A Breakdown, A Snowstorm, But Still Fighting

This post originally appeared as a Facebook Note. But it rightfully belongs here as the most recent events in the Unique Family. This begins a new chapter in our lives; dealing with mental health issues as they relate to chronic illness and stress. This is part of many families, and I want to be part of enabling discussion and encouragement. This is only one part of how mental health plays a role in our family. In the future, I will also discuss my sister and my husband. It is important to advocate for our loved ones. Thank you for reading.

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Perhaps I shouldn't write when I am tired, but the house is finally quiet at 1am, and this used to be the time that I could punch out a 2500 word paper, so I figured it is as good a time as any.

The last two days in the Unique Family house have been a roller-coaster. For some reason, I hesitate to put this down, but will push ahead. Not because I like sharing the details of my home, but I have found out that by sharing, I help and encourage others. So here goes.

My youngest son had a nervous attack. A nervous breakdown. I hesitate to call it a full breakdown, because he is recovering quickly, but I don't know if that is because it lacked severity or if his memory issues are kicking in and he is forgetting the whole incident. Here are the details.

Sometime Sunday night, my son began to yell, cry and scream, saying the same fragment of a phrase over and over again. "I'm sorry!" Writhing on his bed, he alarmed my oldest son enough to come and wake me up. In his usual autistic non-emotional fashion, my oldest son said, "Mom, wake up. Russell is having a breakdown."

Thinking it was a dysautonomic event, I rushed to his room, but heard the noise before I even got to the closed door. Upon opening the door, there was a picture I will not soon forget. It was a person in torment. Over and over again, he cried, "Make them stop. I don't want to hear them anymore. Make them stop. I'm sorry!" Thus began an incident that ended with us sitting in a Mental Health Emergency Room in the middle of a snowstorm.

It is so hard to talk about this. No one wants to talk about mental health issues. In light of the recent shooting, I am becoming more adamant that parents, friends, acquaintances, school officials, etc. have the resources they need to help an individual dealing with any mental aberration. Don't think I am saying this to capitalize on the recent events. I am saying this because how many people know where to go if their child is having an event? How many people know what to do if their friend begins to worry and scare them? How many people feel as helpless as I did Sunday night?

That night, I fell asleep in a chair, listening until I could hear him deeply sleeping. That was around 1am and after rocking with him for 3 hours. I was up again by 4:30am to listen for the school closings. And, by 10am, we were sitting in a Behavioral Health ER. The voices were quieter, but still there. Already his memory was slipping away and he was confused over the events of the night before.

Hours and hours later, the good news was that this was not considered a psychotic event. Because he could specify what he believes led to the crisis (the pressure he was feeling about school, church volunteer service and home life), because he maintained the ability to be lucid and based in reality, it was attributed to the stress in his life, and we were advised to seek therapeutic counseling to help him learn more coping and behavior modification skills, especially in light of his memory issues. The line that I distinctly remember is that my son could be compared to a brain injured person, and therefore, would need constant repetition and therapy to help him deal with the world, his condition and the stress.

Once again, I was told that I would have to be a strong advocate for him. I just chuckled. Please believe me when I say I am not being flippant.

Can I tell you the truth? I am tired. I have searched for doctors, therapists, specialists that could tell me what happened to my child. How did I lose my honor student, my athlete? Why has he been compared to an early Alzheimer's patient and a person with traumatic brain injury, and yet, I have no diagnosis, no treatment plan, no options for care?

And, now, to have to watch my son have a mental episode due to the stress of dealing with his life, a life that does not even include full-time school is almost too hard to bear. This is his second mental episode where he briefly wandered away from his senses, and asked me pitifully, "Mom, what is to become of me?" I sit here with the broken heart of a mother who longs to fix things for her son. Longs to kiss it and make it better. Longs to sleep.

But, that is not the road I was given to walk.

Today, I will be on the phone, calling his primary doctor, looking for a therapist, and trying, again, to put together a treatment plan to help him cope with his loss. He is 14, and has experienced more loss than I can imagine. Once again, I will fall on my knees and ask God for strength to sleep only a couple of hours and work all day and search the Internet at night for answers. Once again, I will search everywhere, asks friends and other advocates for suggestions, and reach down deep for the determination to keep fighting for my son.

I am tired. Driving Monday afternoon on the roads of Charlotte, I pushed to get home before the darkness robbed me of the ability to see the roads. I jumped out once to scrape away the ice and drove more by memory and GPS than clear vision. We almost had an accident when the brakes locked up and I slid out into an intersection, narrowly missing a car as I honked the horn to warn the driver, and maneuvered my minivan into a wide arc of a left turn. I now thank God profusely for that year of living near the Catskill Mountains and driving during 13 snowstorms. With the neighbors pushing, I parked the faithful car in the driveway, and began to thaw out my stinging fingers, too weary to even cook dinner.

But, the fight has to continue. Our children and our fellow adults need our help. Mental health conditions, traumatic and acquired brain injury and its aftermath continue to rob us of our present and our future. They continue to create human beings who cry out for help and need all the available resources that we can find.

If you take away anything from my note, please take this. Many families are dealing with mental health conditions in one form or another. Please don't hide if this is happening in your family. Don't consider it a shameful thing to be discussed in hushed tones and innuendo. We have to begin to find real solutions to help our children and fellow adults. And, that cannot happen without people who are brave enough to ask for help, push for more research and funding, and demand that something be done.

In my mind, I see another mother who has come to the end of her rope with her child. She doesn't know how to help him as he worsens. She doesn't know if she has a facility like the one I went to near her. This note is for you. You know who you are. I am still fighting. I'm tired, but still fighting for your son and mine.

New Year - Back to Blogging

Here I am.

It has been almost a year since I have written anything about the Unique Family. I haven't even looked back to see what I wrote before. The year has been filled with transition and many changes.

There is a lot to catch up on over this last year and I will attempt to bring everyone up to date in some future posts. But, the urge to write about recent events supersedes the regular order of playing catch-up. Dealing with a new area of concern for the youngest member of the Unique Family shall take precedence. The next two posts were actually written earlier today, and will be posted because of their importance in my life and my life's work.

I will say this much as I return to blogging about the events in the Unique Family. I will continue to write as led by my heart. Some days may be light and airy, dealing with the simple pleasures of our new home in Charlotte, North Carolina. Other days I may focus on the frustrations of dealing with a sluggish vocational rehabilitation system here in the South. I may also talk about spiritual matters as I see through the lens of a Christian woman in the United States.

Whatever I do post here will be heartfelt and genuine. More than most, I never mean to offend. I truly want to be able to reach the heart of all readers. With this in mind, I encourage comments and debate, but with civility and respect.

Okay, transition over. Let's get down to business. I'm back and i hope you will stick around.

As always, take care.

Judi

The Road Less Traveled a.k.a. There are Weeds Here

Today is Saturday, February 20th, 2010. I want to mark that day because it is today that I decided to throw out all conventions of motherhood toward teenagers.

You see, I have two of them (one 13, rapidly approaching impossible, and another 17, who already shows the blithe unconcern of a 19 year old - such a prodigy!) But, while that sounds completely normal, the truth of the matter is that both of my lovely boys will be with me for some time...so I better get used to them.

The oldest, though showing rapids signs of the 20-something self-centeredness, has autism, and at any moment, well, at regular moments throughout the day, gets the whole world wrong. I don't mean he says something cute and autistically-eclectic. I mean, he doesn't get whole concepts, like the idea of weekly shopping and the four food groups. Now, mind you, he is trying. We started him recently with a student Paypal account. He has his little credit/debit card, and the world smells like microwaved Hot Pockets. But, we are working on the concept that the Quickie-Mart is not a great place to shop long-term and that he, too, can purchase vegetables.

Some mothers may think, "huh, is that all you have to worry about?" Yes and no. I realize many of my other Mom friends with autistic children have MUCH BIGGER issues at hand. But, I am talking about the hand I was dealt, and I struggle with the idea that his only favorite food for going on 15 years is pizza.



But, in the spirit of "I have got to make this better or I will explode," we have decided to supplement his "diet" with a huge, horse-pill vitamin/mineral/every-other-thing-you-are-supposed-to-be-eating supplement.

I am out for some peace in 2010, and watching a 6'2', 114lb boy eat yet another pizza pocket (because he had money, now!) is not going to destroy me. I am trying my best to keep his arteries clear and his blood sugar levels stable. Good thing, my dear son has a fear of being sick, so random Yahoo! news announcements of the latest food study help a great deal.

Now, my youngest son is not quite so easy or humorous.

We are faced with the prospect that the only way to teach him may be through special education, homeschooled over many, many years. Now, again, some of my readers may mutter, "Big deal, we have been there since day one!" I have not.

My youngest was nearly skipped from pre-school into first grade. He rapidly took on more advance work (twice he was put in advanced math) until the age of 7-8. From there on, we saw the steady decline in memory (retention and recall), comprehension, speech and language skills, and so many other abilities, I need a school specialist to explain them.

What happened? I do not know. Somewhere along the line (hindsight being 20/20), my son is more comparable to a mild Alzheimer's patient with a Traumatic Brain Injury (TBI) than just a struggling, slow learner. I just order several resources from Amazon.com and Lash & Associates Publishing. It is my own little resource section as we attempt to tackle high school with no IEP, only a very weak 504, and the possibility of home-schooling due to him being too fatigued to go through even a moderated schedule.

From what I can piece together is that since the viral attack at 2, and what everyone thought was a seizure at 3, my son has been set up for this decline. Undiagnosed moderate sleep apnea, dysautonomia, Chronic Fatigue Syndrome and a couple of good hits to the head (first one at six years old) and we have my youngest son; home-bound and needing 24-hour support. Not the support of someone wheelchair bound, but support nonetheless. There has to be a schedule for eating, sleeping, taking medicine, bathing and every other daily task. Without it, he can become a smelly, disheveled teen with bad breath and bags under his eyes.

According to one neuropsychologist, my son has no short-term memory. He lives in a world of moments. And, those moments are not easily recalled, even after being experienced.

Any of you familiar with dysautonomia understand the crushing fatigue, the stomach issues, the lightheaded feelings, the fog. We also have two sleep disorders, sleep apnea and one I call Broken Circadian Clock Syndrome, major memory deficits and a persistent inability to see the whole picture. I know that doesn't sound medical, but until I get a better term, I am stuck with always picturing the blind men, touching an elephant and declaring it to be something completely wrong. Imagine that in English, Science, World History and Math. Imagine a brain that does not process analogy or comparison. Imagine only have memories once in a bluish moon. The rest of the time, you live in an angry attempt to make sense of a world of which you are no longer a productive part.Imagine a brain where all of what I just talked about will be beyond recall two weeks from now.

That is my youngest son.

No one has ever answered my question. How do you teach a child who cannot remember? Is it really learning, if the concepts are gone in two weeks? The ability to master is there, but without the ability to recall, we are stuck in a loop of constant relearning. It turns ESY (Extended School Year) programs into (LL) Lifetime Learning programs.

But, remember, this is the year I make it easier; on him and my poor, constantly-grieving heart.

Starting in the summer, we, he and I, will embark on the most different kind of home-schooling program I can afford. Videos, movies, animations, trips and audio will replace 100% of the books. I know that sounds radical, but that is what works, and as a disability awareness guide (my own term, thank you!), I am out for what works. Not another frustrating year. We know that his procedural memory is relatively strong, so he must do things with whole body, over and over again. I welcome any suggestions from the home-schooling online community. This is uncharted territory for us. I am flying blind (no pun intended) here, but I intend to finish with a child who has some purpose in the world, even as someone has to remind him to comb his hair and brush his teeth.

So, today, all well-meaning friends who have children who are doing well, please understand if I don't share a lot. I am on a different road. One not everyone can handle and master. And, I intend to do both. Brilliantly.

We Are One People

A friend of mine today was worried and sad. She had to go through a physical exam and a mental illness exam. She was so afraid that she would be labeled "mentally ill." Once she wrote this, I began to realize that she was reacting to a quiet discrimination leveled at people who suffer with mental challenges.

How many people hide their co-morbid emotional and mental challenges as they deal with more visible physical challenges? How many people don't seek out care and support because they need a physician of the mind?

Part of the disability movement that I am so excited about is the attack against accepting the labels, the pity, and prejudice leveled at persons with disabilities. Here was a person dealing with fatigue, skeletal issues, governmental programs for the poor and she was afraid to be labeled "mentally ill."

It is my hope that the community of persons with disability will continue to break down barriers, especially the ones that exist within our own ranks.

Below is a portion of my reply to my friend. Her user-name has been changed to protect her privacy.

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I just want to say a word or two about mental illness. Please bear with me.

Many people are discriminated against in our "health care" system because they need physicians of the mind. It is okay to miss a whole limb, but don't be anxious or depressed. There is a stigma attached to mental needs that I am making part of my mission to attack. My husband has depression, general anxiety and dissociative identity disorder. He suffers with mood swings (for which he takes medicine) and with his epilepsy, may deal with mild short-term memory loss. He lives in mortal fear that someone will discover all this and fire him or not want to be friends with the family. His own family verbally abuses him by calling him names (coo-coo, nuts, idiot, etc.) He lived a miserable life until I came along. We are not perfect, but I love him and have tried to help him in every way I can.

There is no shame in needing mental health support while you try to build up your physical health. I credit the short-term support I received in giving me the mind-set I have now. Don't allow anyone to judge who Blakely is by what mentally or physically challenges you.

You are a wonderful soul, and need support. Period.

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This goes for everyone. We are all wonderful souls. We need support, whether we have a physical, mental or invisible disability. We are one people and cap(able).

Lemons, Lemonade or Someting Else?

Lately, I have been listening to many motivational speakers and coaches. As part of my goal to begin public speaking in 2010, it is important to get to know who is in the industry and what people are saying and how they are saying it. Part of my nature is to observe, take notes and draw conclusions based on my own experience. For the most part, I love what I hear!

There are so many great people out there, making it their mission to help others. It is uplifting, encouraging and yes, motivating.

Throughout my audio online visits, I kept hearing a certain phrase over and over,


“When life hands you lemons, make lemonade.”


I personally don’t like that phrase. Why?

Because, it is so limiting.

As human beings, we have the potential to create so many things with our lives. Our minds are capable of creating ideas that eventually turn into products, companies, movements; forces beyond what the original thought intended. When I hear that phrase, I envision people squeezing the difficult parts of their lives into a container, adding sweeteners, and then, trying to enjoy the finished product. Somehow, that is not appetizing. Nor do I think it is practical.

I decided to do some research on the lowly lemon. What I found blew my mind away!

That one fruit is part of our lives in so many ways, most of us are not even aware of it.

Lemons:

• make furniture polish


• strengthen our immune systems


• purify our blood


• stop bleeding from a cut


• aid our digestion


• create cosmetics and skin products


• flavor foods


• kill bacteria


• keep other foods from spoiling


• Lemons are non-toxic to children, pets and the environment


• The scent of lemons is invigorating and refreshing

So, how did this wonder plant get the negative connotation of being attached to a bad or broken thing? How did such a plant with so much potential become synonymous with adversity, loss and failure? Maybe some scholar would like to chime in with a comment, but the source I read believed it began as a metaphor arising from its bitter taste.

I can see it. Something that tastes this bad CAN’T be any good! It is obviously not a good thing? Or can it be? We see from it uses that lemons are good, even though they taste sour. So what do I take away from this?

Here is my thought for you today.

Take a look at those sour, bitter experiences in your life. Examine those failures, losses and adversities. Perhaps, they can create so much more than just lemonade. Perhaps they can purify your intentions. Perhaps, they can clean away the bacteria of doubt and denial. Perhaps, they can freshen up the recesses of your mind with a clean, non-toxic attitude. Or keep some part of you from spoiling in decay. Maybe there is more that adversity can do than make a sweet drink that you will try to swallow.

So, do you still want to just make lemonade? I don’t.

I don't claim to know how or why we are given the losses in our lives. I don't claim to like the bitter taste of adversity. But, the next time you feel you have been given a lemon in your life, don’t just mix a drink.

Plant the seeds and grow lemon trees. Sell the fruit to companies, the juice to chefs and the skins for furniture oil. Clean your house. Color your hair.

Find out how those lemons in your life can become so much more than what they seem.



References:
Lemons are Not Just for Lemonade: 31 Uses for Lemons and Lemon Juice
http://gomestic.com/homemaking/lemons-are-not-just-for-lemonade-31-uses-for-lemons-and-lemon-juice/

Online Etymology Dictionary
http://www.etymonline.com/index.php?search=lemon&searchmode=none

This Seems Appropriate

It seemed appropriate to update this blog at the end of the year.

So many of you Twittered, FB'd, emailed, wondering where I was and what happened to the Unique Family. When I look at the post list, I see I have not posted anything since July 25th. Looking back, maybe that was a pivotal month. At the time, it seemed anything but pivotal. It just seemed like the madness would continue until it destroyed us all.

But, I don't give up quite so easily.

So, today seemed appropriate to bring everyone up to date. Time to let everyone in on the last six months. Perhaps some might think that a blow by blow description would have been better. I tend to think otherwise. I think that hindsight is 20/20, and a mind in reflection can tell a story better than while it is going through it.

Today, is the end of a magnificent year. If you would have asked me a couple of months or even weeks ago, I would not have said that. I would have said that this year ranks up there right after the year both my parents died. I would have bemoaned this year as a catastrophe on so many levels; financial, emotional, marital. But in hindsight, I believe this was a year that confirmed the kind of person I am. Unabashedly, I am a giver, a nurturer, and a strong, powerful woman. I am smart, creative and funny. No shame or humility in these statements. You see, at some point in our lives, we should be able to look in the mirror and say, "Yes, this is who I am, and I like it." If you are still not able to do that, make 2010 the year you begin. I reached that point in 2009. This is how it happened for me.



If some of you are reading this for the first time, you may not know that I have several family members that need a lot of care. Some are more functional that others, but all of the Unique Family struggles to get through day to day life in some way or another. Whether it is autism, depression, chronic debilitating illnesses or mental illness, their struggle takes someone other than themselves to see that all is well. I am that someone.

Up until this year, I shrank from that role. Well, for my children, I accepted the role of mother and caregiver, but for my husband and my sister, I rejected the needs and demands. I wanted to be so much more than just here everyday, providing a backdrop for other people to exist. I remember even asking a therapist (my husband's) about how I could live the life I wanted and still take care of the people I loved. She had no answer at the time. Funny, how those kinds of answers can only come from inside yourself.


Most of the year, I continued to shrink from the responsibilities, the needs, the demands. Why couldn't these people take care of themselves? Why did I have to be the leader? When do I get to enjoy my life, the things, people and places I liked? These were the kinds of questions in my mind (and the reason I didn't write here for nearly six months). Waffling between outrage and compassion, I tried to find a middle ground that would satisfy my predicament. Only this last couple of weeks have I realized that it is not middle ground I need, but higher.

Let me explain. When I have to do something difficult, my first reaction is to find a fix; something that will make it better. Remember, I am a nurturer. I want it all to just "work out." But, this time, when the light bulb finally went off, it was not to do something easy or put a band-aid on it. The answer was to rearrange my entire life, take on new, more difficult roles, and approach life in a way that is totally foreign to me. I had to step into the role of leader.

Yes, I am a reluctant leader. I am a person who really likes the side-lines. I am a INFJ; introvert extraordinaire. I like to be the wind under other people's wings. I avoid the limelight. And, yet, 2010 brings me to the realization that a leader is inside of me, and unless, I stop fighting myself, I will destroy not only myself, but the ones given to me in this lifetime.



By now, I am sure you are wondering, what does that mean for the Unique Family?

In 2010, the following will happen:

1. I will relocate myself and my two children to Charlotte, NC.
2. I will not live with my husband anymore.
3. I will become a landlady, renting to my sister and a mutual friend and her two children.
4. I will relaunch my old company, An Extra Hand Services (AEH Services) providing office/project/event management to start-ups, sales and other entrepreneurial-minded individuals-both online and off.
5. I will become a partner in an event management company, called Pristine Events of North Carolina.
6. I will begin to speak publicly about my journey to leadership through the particular hardships I have been through: disability, single-parenting, dealing with mental illness and depression of close family members, including my husband and sister.
7. I will work on my Bachelor's program in Small Business Management and Entrepreneurship with a Leadership elective track.
8. I will continue to work with two direct marketing items that I believe in and love.
9. I will not rely on the government beyond my own disability income with the goal to one day tell them I don't need it.

These are all of the issues that were worked out in the last six months. Maybe it would have been a better story to have written every twist and turn, but frankly, it was too hard to write in the midst of it. There were wonderful highs, like the day my diploma arrived for my Associate's degree. Or, the day my oldest son came home with six straight As, and made the Honor Roll for the first and only time in his seventeen years. But, there were also many lows, like the day I told my husband that he needed to live on his own for his own sake and mine. The day I realized that my youngest son may only get a GED, and that is a very light maybe. The day my sister moved back in with me, and let me know that if I sold my home, she would return to the homeless system. The day we refinanced the house for the second time in three years, and still could not afford anything for the holidays. The two weeks with only $50.00 for food for five people. The weeks I washed 2-3 times a day because I couldn't afford deodorant. The month without heat. Standing in line at the pantry after getting yet another A in school. The constant dichotomy of sanity and mental instability, strength surrounded by profound weakness, love and loathing felt in the same day, hour, minute.

The mental and emotional anguish was not something I could put into words at the time. The memories now are hard to write about.

But, I want to leave you with this. The other day at the pantry, I picked up the Laura Day book, Welcome to Your Crisis. I brought it home, because I knew I was definitely in one. I went in looking for answers...and quickly became bored. Not that her work is not fantastic. It is a phenomenal book. The problem was within myself. Deep from within, a voice continued to hammer away at me. "You don't need this," it said. "You know what to do already. Why are you trying to find answers to questions you have answered long ago. Get up and do what you are supposed to do. NO MORE EXCUSES!!"

So, here I am; writing again. Hoping those of you who read my blog understand the reasons for the silence. This will not turn into some sticky, motivational platform. It will continue to be one woman's journey in this world. I just accept the road I must travel now. I hope you will continue to enjoy where I go and how I get there. I am happy for the company along the way. For it is the process that is to be enjoyed, not the destination. :)

Take care.

Spontaneous Recall and Then It's Gone

I found this post written back in July. It was the beginning of a time of introspection. I went away for awhile because I had to make some hard decisions, and in the end, only the person and their God can help them move in the place they need to be. Read this and understand.

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I am sure there is a more medical, scientific name for what happened in our house last night, but all I can call it is spontaneous recall.

It was an ordinary evening. Dinner was done, the kids were in the living room watching television. I was at the computer, trying to download all the research for a paper due Sunday. I had just reminded my son to go take his shower. If you are not familiar with my youngest son, he has dysautonomia/POTS, a rare autonomic nervous system disorder. It is not fatal, but there is no cure. One of his worst symptoms, one that has led others to think he actually had suffered from Traumatic Brain Injury (TBI), has been the complete loss of memories of his childhood. Coupled with that was the inability to remember anything short-term either. He needed a phone with constant reminders, even to remember to eat lunch.

It has been a heartbreaking FIVE years since he first told me he thought he was losing his mind and couldn't remember anything. No one could give us a definitive answer, and back then as his health continued to deteriorate, they even looked for tumors. A neuropsych evaluator said that she only saw deterioration like this in terminal, progressively degenerative disease. His therapist counseled me to treat him like an early Alzheimer's patient.

As a mother, I was devastated. Here was the same little boy who tried to memorize his times tables in kindergarten, now getting hung up on spelling the word "the." The entire house became his memory system, and he relied on everyone to keep him oriented. I played music that we all loved. His brother, though annoyed, let him play certain things over and over again. We bought him a phone, not so much for the ability to make calls, but for the ability to keep reminders of everything. Reminders to take his medication. Reminders to feed the dog. Reminders to take a shower.

School became useless. No one has ever answered my question: How can you learn if you can't remember. 5th, 6th and 7th grades were completely lost. Anything he wrote down, he couldn't even recognize his handwriting.

I took old pictures and scattered around the house. I wanted him to at least be comforted by the images. Even though, he would pick them up over and over again, and ask me the story behind each one.

As days turned into years, I stopped using the words, "Don't you remember?" In fact, the word remember was stricken from my vocabulary. We all tried to help him live in the present, even as each new moment became the present all over again. The best analogy came for the neuropsych evaluator. She said it was like his mind took a Polaroid snapshot of each moment and then threw it away. Each moment was never connected to the next.

Then came that night.

All I can remember is that it was like a damn broke and everything flowed with the flood of recognition. Childhood memories that included the feeling of the backpack hitting his shoulders as he walked down the halls in first grade. Holiday celebrations in homes in other states. Smells of food that he no longer liked to eat. There was no rhyme or reason to it, just stacks and stacks of memories. Some as disconnected as ever, but others attached to more memories in odd, disjointed ways. Like how the feeling of the backpack led to a description of the school walls and how they felt.

He went on for the better part of the night. After awhile, I just listened, not daring to speak, hoping that the more he spoke, the more he would remember...and retain. The elation on his face of realizing he did have a past. He didn't just pop up one day, 13 years old. He hugged me again and again, like a long-lost friend. He went around hugging everyone and fingering household items like he saw them for the first time. He went to bed with such a look of satisfaction, I just sat there for more than a half hour, looking at him.

The next morning, he remembered the event, but not the memories. In a week, the event and the memories were gone.

I cannot even write about this anymore! I am in such anguish at his loss and mine. All I know is for more than two hours, one evening, a little boy was connected to his mind. I will never forget that look on his face. The confidence. The serenity.

Today, we are back to square one. I try not to remember in front of him. He tries not to think about how he can't remember. We use reminders for everything. The pictures lay scattered around. And, he asks me again, what day it is.