There have been four times in my life when I have been REALLY sick. Sick enough to think about mortality, even if I knew that probably was not going to happen. Sick enough to take more than a week to recover.

The first time I was eight. I had a horrible case of strep throat that kept me out of school for three weeks and in the hospital for one week. I was actually probably too young to think about mortality then, but I remember my dad threatening to make me eat potato chips if I did not drink enough pear juice in the hospital. (Pear juice was the ONLY thing that did not feel like it was ripping my throat to pieces as it went down.) I think my parents might have been a little worried at the time.

2008-12-05bouquet

The next time was twenty years later. I had just moved into my first house with my first husband. It was December, and I got the flu. The BAD flu. I do not believe I had ever had that before. I suffered a week off work without getting any better and finally realized I was not going to get better, and I needed to go to the doctor. I did not care if I lived or died. I lost 15 pounds in one month, and it was a full month before I could work full days.

Ten years later I was pregnant with Chicklet. That little creature sucked everything from me. She took every nutrient and bit of strength I had, then she took my immunity. In a 7-month span I got three sinus infections, three stomach flus (more than I had had in my entire life before that), and the BAD flu. Most days I worked as much as I could in the morning and lay on the sofa all afternoon. It was not a good time. My midwife did not really believe I was sick. She treated me like I was trying to get drugs. (Twice in this time I got to see a doctor who was kind, understanding and gave me medicine to get through the current problem.) A week after Chicklet was born, I was in nearly perfect health. She was not, and I have to think it was because I was so drained that even though she took everything from me, it was not enough for her.

2008-12-05lily

It has been five years since then and I am really sick again. (For those of you who are into numbers and trends, are you as frightened as I am about what is going to happen to me in about 2-1/2 years?) I have “severe” esophagitis. I noticed it a week ago yesterday when we were headed out of town. I could feel (and it was uncomfortable) every bite of food that I took from the swallow until the opening to the stomach. It got progressively worse over the weekend to the point that Sunday I did not want to eat. When we got home Sunday night I ate a small amount because I knew I needed food. I have not eaten more than 300 calories in a day since last Saturday, and the 300 calories is a HIGH number. I have only done that a couple times. (Thus the title of the post–which I must say is the silver lining to this problem.)

Eating is painful. It is usually not a burning pain, but a pain that grips my whole chest and radiates to my back and into my neck  and ears. This happens for anything swallowed, even a drop or two at a time. This has created another problem in that I am not getting enough nutrition and am incredibly weak. The problem with this is that my life is busy and it is the holiday season and I have more going on that usual.

My stamping business is somewhat intentionallybusier than usual for December. Last Thursday evening I had a workshop and Prince Charming arranged a babysitter and did it for me. I went with him, but mostly just sat with the guests and heckled him. Thank goodness for him because I would have been in bad shape had I done it alone. My personality would have made me suck it up and put on a brave face, but I probably would have collapsed in the car when I left.  Tomorrow I have another one, and a friend (who is assuming the role of my mother at the moment) is going to fill in as Prince Charming did. I will go, but she will do the presentation for me.

2008-12-05mum

This friend has made me face humility in other ways. Right now I am home when I normally would be headed to church. She insisted that I stay home while she takes over leading the program for the 4-6-year-olds today.  I am so grateful for this because I am weak and tired, and tonight is our church’s biggest annual event, the “Festival of Lights,” a holiday musical program. I am planning on pulling all my strength together so I can go. The music is always incredible.

Which leads me to the other thing this friend did for me and is making me be humble. Who would you guess makes the programs for the Festival of  Lights? Of course it is me! Last year was the first year I did it. I made 500 of them. We used less than 400, however, so this year it was decided to make 400. Not because I procrastinate, but because I have so many things going on in my life, those were not finished when I got sick. Another friend had volunteered a couple of weeks ago to do part of the stamping, so I allowed her. I had done a little more, but with my schedule and being sick, I just was not even close to being finished. My motherly friend (who is only a few  years older than me) decided that she was going to take an afternoon off of work to help me with them. Her daughter called, and she came as well. The two of them finished the program covers on Thursday afternoon. THEN yesterday morning, another friend and her mother-in-law came and helped me put all the inserts (with program information) on the inside. The programs are finished, and I probably did the minority of the work. (Prince Charming is proud.)

2008-12-06folprograms2

So why am I sitting her painfully sipping  liquid nourishment to tell you this? Somewhat because I am weird like that, but mostly to explain my absence in visiting you. The only reason I have posted this week is there were time sensitive (to me) things about which to post, or I would have been completely absent.

When I went on a trip in October, you know I got way behind in blogging. I was slowly catching up with my visits, but then we went on last weekend’s trip. Now I am sick. I have not looked at my reader much at all this week. I am sure it is over 1000 again. I am going on another trip next weekend to visit my cousin. I am coming to grips with the fact that I may not catch up on the reader at all. I may just have to start with what is current when I can do it again. I may not be able to return every visit here. My personality tells me I must, and I will definitely try, but I am not just a little sick, and I have a whole lot of other life that needs attention in the moments when I can get up and do something.

Thank you for your visits even when I have not been visiting. And this post was definitely not for you to feel bad for me or wish me well, but only to tell you why I am gone and that I will be back when I can. Having not eaten substantially for a full week and likely not to be able to for another few days (the doctor said it would take at least a week from when I saw her last Wednesday for the esophagus to heal), my recovery is probably going to be slow. I will probably be weak and tired for a long time.  I will come when I can.

Incidentally, this is my 100th post. I had determined not to even mention it when it happened, but I find it amusing that this is the topic for my 100th post. And I probably would not have noticed it, but when I got online this morning, WordPress had changed their screens and the number of posts I have published was right in front of my eyes.

The flower pictures are a bouquet Prince Charming got me this week. I love them. They look like an antique painting to me–not really real. I think I will be surprised when they wilt.

2008-12-05sunflower

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Moon when we arrived at my dad's house on December 4, 2006

Moon when we arrived at my dad's house December 4, 2006

I have warned you that there is a 10-day (actually 11 if you count the first day) of family events in my life about which I will post. Today’s is the fourth of five. Tomorrow will be the last one.

This one is the toughest because it is not a happy topic, and most of the time I am a pretty happy person. I tend to look on the bright side of things and make the best of the worst circumstances. This story does not really have a bright side–or at least I have not been able to find much of one. And also, there is no way to tell the whole story at once which is why I do not know how to say it; there is way too much to say.

This is about my mother’s death. I have thought long and hard about why I want to tell her story, and I have come up with some reasons; however, I am not positive they are reasons to tell it. I believe there are things to be learned from her illness and death on many, many levels for any type of person, and that someone needs to tell her story because she could not.

My mother died on December 3, 2006, 9 days after her 65th birthday. She had been in Hospice care since October of the same year. My husband, my girls and I visited for a few days in October, then I returned with the girls for two weeks in November. Had she survived, I would have returned in mid-December.

When she died, she weighed about 80 pounds. During her “good years” and even during most of her illness, she had been overweight. She was tall and big-boned, so she carried her weight well. She was active, too, so that helped, but she was never thin in my memory of her. For her to be reduced to 80 pounds was a horrendous thing to see. She also had several bedsores, the largest of which was more than an inch deep and was about 10″ long and 5″ wide. (Once we brought Hospice into our lives, they provided a different mattress that we could  not procure before, and there was slight improvement in the bedsores before her death.) She had little ability to show emotion, and when these awful wounds were dressed two or three times daily, she could not cry or moan or move away. She sometimes flinched almost imperceptibly.  My worst memories may always be the witnessing of the changing of dressings. I never personally did it because I did not live there and was not accustomed to it and did not want to learn how to do it when I might hurt her more than those with experience.

So what killed her? I have mentioned before that she had been declining for ten years prior to her death. About 8-1/2 years before she died, she was hospitalized with seizures. This event was a turning point downward for her. It would be weeks before we knew what caused the seizures, but she never got better after that. For a while we believed she would get better. Some days were better than others, and we clung to those threads of hope as if they were our lives. I do not remember when it happened, but one day we all sort of realized that she would not get better, that we had to enjoy each day for what it was and make the best of it, because that might be the best day we ever got with her.

So the seizures did not kill her, though sometimes I wondered why they did not and wished they would have so her life could have ended quickly and painlessly rather than the many years she suffered afterwards. But we did realize along the way that although her quality of life was not what she wanted or would have chosen, it might have not been as bad as it seemed at times.

After the seizures, she began talking less and less, and within three years, she did not talk at all. Either the seizures or what caused them affected the part of her brain that houses the “executive functions.” That means she could not decide to do something. She could not decide to respond and could not decide to get up and walk to the bathroom and could not decide to pick up food with a fork and move it to her mouth. She was “all there” mentally, and we could see that in her eyes, but she could not communicate much at all. Once in a while we could see a slight smile at the corner of her lips, but usually the only type of emotion she showed was in tears, either happy or sad.

Because of my mother’s changed demeanor, most of her friends ditched her. In fact, pretty much all of my parents’ friends ditched both of them because “We just can’t stand to see Kate in this condition.” For ten years almost all of my parents’ dearest friends avoided them because they could not handle seeing my mother. This is one of the lessons I have tried to gain from this experience. It does not matter how uncomfortable a situation might be to ME, I must think of the person in the situation and how much more uncomfortable it might be for them. I could see the pain in my mother’s eyes when I took her to church with me and people walked hurriedly as far away as possible, as if they did not see us.

To avoid sounding too saintly here, I must say that there is no one… NO ONE… associated with my mother’s illness and death that handled everything gracefully all the time. I know I had my own frustrating moments. One I remember vividly (and with significant shame) was when she was staying with me (I used to keep her at my house one or two weekends a month to give my dad a break), and I was brushing her teeth. She clenched her mouth shut over the toothbrush, and I could not get it out. I tried to get her to open her mouth, but she wouldn’t/couldn’t. I finally pulled very hard and yanked it out. Handling that gracefully might have meant sitting down beside her and talking about something funny or just waiting until whatever it was that told her to open her mouth happened. But full-time care of anyone can wear on a person’s nerves and patience. It showed in everyone from time to time, some more than others.

In the midst of all of this we had my mother’s family to deal with. Most of them have been antagonistic toward my father, and then me, for all the time of their acquaintance with us. There was no support from them during all of this, only insults and accusations. I learned as a child to avoid them because they did so much damage to how I felt, but my father did not learn the same lesson and succumbed to their attacks. He always tried to make them happy, knowing that there was nothing he could do, for his mere existence made them unhappy. The relationships with my mother’s family made my mother’s situation, and dealing with it, so much worse.

So what actually killed my mother? She starved to death. How undignified is that? And what is worse, the family (including me) had to make the decision for that to happen. She was going to die anyway. She could not swallow food without aspirating on it for the last few weeks. We had to decide to let her choke to death or sedate her and starve to death. We thought sedation was more humane. (This decision was made with the help of our Hospice staff that was invaluable to us during this time.) Deep down in our hearts, I believe we all wanted her to just not wake up one day so we would not have to make such a horrible decision, but it was not meant to be. There was a time 1-1/2 years earlier where she nearly died from an infection. My family was driving to Missouri, and she was not expected to live until we got there. When we got close, we learned she was still alive so went straight to the hospital at 4 a.m. She not only lived, but lived normally (for her state of decline) for another 15 months. I often wonder why she did not die then. Her life by this point was devoid of much of anything good, but she could still walk and go places. I do not know how much she enjoyed that, but I have to think there were still lessons to be learned from her being with us longer. It just seems that she was meant to die in a terrible way.

In the end, we were glad for her death because we know she was in terrible pain the last few months. And really, I am not sure of what was supposed to be learned from such a miserable, drawn-out dying process, but I think everyone in my childhood nuclear family somehow gained a little strength and character from the experience. I wish those lessons would not have been so tough to learn, especially at my mother’s expense, but I refuse to believe they were in vain.

I want to write about why she had the seizures in the first place and what was going on in her life before that, but apparently I am not ready to do that yet. From my perspective, my mother’s death could have been prevented. There were no natural causes. She was physically healthy her whole life and barely ever had colds, let alone anything life-threatening. Her illness was inflicted upon her, and there were so many places in her life where it could have been stopped, but it was not, either from selfishness, maliciousness or ignorance. Truth be told, it was a group effort to kill her. Definitely not intentional on probably anyone’s part (though some did not care if they damaged her with their selfish agendas), but all of us close to her, and my mother herself, probably played some part (big or small) her illness and death.

Come back tomorrow for something a little more cheerful!

 

blue and bright

blue and bright

 

The above picture is Chicklet’s eyes.

Both of our girls have blue eyes. That is not uncommon with red/reddish hair, but we have to admit that we were/are a little surprised by it. Neither Prince Charming nor I have blue eyes. Neither do our siblings. Or our parents. Yes, there are blue eyes in the family (obviously), but none close to us. Prince Charming’s mother even had red hair with brown eyes. The blue is strange indeed.

Last night Chicklet’s eyes were getting a little red and watery. We began to fear she had conjunctivitis. We were not sure because we were out later than usual, and she had had a very mild cold and had not had a good nap, so we thought it just might have been from being tired. However, this morning it was only worse. Here are Chicklet’s eyes when she got up this morning:

not so cheerful

not so cheerful

Last year at Chic’s school, there was a “pinkeye” epidemic which made them close school for 1-1/2 days to disinfect.  I used to get this when I was a kid. But in all my bouts with this condition and all the kids that had it last year at school, I have never seen eyes like this.

In the picture her eyes are so swollen that Chicklet cannot open them enough to see how bad they are. A great deal of the white portion is not pink, but brilliant red. It looks like her eyes are bleeding. Last night she was crying, and she cried blood. 

Prince Charming took her to Urgent Care when they opened this morning.

Let’s understand right now that I am not a reactionary mom at all, or an uptight one. Usually when we go in for our annual “well check-ups,” the doctor always says we must be really healthy because she so rarely sees us. Well, we get our share of fevers, flus and colds, but there is usually no point for going in for those things, so we do not. But my daughter was crying tears of blood. That stabbed me in the heart!

The rest of us have varying degrees of colds. We are praying (and washing our hands every 10 minutes) that no one else contracts conjunctivitis. Nothing is worse than having a sick kid (or, God forbid, sick husband) than being sick yourself at the same time.