Tuesday, February 24, 2009

A Conversation at Death’s Door

The elevator arrived on the third floor. As soon as the doors opened, the glass door with the words, “Hospice Hospital” caught my eye. I couldn’t avoid it any longer. I had to make the visit to see my sister, possibly for the last time. I had lingered at home a little longer prior to coming and then stopped at the gift shop before going upstairs. I worried about what I might see.

My younger sister had sent me a photo from her cell phone, just two days ago. My sister, her face drawn, mouth open wide and eyes shut, looked nothing like I remembered just two months prior. Her bones protruded from her skin and had I not known she was living, I might have mistaken it for her death photo. Her hair was straight and shorter than I remember and I noticed that her hair color was still mostly intact, with only some gray showing. Still, she looked more like my maternal grandmother, than my older sister. The photo was sent to prepare me for what I would see, probably so I wouldn’t faint upon arrival. I am not very good with these kinds of things. Of all the things the photo wasn’t, there was still something missing. Something that I never realized prior to this, was that she always had a smile on her face. Funny, I had never noticed that before.

I opened the glass door to the Hospice Hospital. The door was etched with the words, almost as if you were going into a fancy spa; the only similarity between the two, might be that someone was there to take care of you, sort of. The hallways smelled of death which was in stark contrast to the fresh baked bread smell that I had in my apartment. I had baked a loaf prior to coming to the hospital in the morning. Not that she could eat a piece, but I brought one anyway. I know from my experience with Dear Son and from all of our hospital stays that sometimes the smell of a home cooked meal would go a long way. And today, well, a slice of bread was as close as I could bring to her.

The hospital personnel was quick to identify me as a visitor. Those were the upright ones. By the looks of things, there weren’t many visitors to be had. The patient doors, all wide open, were of people at various stages of death, all lying in nearly the same position, in the same hospital gown, with the same look on their face. Somehow, they all looked to be the same age, old. It was as if their individual disease somehow accelerated all of them to the same age. Almost like age progression photos, only in real time.

The first person that saw me was the social worker. While I may have had questions for her, I decided to see my sister first. The room was light. There was another person in the bed closest to the window; that lady was not coherent. My sister, lie in her bed, in what seemed like fifty years older than the photo my younger sister just sent two days prior. I would not have recognized her as such, had I not seen the photo. I was hoping my face wouldn’t relay the shock that I felt in seeing her although I am certain it did. Still, I tried to recover and greeted her nonetheless. I tried not to cry when I saw her, but it was hard not to. I am not a cryer. I was so worried I wouldn’t be able to see her before she died and now, well, my wish had been granted.

We had talked prior to Christmas about the, “Do Not Resusitate” (DNR). She had said they were pressuring her to make some decisions. Stubborn as she was, she wasn’t ready to admit that she was going to die, let alone give them orders. We had talked a few times prior but on that day, she admitted that she was tired and was not able to do a lot. The pain was constant and she could no longer walk from the sidewalk to the car. Getting out was exhausting, if at all. I talked about the DNR with her. I told her what I had learned about it from Big Academic Medical Center. She was clear that she wanted a DNR, as she no longer wished to go on, but she was having trouble signing it. They also wanted to start hospice but she had refused. After our call, she contacted them two days later and hospice began.

The similarities between her and Dear Son were striking. I was relieved that her brain was functioning today, although not as well as she would have liked. It was only yesterday that she was all drugged up; they did it purposefully since she fell earlier in the day, trying to use the washroom on her own. Another casualty of someone not staying with her; but there was nothing I could do. She said when I came in, that she asked them not to give her the medication today, because she wanted to be alert when I came, but she got it anyway. Her thoughts were fine but the execution was messy. It was difficult to understand her. She talked fast normally so the inability to speak and trying to get the words out faster, were challenging to understand. At times, she’d close her eyes because the words wouldn’t come out but the thoughts were there. It was like that many times with Dear Son. He’d try to talk to me but nothing would come out.

The patient in the bed next to the window had visitors. The curtain was pulled between the beds so she couldn’t see her, but I had a hard time listening since they were talking. I wanted to know if they were taking good care of her. I wanted to know if they were changing the sheets on the bed and keeping them clean. I wanted to know if they were treating her well and keeping her clean. She said they were. With Dear Son, I was always his advocate, making sure he had clean linens so I could make the bed, making sure all of his needs were met. With her, well, she was on her own. As she lie in her bed, I realized that this was it. She was going to die here. I asked if she missed her bed. I knew how much I missed my bed when I stayed at the hospital with Dear Son and she had been here since the 8th of the month. She agreed. I looked over to the other patient and was reminded of the story of the two men who shared a hospital room, with the drape pulled between them. Every day, the man with the bed on the outside wall would describe the children playing outside, what they were doing in the park and what kind of day it was. He would describe the weather and any other activity that was going on. One day, he died. After they took him away, the other man asked if he might have the bed by the window. The hospital personnel looked puzzled at his request. They explained that there wasn’t any window in the room. It was then the man realized that his roommate, made up the stories each day to pass the time. I shared the story with her, but left out the part about the man who died.

Lunch arrived and she struggled to eat. I offered to cut the food and to help her. She tried to put pepper on the food, thinking it was salt. I quickly realized that it wasn’t her mental capacity that was impaired but the fact that her coke bottle glasses were on the table and without them, well, she could hardly see at all. Someone less observant might have interpreted it as mental decline. Not to say that it would happen, it was just that she was fully present today, at that moment. As we talked, I asked her many questions. When it was difficult, she’d stop and close her eyes, frustrated that she could no longer get it together. I put my arm around her back and told her not to worry. She stopped, looked me in the eye and told me that I really ought to do this for a living. This, meaning care for people in her situation, because, “I was really good at it”. I said, no, that I didn’t have any interest in that. She said I should because I really understand and not many people do. I thought for a moment that I had Dear Son to thank for that. He taught me everything I knew about being compassionate. Even in her dying days, my sister recognized that.

Time went fast. She tried hard to be present during the visit but she was fading fast. She stopped repeatedly while trying to eat her lunch. She talked about how we were a family of fighters, that the disease might get us but that we would fight until the end. She laughed when she said it but there were tears in her soul. She never ate more than a dime sized portion of the entire meal and only one sip of soup. At one point, she wanted to save the bread I brought for her and an hour or so later, she asked to have some. I tore off a soft piece of it for her. The smell of the bread wafted to her nose and she closed her eyes as she took it all in. She said it smelled amazing. She took a small bite and then had some water. Fifteen minutes later, she asked for a paper towel, and spit it out. At least that’s what I thought. I know from my experience with Dear Son, that the smell and a taste of food can be glorious, even if you can’t swallow it. He lost his ability to swallow some time ago but a taste, well, every so often, he gets a taste, and he loves it.

It wasn’t long before our visit was over. I had to get back in time to get Dear Son off the bus. My sister thanked me for coming and told me not to worry about anything. She said I was put here to take good care of Dear Son. I held her hand, kissed her goodbye and left the room. I thought about stopping to talk to the social worker and then nixed it. There was nothing to be learned by reviewing her medical history. She had colon cancer and the cancer was winning. There wasn’t anything that would change the course and nothing I could get involved in at this late date. I wondered if I would regret asking some questions. As I pushed the elevator button to go down, I remembered one of her last questions. She wanted to know if they had cleaned out her place yet. I said no, no one has done anything yet. I told her it would all be there when she got home. I pushed the elevator button to go down, knowing I told her what was probably a little white lie…I knew she was never coming home. And so did she.

Saturday, February 21, 2009

Update

I wanted to apologize for the delay in postings. I have been extremely busy working this week and there has been some family issues. My older sister has colon cancer and is dying. Recently, the cancer had spread to the other organs, namely the liver, lungs and now the brain. She has been in and out of the hospital a lot since Thanksgiving and started hospice around Christmas. They said that she is deteriorating fast and expect that death is imminent (2-30 days tops). They have told us to begin funeral preparation.

I spoke with her briefly on Thursday evening and the confusion has set in. I could no longer understand her words. It was probably my last conversation with her. It has been difficult imagining that I will not be able to speak with her again. Family members visited today. I will not be able to visit until Monday or Tuesday, once Dear Son is back in school. I can not get out with him on my own anymore without a wheelchair van.

We have a strong history of colon cancer in our family. My mother had colon cancer and had surgery to remove it; she has been cancer free for five years now. My aunt (mother's sister) died of colon cancer last year. She had it twenty years prior and beat it and it came back and she died last year.

Dear Son continues to do well in school and seems very happy however he has been experiencing some severe choking episodes at night making it difficult for him to sleep. I have been up with him almost once an hour every night for the last week and am worried he is going to aspirate. I am not clear as to whether the choking is a result of seizure activity or more deterioration however I remain concerned since the Scopolamine patch he has been wearing to dry up secretions does not seem to be impacting these episodes. I worry that if this continues, we may need to try other more invasive procedures. He continues to have issues with seizures as well outside of these episodes.

As for writing, I have been unable to focus on blogging with this activity. I have attempted to write however I can't seem to concentrate very well with these issues.

Thank you for your continued interest in Dear Son.

Thursday, February 19, 2009

Tablescape Thursday-Mardi Gras Tablescape

"Mardi Gras Tablescape"


Photo Courtesy of "Confessions of a Plate Addict" blog.

Recently, I found some new blogs that I really like. I must confess that I absolutely love fine bone china. I have a few sets but I have never been able to pass up looking at new china. Anyway, I have found a group of blogs where these women focus on creating beautiful tablescapes for their homes. It's a way to indulge my love of china but also to see how people used them in their homes. But it's not just fine bone china that they use, they use all kinds and it still looks wonderful. I just love seeing how they are used in the home. I think I would like to come to this party.


Notice the "mask" pick with the napkin.


Photo Courtesy of "Confessions of a Plate Addict" Blog


The Mardi Gras beads in the hurricane.


Photo Courtesy of "Confessions of a Plate Addict" blog.

Today is Tablescape Thursday, hosted by, "Between Naps on the Porch" blog. If you click on this link, it will take you to all of the wonderful tablescapes that people created today. One in particular, caught my eye today. It was the Mardi Gras tablescape created by, "Confessions of a Plate Addict".

Notice the harlequin necklace around the hurricane.



Since I didn't have new content today, I wanted to share with you these lovely tablescapes. I have a full work schedule this week but I should have a new post tomorrow.

Saturday, February 14, 2009

Seventeen Years Later, the Question was Answered…Talking or Walking…Which was More Important

I remember the therapy visits when Dear Son was young. Toddler to be more accurate, but somehow calling a child who can not walk a toddler, seems a bit like an oxymoron. I had sold our house so we could get therapy services at Major Pediatric Therapy Place, which was located across state lines. Without being a resident, we couldn’t get them and the state we lived in, didn’t have enough services to meet his needs. Dear Son would need intensive physical, occupational and speech therapy to reach his full potential.

Major Pediatric Therapy Place was designed for kids like Dear Son. His favorite of the three services: physical, occupational and speech, was always physical therapy. Of the three therapists, he always had a ready smile for the physical therapist, because he knew they would work on walking. She would try to work on trunk control or other areas that he would need to walk, but Dear Son would have no part of it. He’d refuse to cooperate until she worked on just the walking. He was so proud.

Dear Son was a sweet young man. He was only three when he started school. His first classroom consisted of six young girls, himself and another boy. The girls were all enamored with Dear Son so much that the teacher nicknamed them, “Dear Son’s Harem”. Dear Son loved being with other kids and people liked him. It didn’t matter that he couldn’t speak, because he could get his needs across in other ways, like gazing at an item or smiling. Those worked just fine.

Different times when he was sick, I wished he could talk. It was hard not knowing was what wrong. For the most part, I learned to figure most everything out. I could tell when he was hungry, when he was full and when something was wrong. But still, talking would be great. I longed to hear his voice since I didn’t know what it sounded like. And to hear “Mama”, well that would be the icing on the cake. It was many years before I’d hear it for the first time and then many years before I heard it again.

Over the years, his Dad and I would often have the conversation on which life skill we wished he could do. Talking and walking always came to the top of the list, as if he could have only one and as if our wish, once selected would come true. As the years went on, we would just about have our decision made, and something would happen, and we flip flop to the other one.

When Dear Son was ten, I found a daycare center for him. At the daycare center, he blended in easily. Even though he could not walk or talk, the kids loved him. He’d sit outside in the dirt hole and play until I got there. One day, I mentioned to him that I bet the kids would be impressed if they seen him walk in his gait trainer. His face lit up and then he bowed his head down and licked my hand. That was how he gave me a kiss. Whenever I said something that he was thinking, he would kiss me as if to say thanks. The gait trainer was normally left at school, since it was so large; as a result, he could only use it there and never at home. We took it to the daycare center and I strapped him in. He stood up straight and practically ran in the gait trainer to show the other kids that he too could walk. Most of the kids were younger, say two to six years old and were not impressed, but Dear Son was so proud. It was like he was a new man. At that time, I wished he could walk.

Another time, I came to pick him up at the daycare center around Christmas time. It was almost six o’clock and I had rushed to get there on time, so I would not be penalized. A little boy grabbed my hand and told me he had a dream about Dear Son. I knelt down so I could see his face when he talked to me. He told me that in his dream, he was standing in line to see Santa when he saw Dear Son. He said that Dear Son could walk. I was caught off guard by the little boy and his dream. To think that Dear Son’s walking was on this little boy’s mind so much that he would dream about Dear Son, was special. Upon completing the story to me, the little boy said, “I wish Dear Son could walk.” “I do too,” I said.

But a few weeks back, he went in for extended EEG monitoring. The EEG was very active despite the fact that Dear Son didn’t show any real outward movements, that might indicate a seizure. The Attending Physician was quick to point out that Dear Son had no seizures despite the activity on the EEG. In fact, he didn’t mention the EEG at all. He simply said that there weren’t any seizures. Dear Son’s Ped Neuro Doc, who also read the EEG, said the EEG was very active. He felt that he should treat Dear Son and elected to increase his Vagus Nerve Stimulator (VNS). The VNS would be increased to the “rapid cycling” mode to combat this electrical activity. I felt relieved that Dear Son wouldn’t suffer and hoped the new speed would help.

As Dear Son matured, he no longer shakes as much during a seizure, instead he cries or yells out, getting louder and louder until finally a tear rolls down his cheek. This didn’t happen during the testing, but the fact that it does happen tells me that Dear Son does feel some pain. On the third day, he was released from Big Academic Medical Center. I was told that someone was coming to check the VNS, to make sure it the new settings were accurate but no one ever did. I felt uneasy leaving the hospital, since the nurse who changed the speed on his VNS, was not our regular nurse. In addition, she seemed to change the settings differently, from the way our current nurse did it, and that didn’t help. I was very uncomfortable.

Upon arriving home, I did a bit more research. I was puzzled by the sudden discrepancy in the definition of a seizure. I learned that unless the patient shows physical signs of a seizure, it’s not defined as such, regardless of the EEG. Knowing that, helped me better understand the difference between the two physicians. I was a little peeved to think that the other Attending Physician would not have treated Dear Son given the circumstances. I mean, if the EEG is very active, then I would imagine Dear Son would feel this, regardless of whether or not he showed outward signs. But not being able to ask him, well, then, it was just a guess.

The internet, provided more information on the VNS and rapid cycling. It wasn’t until I read some of the comments under the discussion sections, that I became really uncomfortable with the VNS. Some people who had the VNS implanted, described tiny shocks, like bee stings, over and over again, from the device malfunctioning. In one case, when a woman complained to their physician, he checked the device, determined it was fine and sent her home. When she continued to complain, he ignored her and soon, neither the physician nor the manufacturer, would listen to her. In other cases, the shocks were so bad that they taped the magnet* to their chest. Others wrote in that when they upgraded to the new model, they had issues with the device malfunctioning. I soon became sick to my stomach. Rapid cycling, involves a seven second shock** and then the device is off for thirty seconds, then shocks the patient again. When the thought that the device could malfunction and hurt Dear Son, I felt sick to my stomach. I mean, if the new rapid cycling, was hurting him, giving him shocks, I’d never know. Our next office visit wasn’t for another two months.

As Dear Son lay in his bed that night, he’d squirm different times and get this funny look on his face, and I would wonder if it was hurting him. I tried to talk to him about it, in a positive way, and told him that they increased his device to help get rid of the seizures. I asked him how he felt but I couldn’t ascertain anything.

It was then that I had my answer. I knew that I wished he could talk. In all of the years I wondered, which life skill would be more important, I knew I had my answer. While walking made him feel good, the thought that he might be in pain or even “shocked” by the device, seemed horrific to me. Some time later, my rational brain kicked in, and I reminded myself that the VNS he had, had worked well for him and the incident of malfunctioning was small and ….

----

* The magnet turns off the VNS, which is implanted under the armpit.

** The shocks or charges go to the vagus nerve located in the patient’s neck and the charge, for unknown reasons, disperses the seizure. When the device functions correctly, I am not aware that the patient feels this and most of the patients from what I read, feel it is very effective. In Dear Son’s case, he has had the device implanted since 2004 and it seems to work fairly well for him.

Dream Mom 3 Year Blog Anniversary

Thursday was my third year blog anniversary. I can't believe it's been three years since I first started blogging and wrote my first post. If you would have told me that I would still be blogging three years later, I would never have imagined that. It's been amazing and fun over the years. I appreciate your interest and love for Dear Son.

To celebrate, I'd like to re-print one of my very first posts. I've written a new post, which I'll publish tomorrow, that relates to this one. Call it pre-requisite reading, if you like.

As I mentioned last week, I will continue to write about Dear Son and also some new topics. I wrote briefly about organizing and pulled all of the posts last night, because I didn't feel the interest was there. I wasn't getting any comments. So I am going back to my roots and writing mostly about Dear Son. I am going to try to dedicate more time to writing. It's been really hard though, compared to previous years, because I don't get much sleep. When I don't get a lot of sleep, it's hard to do creative things like write stories, because my brain doesn't function as well. Most writers will tell you the same things. My best stories always come after a full night's sleep. When I get less, they tend to be somewhat choppy and that's unacceptable. I usually won't publish those. Writing stories about Dear Son, takes a lot more effort than writing a post on a particular subject.

As for Dear Son, he continues to deteriorate physically but mentally seems really happy when he's engaged in "adult" activities at school. This year the focus is on age appropriate activities. His sitting days however are getting numbered. For the most part, he no longer has any trunk control to make sitting a possibility for much longer.

We also have a surprise to share with you in a few weeks. Gary, from Tendercare Beds, is making Dear Son one of his beautiful beds. I look forward to showing it to you.

Thank you for your continued interest in Dear Son.

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Once is Not Enough-Reprint from 2/21/06

I was still sleeping when I heard his voice. At first, I couldn’t believe it. Was I still dreaming? It was the kind of voice that is forever embedded in your memory. It was soft, sweet and yet from the heart, the kind you never forget. Kind of like hearing a beautiful aria for the first time, the kind that sends chills down your spine. The kind where you desperately hope for an encore but it never comes. I waited quietly to see if I would hear it again, however it was not to be.

I remember the first time I heard his voice. It was years ago. He never talked at first. It seemed like I was talking to myself for the longest time however I knew deep inside, he understood. Our conversations, if you call them that, took place round the clock. Always one sided of course, but you could tell by his smile that he “got” it.

So today was wonderful. His voice was much deeper now, more manly. But oh, so sweet. It was only one word though, “Hi”. I called out to him and asked him to repeat it but I heard nothing. I waited some more and then asked again. Still nothing.

I got up and went to his room. There in his bed, was my son, smiling. He’s fourteen now. It’s been years since I’ve heard his voice. But this morning I woke to the most beautiful sound, “Hi”. I kissed him on the cheek and said the same words that I say every morning, “Good morning, beautiful doll”. I thanked him for saying “hi” not knowing how much time would pass before I would hear it again, if at all. Our days are growing longer and much quieter now since he sleeps most of the time.

His Dad and I speak daily. Sometimes we have the conversation on which life skills we wish he could have, if we had to choose only one. Talking and walking always come to the top of the list, but we can never figure out which one is more important. Would it be more important for Dear Son to tell us what he needs and wants or more important for him to run and play with the other boys? Our conversation is the type you have when the lottery stakes get really high and the news people ask people what they would do with the money if they won. Only it’s not a lottery and we are never going to win.

Sometimes, I dream of the conversation that my son and I will never have. I would love to hear about his day in the first person instead of reading the day’s events in the spiral notebook attached to the back of the wheelchair. Sometimes, when I am out somewhere, I envy sometimes the excitement of boys talking to their parents telling them about their day. I envy them when they are arguing too because some language is better than none. They don’t know it of course, because they are blessed. As it should be.

Wednesday, February 11, 2009

Happy Valentine's Day!

Today, we are having a Valentine's Centerpiece Party. Cindy, from "My Romantic Home" is hosting this. Beginning Thursday morning, there will be links from her website to everyone that has created a Valentine's Day centerpiece or February centerpiece.
If you are a Romantic Home Blog reader, thank you for stopping by. I am Dream Mom and I write stories about my seventeen year old severely disabled son, organizing and anything else that is going on in our lives.
Dream Mom's Valentine Centerpiece



















About the centerpiece:
  • I purchased the red "love" placemats a few weeks ago. The rest of the items were things I had around my apartment.
  • The red ceramic container the roses are in, was originally a Christmas gift. It was filled with chocolates and came with a lid. I originally put it in my box for Goodwill donations, however I decided to use it for a vase. I took a cherub Christmas ornament and glued it to the box.
  • I love to use white roses in my apartment. I have them in a crystal vase in my living room and in my master bedroom, I have them in a beautiful depression glass bowl on one of my nightstands. For this centerpiece, the roses are silk however real roses could have been used. I much prefer real flowers though.
  • The ecru placemat is a vintage hankerchief that my mother used at her wedding. I've had it for many years and could never figure out where to use it. Since I wanted to create a feminine centerpiece, I knew this would be perfect.
  • The candles I had since I use them often for dinner.
  • As an added touch, I hung two cherubs ornaments with crystals from the chandelier.

I had hope to create a "Flickr badge" to make it look more professional. I worked on that for quite a while but could not figure out how to get it working. I created the sets, linked it to the blog, but ran into problems connecting it to the groups. I confess to being technically challenged however the Flickr directions could be improved! Finally, I deleted it since I didn't have more time. Sigh.

Thank you Cindy for doing this. It was a pleasure to take time last weekend to be creative and put this together! Click here to return to the "My Romantic Home" blog to view more centerpieces.

Sunday, February 08, 2009

The Bed

I was kind of surprised when I read her post. The bed, that she described so eloquently, provided exactly the function as my own. She wrote,

“…little did i know of the many days i'd lay on it overwhelmed by life's circumstances, physically drained from caring for my daughter disabled with cp, and alone, as a single woman, a single parent disabled by rheumatoid arthritis and obesity. This is a mahogany four poster bed with pineapple finials topping each post. It is a huge bed sometimes shared by my oldest daughter where she empties her heart to me, tells me how much i mean to her, and where we giggle and laugh together about silly inane things.”

Of all of the things that I own, my bed, in it’s king size glory, provides the most comfort. I had purchased the mattress right after my divorce. It seemed like a good feng shui kind of thing to do, I mean, a bed would signal a new beginning. I had purchased the mattress, when I still had the corporate job. I went to a higher end retailer and checked out all of the mattresses. Instead of looking at any of them by price, I decided to find the one that was the most comfortable. Once I did that, then I would check out the price tag to make sure I could afford it. I selected a luxury mattress, for it’s firm support, eight way hand tied construction and over a thousand coils for back support. The luxury mattress did not disappoint. I added a featherbed on top of the mattress and then some luxurious sheets. It was and still is the most comfortable bed I have ever slept in. Little did I know the bed would provide me with more than a good night’s sleep in the years to come.

About a year after purchasing the bed, my job ended along with some seven hundred others at our company. The bed, would become my haven, soothing my tired ego when I couldn’t find a job. Little did I know that once I did find a job, I wouldn’t be able to work since there wasn’t any daycare to be had, for someone like Dear Son. I was then back at square one.

Over the years, my bed would comfort me when I would lie there from exhaustion. I remember when Dear Son was younger, prior to the VNS (Vagus Nerve Stimulator), he would have seizures all day and night. I would try to keep my eyes open but at some point, they would refuse. At that point, my eyes would have to defer judgment to my hands. It was there that I would hold Dear Son’s hands, his chunky fingers in stark contrast to his reed thin body, and when they would shake violently, I knew he was having a seizure and I would wake up and attend to him. If it weren’t for the big bed, I couldn’t have done that.

A few years after that, I remember my bed providing the support I needed, when my spirit was depressed. Between caring for Dear Son and missing the income of a full time job due to a lack of daycare for the disabled, my heart was heavy wondering if life would ever get better again. I missed working and I missed having money. People would say that the Lord doesn’t give you more than you could handle however I remember praying one night, that he would make it easier for me, since I could no longer handle all of the hardships. Within the next two weeks, things changed and some good things happened. But it was my bed that carried me through.

I remember too the days and weeks after my back surgery. I had to sleep in my living room chair in the months up until the surgery, because the pain down my leg was so severe. In the chair, there was one position, that if I sat perfectly upright and perfectly still, the pain would lessen. After the surgery, I would lie on my bed and be thankful that I had such a good mattress. It made my recovery go faster.

Today, my bed still provides much comfort. Caring for Dear Son is a twenty four hour a day job and to do it well takes a lot. Owning a business on top of that and keeping everything clean and organized, can be a lot some days. Most of the time, I am looking forward to my free night, every other weekend, when I get twenty four hours of uninterrupted time. I retire early, mainly from exhaustion. To be able to sleep and not have to get up to give medications, to start a feeding pump, to change a diaper or to roll Dear Son over is a blessing. It’s not that I don’t love him, because I do, but everyone needs a good night’s sleep in order to continue to provide a high level of care. On those weekends, I always sleep in, getting up at 7 a.m. and going on-line and then retiring back to bed for a few more hours. My cat knows the routine all too well. Sometimes, I’ll even watch t.v. in bed since to be able to lie there and do nothing is the ultimate luxury.

So reading that this mother of a special needs child would find comfort when life was overwhelming and be comforted when she was physically drained, made me realize the importance my own bed had become in my life. Her description was perfect and I wondered how many other mothers of special needs children felt the same way. We are so blessed to have these children in our lives and I’d never be able to function without my beautiful Dear Son. But our beds, well, they are our back up. They are the Plan B. They are our support when we have no one else and nothing left to give. They are a place to restore our tired feet and souls so we could get up another day and take care of our children who love and need us so much. As for the other mother of a disabled child, I am sure we are part of some secret underground club, where the password is “sleep”.

Friday, February 06, 2009

Dream Mom Blog Enhancements!

You may have noticed several changes over the weekend to my blog. I’d like to take a minute to tell you about them.

New Template! By now, you have noticed the new green template. I was forced to change the template this weekend in order to take advantage of some new blogger features.

Wikio Universal RSS Feed! On the top right hand corner of my blog, you will notice a “subscribe” button. This button allows you to add my blog to whatever RSS feed (news aggregator) that you use. In simple terms, any time I write a new post or update my blog, you will be notified or get the new post on your RSS feed. Once you click on it, several choices for the RSS feed will come up.

More On This Topic! On the right side bar of my blog, you will notice a heading called, “More On This Topic” that has links to some of my previous posts and other posts on related topics. This is a result of a new feature to my site called, “Pluck on Demand”.

In 2006, I received an invitation from Pluck Corporation to become part of BlogBurst, the world’s largest blog syndication network. Recently, Pluck Corporation introduced a new product called, “Pluck on Demand” which uses simple widgets imbedded in my site, to bring you related articles, videos, and blog posts from leading sources. When you click on a related headline link on my blog, a new page is generated within my blog where the full article, post, or video can be viewed. These articles are pre-packaged with display and video advertising which can earn the publisher and myself revenue. This is not unlike the Google ads, which earn the blog publisher revenue. To date, I have not earned any revenue from this blog, so that would be nice. (I have no idea what that means, in dollar amounts, but with Google ads, the amounts were marginal.)

My blog, “Dream Mom” was selected as a beta for this new product. To add Pluck on Demand, required that I do a few things. The first was to update my blog to a new template. The new template included upgraded layouts and HTML code which allowed me to add the widgets. Adding the widgets required a blank post called, “Related Content”, which you saw on Saturday. In the background of that page, was the code required to do that. Now when I write a post, other posts, articles, video and ads will appear under the heading, “More On This Topic”. I have no control over that content and the content may or may not change when I write a post since it matches on content.

New Links! I updated the links section to include some new blogs that I like. Some of my favorites include: My Romantic Home, Hillbilly Housewife (love that name!), Productivity 501, Unclutterer and TenderCare Beds. Cindy writes My Romantic Home and never ceases to amaze me with all of the projects she does to make her home more beautiful. She takes flea market finds and makes them into treasures. She takes exceptional photos and it is truly a pleasure to visit her blog to see what kinds of things she has for us every day. Her home has been featured on HGTV's "Rate My Space". Susanne from the Hillbilly Housewife has a recipes section on her blog that is pretty good. She takes time to explain cooking terms which is helpful for a novice like me. Productivity 501 is an excellent blog that is vastly underrated. There are so many great articles and content that I can't say enough good things about it. One of my favorite blogs is, "Unclutterer". It's a blog that discusses things related to organizing. Of course, I would love that. It's a great place for us "born organized" folks to hang out and comment on our organizing systems. There are also all of the old favorites from Fat Doctor (who recently adopted a little girl) to Poppy Q, the world's most beautiful cat! I hope you enjoy some of the new reads!

Additional Content! Finally, you’ll be seeing some new content from me this year. While I adore Dear Son, I don’t have enough stories to fill all of my posts. I will continue to write stories about him but will also expand my postings to include other topics that are of interest to me and hopefully to you, but also posts that are timely to a publisher. An example of this post, would be the previous one with regards to, “Best Things About a Recession”. I've been quite busy with work related projects this week so I'll try to be a bit better about adding more moving forward.

Thank you for all of your support. I hope you will enjoy the new content.

Sunday, February 01, 2009

BEST THINGS ABOUT A RECESSION

It’s pretty interesting to see the changes people are making in light of the recession. People are spending less, reassessing their priorities, working harder to keep the jobs they have and basically having to chose, some for the first time, between luxuries and necessities. It is interesting too, what one person defines as a luxury, is another person’s necessity.

In many ways, I am able to sit back and feel fairly calm these days. I learned many of these lessons and had to make many choices several years ago, when I too was the victim of a massive corporate layoff during the last recession in 2001. The difference was, that a lack of any kind of daycare for severely disabled children like Dear Son, meant that my corporate life was essentially over. In the meantime, I learned many lessons. There are many things that I wouldn’t change, even if I were to return to work full time. I have come to enjoy many of these changes. Instead of focusing and listing everything I lost, I thought it might be interesting to focus on what I gained. I thought it might be interesting to share them with others who are going through similar times. So here goes:
Photo of my kitchen at my former house.

LEARN TO COOK One of the first lessons I learned was that I could no longer spend a lot of money at the grocery store. I also learned that the easiest way to stretch a dollar was to cook everything from scratch. Sure I could have used some coupons, but most of the coupons are really for processed foods. At that time, I scaled my grocery bill down to $40 a week, for Dear Son and I. That meant processed or convenience foods of any kind were out of the question. Over half was for fruits and vegetables and the rest was staples to make everything else. I began to watch the Food Network to learn how to cook. I watched it religiously for six months, trying out tons of new recipes from nearly every chef. I soon learned which ones I liked best. Once I did that, I began to read about the super foods and learned to incorporate more of them into our diet. It was amazing how much more energy I had. Soon I started going to the farmer’s market and purchasing fresher food that was more local. We ate very well and he especially loved all of the home cooked meals. I consider that such a blessing today now that he can no longer eat. If I hadn’t done that, I would missed out on all of the wonderful memories today. Although Dear Son has lost his ability to swallow food, he still remembers the good meals.

Today, I still make nearly everything from scratch and am always looking for a something new I can make. Making your own food tastes a whole lot better and there isn’t anything in there that you can’t pronounce or that you need to worry about. Just recently, I got a new breadmaker for Christmas, the Zojirushi Mini Home Bakery which makes one pound loaves of bread. Now I make my own flaxseed bread, hamburger buns, jam and soon I’ll try making the pizza dough. I found a recipe for homemade ketchup in my bread cookbook so I give that a try.

SIMPLIFY. I love paying bills every month because there aren’t many. Just rent, insurance, utilities and that’s about it. Once you begin to simplify, it’s amazing how much time is freed up. Paying bills on-line is even easier, taking only seconds and no time at all if you set up your payments to go out on a certain day every month.
Photo of my apartment door in my 750 square foot apartment.

DOWNSIZE. At first, it was difficult. I went from a 1750 square foot home to an 1100 square foot apartment to a 750 square foot apartment. I got rid of a lot of stuff. Gone are the multiple Christmas trees, Christmas tree lights and all kinds of stuff. What’s left is easy to care for and things I love. More important is the time I gained. I can’t believe how much time and energy it took to keep everything clean and maintain all of that. It’s so much easier now. Learning to live simply and elegantly feels good. Photo of Dear Son's simple hospital bed.

LIVE WITH LESS. Living with less is easy. There is less to clean and it’s less expensive. There is only one toilet to clean instead of three, only one car to drive and maintain (and it’s small at that) and fewer clothes. Living with less, doesn’t mean you still can’t have nice things. In fact, it’s often quite the opposite. Think fewer but nicer.

WASTE LESS. I am almost ashamed to think that I used to throw out leftovers. Now, I make less and waste hardly anything. I learned how to freeze foods and make single serving quantities of things.

SPEND AND CONSUME LESS. Sure it’s better for the planet but the real reason I consumed less is that I couldn’t buy as much. The best part about consuming less is that you have a lot more time on your hands. Buying less means less to maintain, less to process (no need to spend time putting away all of those items when you get home) and more time to spend on the things you love. I got a library card and started checking out books at the library instead of buying them all. Now I still buy books, but only after I have read them and only if it’s a book that I love and will read again.

MORE FAMILY TIME. I spend a lot more time with Dear Son now that I work less hours. It’s great to be able to spend time with your kids. I doubt he misses the finer things. I know that he would miss his Mom.

Kitchen "after" photo, staged by Dream Organizers.

START YOUR OWN BUSINESS. I really loved my former career but at some point, not being able to find daycare for Dear Son meant I could no longer work full time. I needed to let that go. I never wanted to start my own business however now I have a small business that I love. I do what I love to do and I work around Dear Son’s schedule. I spend more time with him and yet I am able to keep a roof over my head.
Photo of my patio at my former apartment. A nice place to relax.

TAKE TIME FOR YOURSELF EVERY DAY. I remember when I worked full time, there were many days when I hardly had time to go to the bathroom. Every second of every day was filled to the brim so I could get everything done. Now I am certainly busy, but I’ve learned to take a few minutes to myself every day, to keep me centered and calm. I’ll never get sucked into a lifestyle where I can’t find three minutes to myself every day.
The walking trail near our home where Dear Son and I walk most days in the summer.

GET HEALTHY. Learning to cook was part of it. Not having access to health insurance was a driving force. I eat better and exercise more now that I have more time. When you pay out of pocket to see a doctor, you eat a lot better and take care of yourself better so you don’t get sick.

BEAUTY COMES FROM THE INSIDE OUT. I learned that beauty comes from the inside out, not the outside in. When I worked full time, I could afford expensive cosmetics. Once I scaled down my lifestyle, I learned that when you provide your body with optimum nutrition, water and exercise, you can skip the expensive wrinkle creams. You can’t purchase good skin in a bottle.
Photo of Dear Son-13,5 years old.

COUNT MY BLESSINGS. Not a day goes by when I don’t count my blessings. I start all of my prayers by being thankful for what I have. I never realized how blessed I was until my situation changed. Now I am thankful for my lovely Dear Son and everything I have. I have learned that no matter what I am going through, there is always someone that is having a harder day and needs my help or my prayers. I have learned that sharing my blessings and good fortunes with others, especially those who need it the most, is a privilege and a blessing in itself.

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