everything is explained to us, I explain to my son,  the doctor uses a local anesthetic,and once again my son reaches out for my hand and I watch through tears as the abscess disappears, its contents in several large syringes.

 I can not remember the last time my son allowed  me to hold his hand, and here he is holding on to mine. At this moment in time, all of my grief, all of my fears, all of my stress do not exist. There is only my son holding my hand, and me thanking my Creator for choosing me to raise this child.

At my  infant sons christening I asked Most High to help me make sure that my son would experience the magic of childhood. The answer was the gift of autism. The most amazing blend of special needs, genius, and faith that is my son. My son believes that God will always provide, and that whenever we meet a challenge, Mom can find the answer. My son trusts me to help him learn to navigate a world he has trouble understanding. It seems miraculous to me that he is holding my hand. I will never forget the feeling of his hand in mine. I am humbled by his trust and faith in me, humbled by God trusting me to raise this special child. I am overwhelmed by emotion. I am truly Blessed.