Sunday, January 31, 2010

Asthma

Colby is twelve when I am diagnosed with asthma. It is he, in fact, who diagnoses me. He has had asthma since he was three and somehow knows that my series of worsening coughs is asthma, rather than allergies.

Colby also has (had) asthma. From the time he is three until he is nine, Colby has several stays on the children's floor of Vanderbilt Hospital. This is before the new children's hospital is built. His first asthma episode comes on the last day of my old job, the one I resign from so I can open my own business. Colby is three and a half and I want to do this so I can be a room mother, go on his school field trips, and take him to ball practices.

On this afternoon his babysitter calls to say I should come early. Colby is sick. I am desperately trying to wind things up at the old job, but I get there as soon as I can. The doctor, not his usual physician, asks why I'd waited so long before bringing him in with an asthma attack. I reply that my son doesn't have asthma. But apparently now he does.

We are on the children's floor for five days. Twice, hospital volunteers stay with Colby while I go back to our house to feed our two dogs, and our cat and horse. Colby has breathing treatments every four hours so we are up all the time. The only place for me to sleep is in an armchair. I am so very, very tired.

On the second day, representatives from the bank come to Colby's room so I can sign the loan papers for the new business. On the third day I come down with a sinus infection. On the fourth day I am in the hospital parking lot, coming back from feeding the animals when, exhausted, I slip and fall, breaking my instep. I hobble up to Colby's room and spend the rest of the afternoon and all night in the chair with my foot propped up on the arm. How ironic, I think, that I am here in the hospital and cannot go to the emergency room; there is no one to watch Colby. The next day, as soon as they release Colby, we limp down to the emergency room where x-rays confirm the break. I am on crutches for the next six weeks. None of the later stays were that dramatic, but combined, they gave Colby a sixth sense about asthma.

After I am diagnosed, Colby is (was) always the first to recognize my impending episodes. He could tell just by looking at me, or after few seconds on the phone, and would ask if I'd thought about checking my air flow or using an inhaler. Now, without Colby's instincts, I find myself in the throws of a bad asthma episode. Not bad enough to seek out a physician, yet. But maybe. Maybe soon. Without Colby I cannot tell until I am already wheezing that asthma is rearing it's ugly head again. His early intervention stopped most of my episodes and they rarely needed professional medical attention.

Every day I find another way to miss Colby and today this is added to the list. This, now, is added to his humor, intelligence, eclectic taste, quirks, talent, kindness, conversation, and a host of other things. Today I read a heartfelt letter from a mom who lost her son forty years ago. Her heart is still breaking, as is mine.

Friday, January 29, 2010

Nine

I am maybe 3/4 of the way through sorting Colby's things. It has taken six months of steady work to get this far. Now it is time to sort and organize what I have gone through. So far I have nine cell phones, nine flashlights, nine cassette players, nine speakers, nine backpacks. There is more to sort through. He was a pack rat. I may find more.

This sorting is bittersweet. Some days I can't even think about it because it is too real. Sorting through Colby's things means he is really gone. He is not coming back. Other days I rummage with a vengence, clearing space, clearing clutter, needing the process to be finished so I can move on. If one ever can. I am not convinced that is possible. I am forever changed.

Every time I sort I hope to find something of meaning. And often I do. I have found a box of Christmas and birthday cards his grandmother and I gave him over the years. He saved every one. I find photos of us, of a dog we had for many years, of his grandma, all in the backpack he had with him when he passed. There are many scraps of song lyrics and poems, and abstract acryllic paintings he did. There is a collection of old coins he used to study and pour over, and lots of music, his music, that I haven't gotten to yet.

Schizophrenia sucks. It really does. It and its effects, the paranoia, anxiety, depression, panic attacks, and resulting use of drugs and alcohol to try to feel normal, has devastated so many branches of my family. My mother's side of the family. And now mine. I am the last. On one hand I am glad that there is no possibility that our genetic makeup will contribute further to this disease. On the other, I am still so very lost and alone without my son. Researchers are making strides in understanding schizophrenia and its ravaging effects. I support them and pray that someday this disease will be completely treatable, or even curable. No one needs to hurt this much.

Wednesday, January 27, 2010

Fate

I think a lot about fate and destiny. For example, are each of our lives pre-ordained? Is there a master plan in place for us? Is the length of our stay here on Earth determined before we ever arrive? Do we meet the people we are supposed to meet, or is chance truly chance?

And what about us? Why are we here? Are we here to learn lessons? To help others? To enjoy life? Are our gifts and talents chosen by us? Given to us? And why are we born to our specific parents? Why was I born in Minnesota rather than Australia? Or Japan? And why now? Why was I not born, for example in 1726, or 1532, or 2145? What is our purpose? What are we supposed to do? How do we know when it is time to go?

This, obviously, is a confusing time. I think about Colby and wonder how he knew at age five that he was not going to live long. I wonder why he had learning disabilities? Why he had mental illness? I wonder if I'd had other children, would they, too, have had the same?

So many questions and the more I think the more questions I find to ask. So far there are very few answers. I wonder if they will ever come?

Monday, January 25, 2010

Six

It is six months today since Colby passed. It seems like just yesterday. And some days I still can't believe he is gone at all. This morning I talk with a parent whose child has been gone for almost fifteen years and she says it is only in the past year that she can think of her son without pain. Fifteen years. I hope I can someday reach that stage in my grief, but today I can't possibly fathom life without the pain of his loss. Colby touched so many and we are all profoundly affected by his absence. I hope he knows how much he is loved and missed, how much his life enriched all of ours, how we hope and pray for his happiness and peace.

A counselor suggests I try to figure out what I have learned in the past six months. I break the list into groups: positive things, negative things, what I have learned about myself, about Colby, about others. The list grows throughout the day and at some point I begin to shorten the list, to edit it down to what is most important to me at this hour of this day. Much of what I learn comes from all-night sessions with myself and with God, and also from sorting through all of Colby's "stuff." The top ten things come down to (in no particular order):

• Colby's mental illness was greater than anyone realized
• Colby was many things to many people, which is part of the schizophrenia
• Colby "knew" at a very young age that he would not be here long––and he was okay with that
• Colby cared very much about people, animals, and the environment
• Colby struggled silently, when opening up could have brought him help
• I love Colby unconditionally and will never get over his loss
• I am still terrified at the thought of being the last of my family
• Like Colby, I have many wonderful friends
• I miss Colby with every breath I take
• I am more proud of my son than words can ever say

Tomorrow's list will look different, as did yesterday's. My emotions are still on a huge roller coaster, doing so many loops and spins that I wonder if I will ever find my way off of this ride.

Saturday, January 23, 2010

Remembrances

I am behind on my tasks for counseling. Today I drive to a small town near where Colby and I used to live and have lunch at a restaurant where we used to eat. My task is to remember good memories we had there. I sit first at a table, but that is too hard. Colby should be in the seat facing me; his absence is too strong so I move to the counter. There, I first see Colby making sailboats out of his fish sticks and launching them in a sea of tartar sauce. Then I watch as he makes letters and words out of his french fries. I see him through the anorexic years and remember my anguish every time he left to use the rest room. Later, I visualize him loving a steak salad he ordered.

For some reason I can't swallow my food so I get it boxed up and drive a short distance to a park Colby and I liked. His second grade field trip was to this park when they had a festival honoring the area's history, and I remember the smile on his face as he wandered through the area with his classmates. Then I drive up to the road to a spot where I used to take Colby and his friends fishing. I can't recall them ever catching anything, but they sure had fun trying.

I am not sure what this exercise is supposed to accomplish. Maybe that's part of it, I am supposed to figure that out for myself. Today I learn I can face places where Colby and I spent happy times, and that's a good thing. I know I could not have done this a few months ago. I also learned that if I have a choice, I'd rather not. I got through the day, but it made me sad, wistful. I have been putting off errands in other places Colby and I had fun. I think I will put them off a little longer, even though I know that if I have to do them, I can. Maybe I'll try again in a few months.

Friday, January 22, 2010

Research

One of the things I struggle with most is Colby's schizophrenia. There were many in my family who had this complex disease, so I know he inherited it from me. I feel tremendous guilt over this, even though I know one cannot help what genes he or she passes on. Nor can a person control how those genes mix with the other parent and manifests in the child. Schizophrenia is hard to predict. It skips around like a tornado, landing here and there, missing this one and that one, but causing horrible destruction to everyone who is even on the periphery of its path.

What family I had when I was younger was not close, so I did not know until recently how many were affected. But even if I had known, in the years leading up to Colby's birth, there would not have been anything I could have done. There was no genetic screening back then, no way of predicting whether or not a person was carrier of a specific gene. But now all that is changing.

According to a study conducted by researchers at Mount Sinai School of Medicine, variations of a gene related to brain development and function (OLIG2) may cause the development of schizophrenia. Researchers have already classified schizophrenia as an hereditary psychiatric disorder. Earlier research suggested that schizophrenia is associated with changes in myelin, the fatty substance (or white matter) in the brain that coats nerve fibers and is critical for the brain to function properly. Myelin is formed by a group of central nervous cells that are regulated by the gene OLIG2.

The new study showed that genetic variation in OLIG2 was strongly associated with schizophrenia. In addition, OLIG2 also showed a genetic association with schizophrenia when examined together with two other genes previously associated with schizophrenia, CNP and ERBB4, which are also active in the development of myelin.

As researchers further unravel the role of OLIG2 and myelin in schizophrenia, it is possible that medications like those being developed for the treatment of multiple sclerosis, a disorder associated with a breakdown of myelin, may have a future impact in the treatment of schizophrenia. This news is so exciting to me. None of us know how difficult life was for Colby. He was the only one walking in his shoes, but I do know that he struggled, daily, hourly. I would not wish his circumstances on anyone. But it is quite possible that future generations may not only have more effective treatment, there may someday be a cure.

Thursday, January 21, 2010

Tears

I sit in a room with eight strangers and cry. This is so much harder than I ever imagined. Their stories are all so heartbreaking, then others cry when I tell mine. The other people, like me, are grieving parents. Each lost a child within the past year and each is as sad, as lonely, as overwhelmed, and as devastated as I.

Sitting here, listening, rarely speaking, I realize what I mess I still am. Will be for some time to come. May be forever, for the loss of a child, my Colby, isn't anything you ever get over. Some learn to live with the loss, but that takes years. In four days it will be six months. Six long months. Living the rest of my life like this is unimaginable. But, like all the other parents here, I will. I have to. I have no choice.

Someone asks if I am okay and I don't have a clue how to respond. If okay means I am functioning, then yes. I am. I get through my days. I wear masks that fool most people into thinking I am doing well. If okay means I have a plan to get through the next hour, the next day, then no. If it means I am happy, again, no, and I can't imagine that I ever will be.

I get in my truck and drive the five miles home. It takes me an hour and I have to pull off the road four times. The tears are coming so fast I cannot see to drive. I miss Colby so very, very much. I have not felt this bereft, this lost, in several weeks. From experience, I know the tears, the emotion, will pass quicker if I give in to them, and I do.

The tears stop and their shaky aftermath arrive as I pull into my driveway. I open my door, fire up my computer and put the finishing touches on a project. If I work, I do not have to think. If I do not have to think, just for now, I can get through the night. It almost sounds like a plan.

Tuesday, January 19, 2010

Map

In my dream I am up in the sky looking down on the United States. The entire country is perfectly flat and the color of cream. The land has a hard laminate surface and all of the land is elevated about a foot from the flat, motionless, dark green ocean that surrounds it. The country also has a red border around it.

The cities are marked with a small red circle and dark green type, and the roads are all the same size, designated by dark green squiggles. No road on this map is straight and many end in a dead end. As I watch, I see myself, a cartoon figure driving east in a black convertible. It doesn't seem strange that I am both in the sky and on the ground.

I am watching from such great height that my car and I are about as big as the end of a pencil. But I can see that my hair is black and pulled back into a pony tail. I am driving through what in real life is probably Missouri. The town I have most likely just driven through, the town just to the west of my car, is labeled Lost. I am halfway between it and Confused. To the north is Disoriented and to the south is Stuck. I watch as I stop at a crossroads between all of the towns and turn the car off. I know that I am looking for Colby but I have no clue which direction I should go. I climb into the back seat and sit on the top of the seat back. My feet rest on the center of the sitting part of the seat. Neither of my selves feel anxious. After a time I climb back into the driver's seat, start the car and put it in gear. Before I drive off I turn to my right and smile and wave at myself in the sky. I wake up before I know where I am going.

Saturday, January 16, 2010

Earthquake

When I learned Colby had passed it was as if an earthquake flattened my world. My center of balance had been yanked out from underneath me and when I fell I had no idea where I would land. I am still not sure. I have not yet found my balance. Some moments I do better than others and when a challenge, an aftershock, presents itself, all I can do is hold on. Sometimes I find myself flat on the floor again, wondering how in the world I am going to get up.

Today I have a little aftershock and I do not handle it well. Then I think of all the Haiti survivors. When they learned a loved one had passed they did not have a comfortable home to retreat to. They did not have electricity, running water, food, shelter, clean clothes, the Internet. They did not have any of the comforts of home. no photos to remember loved ones by. No momentos. No remembrances of lost loved ones. Nothing. Most do not have phones. Many learned of multiple losses when they themselves were injured. I was fortunate. I did not have the panic of trying to find a loved one who was missing. I did not have to suffer in agony while waiting for medical care. While my pain is excruciating, theirs is unimaginable. Yet they are managing to go on.

You can help ease the suffering of the people of Haiti by making a $10 donation. Just text HAITI to 90999. The charge will be added to your next phone bill. If we all sent $10, which most can afford, we can ensure that adequate medical supplies, food and water are available. While Haiti is a long way away, the next major earthquake could hit our hometowns. The next one could affect us profoundly.

Thursday, January 14, 2010

Haiti

Today I learn that during the 2009 holidays a group of men in recovery gather clothes and in Colby's name distribute them to the homeless under Nashville's Jefferson Street Bridge. The men are from Grandpa's House, a Nashville-based nonprofit recovery support facility that Colby would have entered in Fall 2009.

I am overcome, truly overcome, with gratitude that these men would honor Colby and his memory in a way that would have meant so much to Colby. Colby felt deeply for those who live with life's unfairness, life's sadness, for those who work so much harder than the rest of us just to survive. As a group, these men from Grandpa's House are doing what Colby wanted to, but could not.

Colby wanted to make life better for those who had it rough. When he was twelve, he'd take his guitar, his harmonica, and a couple of extra soft drinks to the park to play for the homeless. When I asked him why he wanted to do that, he said, "Because no one else will. Because they are human beings who enjoy music all the more because they rarely get to hear it played. Because they are human and deserve the respect I can give them." This, from a boy of twelve.

Colby and the men from Grandpa's House remind us that a little compassion, a little help, can make all the difference. They remind us that those who are in need cannot pull themselves up by their bootstraps if they have no boots. That a little can go a very, very long way.

That said, I know Colby would be so very proud if you took a minute to text HAITI to 90999. This will make a $10 donation to the Red Cross relief effort there and will be added to your next cell phone bill. I did and I could feel Colby smile as I did.

Tuesday, January 12, 2010

Health

I haven't been taking care of myself. For years I adhered to a special diet and I have not been doing that since Colby passed. It has been hard enough just to remember to buy groceries, much less the correct groceries. Then eating them is an entirely different matter. It's not that I don't want to eat correctly, it's that I have not been able to focus enough to do so.

Eating right for me is different than for most people. I have a chronic illness that is controlled by diet and I have a genetic predisposition to heart issues. I have had close family members pass away at very early ages from massive heart attacks. My blood pressure is very low, which is good, but my triglycerides are somewhat high, which is not so good.

This week I had a bad asthma attack. Knowing that for me this is a symptom of other things going on, I had blood pulled. The results were not terrible, but they were not good either. Compared to other people, I still have very good eating habits. I rarely eat either fast food or "junk." But balancing the dietary needs of my illness along with the needs of keeping my triglycerides down is a delicate matter. Colby was always great about reminding me, based on what I'd already eaten that day, to eat a little more protein, or something with little salt. This is just one of the many areas of my life that is empty without Colby. Today, after a dietary review my doctor said, "It's almost as if you want to die."

The words stun me. I wonder if, subconsciously, that is what is happening. Or, is it that life is still so overwhelming? I do not know, and add it to my growing list of things to ponder. I do know that Colby would want me to take care of myself. I have many things yet to do, and one of them is ensuring that Colby and the things he stood for, the things that were important to him, will never be forgotten. To do that I have to be healthy. To be healthy, I have to closely monitor what I eat.

My doctor suggests joining sparkpeople.com. It's a free site where you can track your food intake and it automatically gives you the nutritional breakdowns. You can customize just about everything and it also gives you video demos of suggested exercises and fitness plans. I signed on and we will see. So far it has been a real eye-opener. I have already learned that even though I thought I was doing well in my specialized diet before Colby passed, I really wasn't. While I won't do this for me, I will do it for Colby. For his memory. For his beliefs. Colby was too good a person to go unremembered, and the world will be a better place if Colby's ideas on the environment, animal welfare, and human dignity are embraced by many.

Monday, January 11, 2010

Strength

I walk down a grassy path when a big, bright green, poisonous snake with a head the size of a tennis ball slithers toward me. I see the snake coming and stop. I know the snake will bite me, yet I do nothing to prevent it. And yes, the snake does bite and I feel a sharp sting on my calf. I know I should get sick quickly, but I don't. I wait . . . and wait. I prepare myself for waves of pain. When nothing comes I begin to walk again down the path.

The grassy area changes to trees and a huge dark gray dog with matted hair lunges at me. I can see that the dog is rabid, yet all I do is stop. I do nothing to prevent the bite. I feel the tug as he clamps onto my right forearm. I feel the skin break and know I should have been infected with rabies, but I sense that I have not. I wait again, wait for the dog's saliva to travel through my body, but I know in my heart that I am fine and I continue on.

The trees change to deep woods and I encounter a woman with short, straight dark hair. She is in her late thirties and dressed "business casual." I wonder how she can walk through the woods in her high heeled black boots and why the shiny black purse she wears on her shoulder doesn't catch on the tree branches. There is no grass here and all the trees appear to be dead. She approaches with a smile and I realize instantly that the gel she rubs into my dog bite is meant to finish the job. It is supposed to kill me instantly. Once more I wait for pain, dizziness, the inevitable blackout. But none of that happens. I look at the woman's wavering smile. She is not sure why the gel didn't drop me instantly. I am not sure either. Eventually I smile and brush past her, and walk further into the lifeless woods. I do not look back.

This, of course, is a dream. I speak with my counselor and we conclude that the dream is a sign of my strength. That even though I have been hit, attacked by tragedy more than once, I have the strength to walk through it. And, because I did not flinch or run away from it means I am willing and able to meet challenges head on. That I woke up before I made my way out of the woods could mean I am still dealing with my tragedy. I don't feel strong, so maybe the dream is a way for me to know I am stronger than I think I am.

Colby was not in the dream, but throughout, I had a sense he was watching from an elevated distance somewhere to my right. He watched calmly, not helping because he knew he didn't have to.

Saturday, January 9, 2010

Ovens

I am not a cook. This is mostly due to the fact that I do not have a sense of taste or smell. Sometimes, on a good day, I can smell cinnamon, but never smoke or fire. That's why when I blew up the oven a few Thanksgivings ago Colby and I decided it shouldn't be replaced. I have a history of unintentionally setting the kitchen on fire. Instead, Colby got me a small toaster oven with a glass window, so I could watch the food cook. This was so I could take the food out of the oven before it burned up. For the most part, that idea worked.

Today, however, the toaster oven that Colby so thoughtfully gave me died. I unplug it from the wall and slowly wrap the cord around its body. I feel immense sadness, even though I know the oven was old and had worked hard day after day. But it isn't until I drive to the store to buy a new oven that I break down. I park in the lot and cry, big, heart-wrenching sobs. Not having this particular oven, this thoughtful gift from my son, means that I am one more step away from Colby. This new oven will hold none of the memories of the old and today that is almost more than I can bear. Almost.

A while ago a friend sent me a quote about every day that passes means I am one day closer to seeing Colby in heaven. I believe that is true. But it is so hard to put that twist on it, to view it from that perspective, when all I feel is that each day that passes takes me one more day away from his last words, his last hug, his last gift, his last phone call. But I try. I do try.

I dry my tears, purchase a new oven, bring it home and take the old oven down to the trash bin. I find it interesting that I have no desire to hang on to it, even though it was something very special that Colby gave me. Maybe it is because my home is filled with thoughtful gifts from him. Or, maybe it is because I am further along my journey in grief. Or, maybe it is just because my house is still so overloaded with stuff that I know I need to get rid of as many things as possible.

I close the lid on the trash can and give it a pat. Then I climb the stairs to the kitchen and sit down to read the new oven's directions. If I can't have the oven that Colby gave me, then at least I can have the thought behind it and do my best to keep my kitchen flame free.

Thursday, January 7, 2010

BabyColby

When Colby was younger, much younger, he used to love to hear stories of BabyColby. BabyColby was, of course, Colby as a baby, but over the years, through the many stories, he morphed into his own separate entity.

BabyColby used to grab my index finger so hard it turned purple. When we were going somewhere in the car he'd reach over from his car seat (this was long before the recommendations were to have your child ride in the back seat, or even facing backwards) and grab my hand. Then he'd babble in paragraphs. It was never just words, or even sentences. Even as a baby Colby had strong opinions about things and voiced them loudly. To illustrate his point he'd pound his hand (along with my purple finger) into the arm rest of his car seat, then he'd laugh. His laugh then was a sharp intake of air that sounded more like an asthmatic wheeze than a sound of merriment.

BabyColby stood up for the first time on his six month birthday. He began walking at nine months, and at thirteen months said his first sentence, "Mom, it no go." BabyColby was in the yard with me as I picked up sticks and his words were in reference to a huge log he was trying to move. "No," I said. "It's too big. Let's pick up these smaller sticks instead." And so he did.

I wonder now, if BabyColby knew, even then, that he would not be here long. If that was the reason for the early milestones. Certainly by age five Colby was verbalizing his knowledge of his short stay here on Earth, although I refused to believe it, acknowledge it. It  wasn't possible, was it? Kids just don't die young. But they do. Many of them do.

I look out now at a few stray sticks in my yard and think of BabyColby and how much I wanted him, loved him, still love him. Every baby is precious, special, but BabyColby really was so much more than just precious and special. he was much more than that, and even though he is not with us any longer, I know he still is.

Monday, January 4, 2010

Lists

I have not been in Colby's room in weeks. This is not by design, but more because I was out of town the last two weeks of December. Today I look at the remains of Colby's life. The remains of his "stuff," as he would have said. There is so much left to sort through. This large pile of his things is about three feet deep and takes up most of the room. There is one narrow path the connects the two doors, which makes it easier to navigate. I don't even think about all the "stuff" that is still in the basement, or in boxes in the kitchen, or the more than 500 books that are on shelves in the dining area.

I can't think where to start so I grab a small box out of an open suitcase and find bits and parts of things. They are black. Mostly. Some silver. All shapes and sizes. Most are small enough to fit in the palm of my hand. Bits of musical gear. Probably. I don't have a clue what to do with them so I drop the box back into the suitcase and stare at the unorganized pile. There is a bit of paper in the suitcase so I fish that out and find our New Year's Eve list for 1994. Each year on New Year's Eve Colby and I always made a list of the top ten things we were grateful for that year.

This would have been the New Year that Colby was nine. We were living with friends. I had been ill that year with a condition I still have to watch closely. But that year, that first year I was sick, was hard. I closed my Music Row office and we had to leave our rented farm outside Nashville. I remember being afraid that Colby wouldn't be able to find too many things to be grateful for that year. But he did. Here they are as he wrote them:
1. Grandma!
2. Mom!
3. Bootsie! (our cat)
4. Food!
5. Pizza!
6. New home!
7. Toys!
8. A new year!
9. God!
10. Animals!

I remember now his enthusiasm for the move, how much he helped when I was having a really tough day. Colby was in counseling then, grieving for a treasured pet who had recently passed. He was also having trouble in school. His learning difference had yet to be diagnosed, but his difficulty in writing, knot tying, ordering, organizing was apparent even then. To compensate, he began acting out. This counselor, the first one he saw, was good. She helped a lot.

I think if Colby could find ten things to be grateful for that year, I should be able to find ten now. It takes me some time to compile the list, mostly because I am still so unfocused. Life for me is like thinking through syrup. I get there, but it takes me some time, time that is uninterrupted, quiet.
1. Friends
2. My home
3. My truck
4. My four-legged friends
5. Work/clients
6. The Internet
7. My cell phone
8. My counselors
9. My support group
10. Time

The list is in no particular order. That is too much to think about right now. But, my life would be infinitely worse, would be completely unmanageable, without any one of the above. I truly need each of those things and am so very glad that I have them. We all take everyday conveniences for granted. Instead, we should treat them as the blessings they are, for not everyone has them.

Friday, January 1, 2010

Resolutions

I always make New Year's resolutions. From the time I was small I used the opportunity the new year brought to try to better myself. More recently I made two resolutions around the first of the year: one for me and one for the betterment of the world. For example, the resolutions might be to walk more and to pick up more litter. Or they might be to eat less ice cream and do one nice thing a day for others. This year, however, I have no resolution.

This year I can't wrap my brain around a resolution because I can't think far enough ahead to sustain such a commitment. In my grief, I am still operating day-to-day, hour-to-hour, sometimes minute-to-minute. Right now, to me, next week seems an impossibility.

Colby also had resolutions. Together, we thought about them over the holidays, and made careful choices. For many years we wrote our resolutions down and put them in the family bible. It's too painful, today, for me to look at them, but I remember several of his resolutions were to call his grandma daily, to read more, to take better care of his clothes, and for years he was able to keep his resolutions. For what are resolutions other than ways to build good habits? Once you do something every day for long enough you don't think so much about it, you just do it. And he did. More recently, though, it was a struggle for him to simply survive and that's where I am now.

Some days are better than others, but each day of grief still brings inordinate challenges in personal strength, optimism. Daily tasks that were once very easy have become very difficult. Going to the store, the post office, interacting with people, just getting up in the morning is sometimes nearly impossible. But I do all of it, each day hoping it will be easier than the last. So instead of a resolution I have a wish, that I just get through the year, day-by-day, hour-by-hour, minute-by-minute and that by next year I will be strong enough to have the resolve to make a positive addition or change to my life. I am not sure if this is a reasonable wish, if it is even possible, but it is a goal, something to strive toward and that in itself, is almost a resolution.

Thursday, December 31, 2009

Snow

The New Year's Eve that Colby was ten it snowed. Big, fat, silent flakes drifted from the sky and by early evening most Nashvillians were either tucked away safely in their homes, or already at their chosen celebratory location. On our street, in our neighborhood, not a single car had gone by since the snow began that afternoon. By eight, there was a good five inches of snow on the ground and we decided to go for a walk.

Outside the silence was stunning. Cocooning, if there is such a word. On the west side of town not a hint of freeway traffic could be heard. Not a door slamming, no voices, no planes. Not that it was a particularly noisy neighborhood where we lived then, but there were always city sounds in the background. Not so tonight. We walked down the sidewalk and when we reached the street we turned right. We started on the side of the street, but as it became apparent that we had the entire neighborhood to ourselves, we moved into the center with the crunch of our feet in the snow making the only sound we heard.

Colby and I marveled that the only tracks we saw were our own. Not even a dog or a rabbit had ventured out before us. And while most of our walk was in complete silence, on the way back, when we doubled over our own tracks, Colby said he hoped all the people and animals without homes had found a place to stay that night. Then he offered his room to anyone we might pass who was shivering in the snow, and I began to cry. While the chances were very slim that we'd come across anyone, Colby's offer was made in earnest. I was reminded once again what a gift Colby was, not just to me, but to everyone he met.

That New Year's Eve was by far my favorite of all my many new years. When we got home, we made hot chocolate and watched movies until it was time for Colby to open the door, run around the yard, bang on a few pots and yell "Happy New Year!" And, for the most part, it was. Although he had some problems, Colby's mental illness had not yet fully reared its ugly head. Today, I remember that magical night fondly. Like Colby, it was a gift, a treasure, and it reminds me that the best things in life truly are free.

Wednesday, December 30, 2009

Ornaments

I pull the empty Christmas boxes out of the garage and up the steps to the living room where I deposit them on the living room floor. Then I turn and survey my mom's Christmas tree. It is an artificial tree, a little taller than 6 feet, and it is loaded with ornaments, some of which date back to the 1950s. Each ornament has a story, a history, a place in our family.

I begin to pull ornaments off the tree. one by one, wrap them and place them in a box. Here's the tiny plastic horse jumping over a fence that a friend's mother gave me the Christmas I was eight. Here are the little metal raspberries that our local gas station used to give away during the holidays. Each one is a different color and I remember how excited I was when we got enough gas for me to go inside the station and choose a new one. Here's the angel I got in Hawaii, the beautiful ornaments with loops of hanging pearls that our neighbor made 50 years ago, and the painted birds that look so realistic that every cat we've had has tried to "catch" one.

I make selective picks from the tree, delaying the time when I have to take the loops of colored paper that Colby made when he was three. My hands shake as I touch the paper and tears roll down my face. as I lovingly wrap the paper in tissue and place it in the box. Next is the reindeer head made from Popsicle sticks. Colby made a dozen or more that year, the year he was eight, and gave them to everyone he knew. Then there are the pine cones Colby painted when he was 14, the lovely star ornament he gave my mom when he was 20, and the Snoopy ornament he gave me last year. By this time I have to sit down, the tears are falling so fast I cannot see.

The last ornament is the spire at the top of the tree. This was always Colby's job, to take the spire off and it was one of the last things we'd do before we left Minnesota to head back to Nashville. Mom always had the tree up and decorated by the time we arrived, but we always took it down. Even when he was small, two, three, four years old, I'd lift him up to the top of the tree and he'd carefully pluck the ornament and reverently hand it to me.

I reach for the spire. It's the second spire we've had in my lifetime. This one must be about 30 years old. I am all cried out by this time. The spire is wrapped and packed and I carry five boxes of ornaments back to the garage. I don't know if I can do this again. Next year. Next year, if the tree goes up at all, it may be better to hire someone to take it down, for there are too many memories, too many painful remembrances of the one person who should be here . . . and is not.

Monday, December 28, 2009

Holes

This is the time of year when families take down the old calendar from whatever centralized location it is posted in the house and put up a new, fresh calendar for the coming year. Our calendar was always hung in the kitchen. Colby and I would write our appointments and commitments on the calendar, and mark birthdays and holidays more as a way of keeping track of each other than as a way of keeping track of our own appointments.

For example, because Colby marked it on the calendar I knew that the last Friday afternoon of every month he rode in a community bike ride that departed from Nashville's West End area. And, because I wrote down when I was scheduled to be at a local therapeutic riding program that I teach at, Colby just had to look at the calendar to estimate what time I would be home.

This year, in 2010, there will be no calendar. This year, there is no need. I keep track of most of my appointments in my head and those that are scheduled more than a few weeks out I note in my computer. In years past, my mom has given us a calendar as a Christmas gift. This year, without speaking about it, there was no calendar. No gift to help keep track of each other. This year, there is no other. There is just me.

In a few days I will take down the calendar for 2009 and there will be a bare spot on the kitchen wall. As the calendars were hung with push pins there are a number of tiny holes in the wall, close together, each a little higher than the previous one. That way the new calendar would cover all the holes from the previous years. I should fill in the holes, or maybe cover them with something un-calendar like. Or, maybe I will just leave them as a reminder of all the holes in my life now that Colby is no longer here. Either way the holes inside me will remain, a permanent reminder of the biggest loss any parent can face.

Saturday, December 26, 2009

Snow

We are inundated with snow. It began three days ago and 17 inches later it is still coming down. Slowly, wistfully, as if it does not want to stop but knows it must. I shovel the steps and sidewalk every day. Sometimes twice a day. This is another task Colby and I used to share, that I now do alone. The ritual scooping of piles of snow in large flat shovels, scraping what we can of the ice that is adhered to the cement, then sweeping the shoveled space, and finally the spreading of ice melt in hopes that the next shoveling session is easier. Usually it is. Was. Because now, I shovel alone.

Before, after the shoveling was done Colby and I would make snow angels, snow forts, have an impromptu snowball fight or drive the mile or so to the local golf course and slide, or in Colby’s case, snowboard, down the big hill and across the tiny frozen pond. This is especially amazing as Colby was not at all fond of cold weather. He also didn’t like the thought of snow, although he liked snow itself. Liked playing in it. Now I do none of that, although I would enjoy every bit of it if Colby were here.

Sometimes, if the weather had been warm enough to create icicles on the eaves, Colby would take a long pole and attack the icicles until they had all fallen to the ground. I never had enough upper body strength to manage a pole long enough to hit a second-story eave, but Colby could do it when he was twelve. This year there are not many icicles. So far. It is expensive to bring someone in to knock them down because it is a dangerous job. If you don’t stand out of the way, one of the sharp, icy spears could slice right through you. Wearing thick, padded layers helps, but that also was something Colby was not fond of.

Everything I see here, everything I do, reminds me of Colby, reminds me of his loss. I am back to the numb state, incapable of feeling the anger that so recently permeated my being, incapable of feeling sad, or happy, or much of anything else. I can, however, remember. I can remember that Colby had wonderful times here in Minnesota. I can remember that a week before he passed Colby told me this house was the one place he felt was home. And for that I can, do, feel gladness.

Thursday, December 24, 2009

Gifts

This is the time of year when friends and families exchange gifts. This is the time of year that Colby and I together would choose gifts and wrap them. Together. He and I.

I am not up for the physical exchange of gifts this year. It doesn’t seem right to do this without Colby. Next year. Maybe. But that I do not exchange gifts does not mean that I don’t have any. I have plenty.

My gifts this year are great friends, strangers who have gone out of their way to help me, clients who keep me busy, my health. My gifts are work that I enjoy; horses, dogs, and cats that I love; a safe place to live. My gifts include wonderful memories of Colby, many things to remember him by, the knowledge he is at peace in a place that is better than the planet on which we live.

While I have lived this year through the worst nightmare any parent can experience, life could be much worse. I could be homeless, indigent, without friends or support. I could be sick, without transportation, or live in fear. My gifts are that I have none of those and plenty of the rest. I also have a sense of peace about Colby’s passing. Today anyway. Tomorrow may be another story. Another day. But today I feel he is happy where he is and that’s all I ever wanted for him, that’s all any parent ever wants for their children. Happiness. I am still very sad, distraught, helpless that Colby could not find what he needed here. I will feel his loss deeply with every inch of my being, every breath I take, every second of every day until it is my time to join him. But that is my sadness, my grief, my loss. Not Colby’s, but mine. This holiday season I know Colby is happy and that is my biggest gift of all.

Wednesday, December 23, 2009

Three

Until Colby passed we were a family of three. Colby, my mom, and me. Colby and I in Nashville. Mom outside of Minneapolis. Mom is elderly. It is hard for her to get around. Other than going to the neighborhood store, post office and library, Mom doesn’t go many places. Instead, she saves all her big errands for the several times a year Colby and I come to visit. Then ensues a whirlwind 10 days of going here and there, doctor’s appointments, hardware store, big box stores, garden store, and on and on. Of course, this was before.

The usual plan was that I drove and dropped Colby and Mom at the entrance of wherever it was we were going. He helped her out of the car and into the store. Mom is wobbly and walks very slowly, even with assistance, so his guidance was much needed. I’d park the car, then join them inside. But now, without Colby, all of this is much more difficult. Now, there are two options. One is to pull up to an entrance, help Mom out of the car and then guide her to a seat outside, or just inside the building, and hope I do not block traffic in the process. Even if the seating is 20 feet from the car, it is a five minute process to get her out of the car and escort her to the seat. Or, we can park in handicapped parking if the parking is no more than 20 or 30 feet from the door. As you can imagine, There are a number of stores, restaurants, offices that I just can’t get Mom into.

Mom walks with a cane and gets around a little better inside a store by leaning on a shopping cart as she pushes it. Forget about a walker, wheelchair or even the motorized carts you sit in and drive around the store. She won’t hear of any of them. She would discuss those things with Colby, but he had not yet gotten her to commit to trying any of those options. She also wore her hearing aids for him, but, not for me. This means she cannot hear the instructions I give her to please stay put until I park the car and get back to her. Often by the time I get to wherever I left her she has toddled off somewhere, usually not the store she had planned on going to. So I frantically dash in and out of store after store as I try to find her. By the time I do she is exhausted and can’t figure out why it took me so long to park the car.

Mom is my only family member. I want, need, her around a long time but at close to 87, reality says otherwise. I would love it if my time with her were not so frustrating, exhausting, draining, exasperating. And, when family once was three, it is now quite hard being two, especially because I know that before long the two will be just one.

Tuesday, December 22, 2009

Premonition?

Last year at this time, as Colby and I drove to Minnesota to visit my mom, he turned to me in the truck and said, “I want this to be a really good Christmas; I think it is the last one we will all spend together.”

I, of course, thought Colby meant my mom might not be around this year. She was 85 last year. At that age, every day, every hour, is a gift. And that is, probably, what Colby meant. Colby had plans, things he wanted to see, do, experience. I know it was not his intent to leave us.

When Colby said those words it never crossed my mind that it was going to be Colby who was not with us this year. If it had, I wonder what I would have done differently? Anything? Everything? I know I would have hugged him more, told him I loved him more. I would have asked him that, when his time came, to find relatives and loved ones who had already passed and tell them how much I love and miss them.

While Colby always felt he would not live to be old, I do not think, a year ago, that he felt he only had a few days left. If he had, I also wonder what he would have done differently. How would he have spent his remaining days? Would he have traveled? Played more music? Eaten more junk food? Spent more time with friends? What would any of us do if we knew this holiday would be our last?

Were Colby’s words a premonition, or just the reality of having an 85-year-old grandmother who is not in great physical shape? We will never know and even if we did, knowing this particular fact would not make any difference. What will make a difference is to let those around us know we care. When we greet friends, we need to let them know how truly glad we really are to see them. We need to listen closer, help and support more, smile when we can, give as circumstances allow. I hope everyone reading this has many, many wonderful holidays ahead, but even more, I hope everyone makes the most of each and every day, whether the days number 100 or 10,000.

Monday, December 21, 2009

Wishes

Several people have sent me the following, and it is so true that I felt I should share.

"A Bereaved Parent's Holiday Wish List"
Author - Unknown

1. I wish with everything I have that my child hadn’t died. I wish I had him/her back.

2. I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he/she was important to you also and I treasure your stories.

3. If I cry and get emotional when you talk about my child I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

4. I wish you wouldn’t “kill” my child again by removing his pictures, artwork, or other remembrances from your home.

5. Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you now more than ever.

6. I need diversions, so I want to hear about you. I might be sad and I might cry, but I wish you would ask about my child; I love to remember him.

7. I know that you think of and pray for me often. I wish you would let me know those things through a phone call, a card or note, or a real big hug.

8. I wish you wouldn’t expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.

10. I wish you wouldn’t expect me “not to think about it” or to “be happy.” Neither will happen for a very long time.

11. I don’t want to have a pity party, but I do wish you would let me grieve. I must hurt before I can heal.

12. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.

13. When I say “I’m doing okay,” I wish you could understand that I am not okay and that I struggle daily.

14. I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.

15. Your advice to “take one day at a time” is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I’m doing well to handle an hour at a time, or a minute.

16. Please excuse me if I seem rude; that is certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

17. I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before he died, and I will never be that person again.

18. I wish very much that you could understand understand my loss and my grief, my silence and my tears, my void and my pain. But, I pray daily that you will never understand, that you will never experience this loss.

Sunday, December 20, 2009

Families

Thanks to so many of you you who contacted me after my fall. I am recovering nicely. Still still and sore, but improving daily. Thank you, too, to all who have written me of your personal stories of loss through schizophrenia. It helps to know that I am not alone in my grief and loss. This illness is so often misdiagnosed, so often mistreated. The result is that families are ripped apart and the survivors will never, ever, again be whole.

I think of this Christmas season and all the things our family, Colby and I, will never again do. Our traditions of wrapping presents, sliding down the hill at Red Oak golf course, going to Savers and the Mall of America, playing Michigan Rummy, finding the one new ornament on the tree, and all the traditions of Christmas Eve and morning, all of that for us, for me, is lost forever. Schizophrenia took it all.

The guilt I feel will never go away. It was my genes that manifested in Colby’s illness and resulting addiction. It was my family who has had members of each generation as far back as we can trace who had this mental illness. It was me who made Colby a walking time bomb. If I’d had other children, would they, too, have been afflicted? There is no way to tell.

I heard this week about a grandma, mom and two sons who all have/had schizophrenia. The mom and grandma died because of it, the sons are, so far, receiving treatment that is keeping them functioning. The trouble with schizophrenia is on several levels. One, there is no definitive test. Diagnosis is a process of guesstimation, trial, and error. And two, while just about every parent of a son or daughter with schizophrenia I have spoken to can say, “Yes, I now realize my child was showing signs of this at age 8, or 10, or 14,” schizophrenia is not thought of until a person is in their early twenties (for men) or mid twenties (for women).

How many lives could be saved if we could recognize it earlier, and if health care were available to all? Here in the United States it is not. Insurance companies exclude due to pre-existing conditions and that made Colby ineligible 1) after he reached his mental health maximum as a teenager and 2) after his insurance company closed. Had those things not happened, I believe my son, my only child, would still be alive today. I would have a family. I would have a reason to celebrate the holidays. But that is not the way things turned out. For me. For other families, please know there is help out there. Check out schizophrenia.org for more information, and know that you can make a difference in the life of someone you love.