Lupus the uncureable...wait what is that?

Sonja:

It is somewhat understandable that you

never felt it completely necessary to explain myself or my behavior when I don't feel good. I'm lucky to have the group of friends and family that I do that see me as Sonja and not sickly.

Although, considering the major health issues that you struggled with as a young child, it might have been best if you had taken the time to explain your health to others so your classmates, whom are adults today, would not be so ignorant when it comes to people having disabilities that are completely beyond the person's control. I feel the same way with regards to your experience of suffering two strokes at 18.

It is important for me to state upfront to avoid any flames or doubts that I am proud to be a citizen of the United States even though I am not proud of the government administration that is currently in office or the direction in which this country is going with regards to our future and that put into place for our children and their children so forth and so on. Having said this, the sheer ignorance of the general population when it comes to understanding and moreover accepting those with disabilities boggles the mind. As a guide dog handler and cane user as well as one that some consider something of a recluse, I find it important to begin teaching the generation that will learn versus attempting to bang the reality of life as I know it through the thick layers of concrete covers over the brains of adults. Each year, sometimes several times a year, I take various trips to the schools within the county in which I live. Most of these trips are to schools where my children previously attended school or are students of the school now; however, there is a somewhat equal number of trips to various schools outside of this district where I receive calls from principals, teachers, and even guidance counselors asking if I would mind setting aside a day or two for me to come to the school to lecture (educate is a better word especially when dealing with children between kindergarten and fourth to fifth graders) about how I manage to life my own life as a mother, wife, homemaker, and freelance writer considering the string of health dilemmas, which falls into many categories yet each health issue crosses into or is the result of another health problem.

I would love to find some manner to magically bottle the experience of walking into a department store or a restaurant with my guide dog or cane and while there cross paths with a student I had the pleasure of speaking with about my life and the manner in which I must live it while at the same time hear this said child educate their parents on the reasons as to why that dog has a right to be in the same store/restaurant as the child and his/her parents. Nobody can teach adults better than children. I could attend a press meeting or town hall meeting to discuss the need for fellow citizens to be more careful at the stoplights in the city because there is a reasonable expectation that I could be the one standing at said stoplight waiting for the chirping noise to begin so I will know it is safe to cross the street. Sure, some of the adults present will get the message to be kind and watch the line but there will be a considerable number of others that will not care. Furthermore, this does nothing to educate the other adults in the area that do not attend these meetings. It is a good portion as to why I enjoy teaching the children. At least with children, the adults in the city will get the message one way or another. It does not take into account teaching those without children but considering I do this every year and most couples have children eventually there is a high probability that they will eventually get the message. More than a decade ago, this was a major public service announcement that was gravely important to get out because during that time, I was the only guide dog handler in our county. I was not the only blind person in the county but I was the only one that took back my independence as much as one can take it back while living in a rural suburban area reeking of urban sprawl making it impossible to have any real functioning disability transit or even public transportation for everyone.

Since the topic of the blog falls into the category of lupus, I will stick to information regarding the disease for the moment. My oldest child, who is a young woman today had to choose the topic of an essay for her allied health class in what I believe was her junior year of high school. The topic had to include specific areas of the body and diseases and/or illnesses that affect that specific area of the body. She commenced to doing her research, which she does quite well. It is no wonder considering that I am able to earn a decent amount of money throughout the year as a freelance writer and my children benefited (and still do) from my extensive use and knowledge of the English language. As you can imagine, she chose the topic of lupus, more specifically SLE with the addition of Sjogren's disease since the two generally go hand in hand. I allowed her to go with me to one of my lupus checkup appointments where she had the opportunity to discuss various points of medicine with a doctor specializing in autoimmune diseases and how it affects the body. One night late she printed off a page on the printer and came to me with her eyes filled with tears. The statistical information regarding mortality for someone with SLE in the stage at which I am is 10 years. Part of her was angry with me for not telling her. Another part of her was afraid because I had been living with the diseases for several years not counting the years I was symptomatic yet undiagnosed in addition also to the time I was in remission without even knowing I had the diseases in the first place.

Ten years.... Can you imagine your oldest child hearing this for the first time because you felt it necessary to keep the information from the child rather than tell the truth? My take on the subject was to not frighten her anymore than I did already when I spent hours in the bathroom so sick I could not stand yet having nothing to throw up except a bit of bile considering I had not been able to hold down any food all day and nothing but ice chips for fluid while my joints seized and my temperature teetered between 104 and 105. Even worse was the fact I had spent nearly two days in this shape with nothing to make it any easier to manage. Until lupus, I had always had a completely honest and open relationship with this child. We depended on it for years. I was straight to the point leaving nothing out and our relationship was all the better for it. By not telling her this vital information "for her own good" so I kept telling myself, I was insulting her intelligence while at the same time lessening my illness, which was equally as stupid on my behalf. I apologized to her. We cried together for almost an hour. Afterward, I told her that I was not a firm believer in all statistics because many were only a generalization of information. It was not indicative of one person because everyone is different. I promised I would keep her in the loop from that point on. I keep this promise even today although if I didn't say anything she would know immediately since she works in an assisted care facility as a medical technician, CNA, and a currently shared position of office manager since she is currently attending college as well. She can predict a flare outbreak almost as quickly as I can. As for blood pressure rates, mine registers low with averages of 75/50 to 80/60 almost all the time unless I am in a flare or in pain. My pressures climb considerably when I am hurting and the medication I take does not cover the pain to the point where it is tolerable.

I will be the first to admit that it is not our place to educate the public; however, there is a portion of the public that lacks general grade school education let alone college-levels. Most, if not all of this specific group of people are equally ignorant when it comes to health conditions especially when it relates to a problem that requires more than your general practitioner. Imagine if your parents had not had the commonsense to ensure you received treatment from a nephrologist when you were 14 years old. Without that parental instinct or commonsense knowledge telling your parents or parent whichever the case may be, you might not be here today talking to me across the digital lines of the internet. I feel confident that you will agree with me that far too many of the current generation reaching adulthood are lacking a great deal of education on nearly every level but also lacking education as it relates to commonsense. The rate of teenage pregnancies and high school drop-outs are increasing exponentially and are at grave proportions. There are no hard and fast ways to ensure the education of this group other than hope they will wakeup enough to seek higher education not only to obtain better paying jobs but also to know more about the world around them, how they can change that world for the better if they participate in various community and state programs/organizations, and most of all how with an education they can propel the next generation to new heights if they will only educate themselves. It does not always require a college education to become smarter. Prior to my diminishing residual vision, I was able to build computers, finds bugs in the system, repair it, and put the system back together again. I did this while spending several years reading everything I could find online about computers and then using what little was earning online through financial opportunities online back in the day when it came to associate stores and etc... I managed to learn to build computers from the case up. It was not long before I had people coming to me instead of the computer shop nearby. Some two years later the computer shop packed up and left with the owner having the knowledge that most people brought their computers to me. The Achilles heel between that computer company and my little side-line hobby that happened to afford me a bit of extra money was the fact I was not taking these people with computer issues for a ride. I did not charge the insufferable $175 an hour plus parts. I charged about 25% above parts or $75. Often I had people pay me considerably more but it was my lack of greed that brought people to my front door instead of their storefront. The second computer store that moved into the building suffered the same fate. During this time, I witnessed something sad and unfathomable. One of my cousins who lived nearby called me regarding problems with two of her computers, a notebook and a desktop. She brought both computers to me to repair them. The odd part of this is not that I had a customer that was family. The odd sad part of this is the fact that I went to college for accounting, business administration, and later medical transcription. I had NO formal training in computers. It was trial and error and the thrill of the hunt that pushed me into tinkering on computers. I did this until it became physically impossible. The strange part of all this is the fact that it had not been but a year or two prior to this phone call that this cousin in question graduated with an associate degree in computer information technology! I ran a defragmentation on the hard drives, cleaned out a few malware bugs, sent her to a store where I received parts at almost wholesale cost for parts to pick up two ethernet cards, cat5 cable, and a wireless router so she could link the computers together at home, get better speed from the soon to outdate desktop, and have access to wifi internet when she took her notebook with her when she went out or on vacation with her husband and children.

I love this cousin dearly but I am not one to let something such as this go. In our talks while I was completing the last of the upgrades and repairs, I told her she needed to either obtain a refund or return to college to take the program over so that this time she would know these things. She had been working in a convenience store because she was unable to gain employment in the computer industry due to her lack of knowledge of the computer industry. During those years I received a multitude of offers for employment from various counties and in a variety of states with two companies offering to cover my expenses to relocate; however, I had to turn down the offers. I had children in a stable environment, their dad could not relocate with his job, and I had no driver's license in which to go to and from work in addition to the travel involved with the job itself. Plus, there was the sad little fact that my sight was diminishing fairly regularly even before the autoimmune diseases became an issue. When it got to the point where I was unable to work on the hardware part of computers, I would and still do walk people through repairs. I recommend where to buy parts, whether or not they should upgrade an older computer or simply buy a new one, and give advice on software. I still beta test a reasonable amount of software and electronic products only it is not as frequent or as "sight-required" work these days. Still, I did not give up on trying to work. I was able to work from home for a company rather than as a private contractor or private business owner when I went into medical transcription for a national company after passing the required transcription test where the prospective employee transcribed a cassette tape filled with real patient dictation information although the personal identifying information was missing as per confidentiality, which was before the current confidentiality act that came into affect with HIPAA. I was the only person, newbie to the field or veteran, that ever passed that test with a perfect score in the nearly 20 years the director had been in her position of the hiring and firing process of the job. It did not matter that I was legally blind. It did not matter that I was unable to drive. It did not matter that I had to rely on the internet medical resources, which are plentiful, and medical reference books that were becoming available in software programs that the screen reader in my computer could read to me. I had the entire AAMT Book of Style, the medical transcriptionists' bible, memorized. The editor assigned to me when I began my first shift of work was wonderful. Instead of the standard three weeks of having all transcribed documents proofed by the editor before going through the system back to the hospital, my probation period ended in under a week due to my proficiency. After six to seven years with the company, I cried the day I had no choice but to resign following the discovery as to why I was having excruciating pain in my right arm especially when working and I worked all the time but most especially I worked nights, weekends, and holidays. The last day I worked, the director, my editor, and the guys in the tech department all sent their tearful goodbyes as I did mine. Both the director and owner left me with the knowledge that should a cure ever become available my job would be waiting for me when I wanted it back. Instead of my health getting better, it became considerably worse. I felt considerably worse on so many levels but most distressing for me was the fact that I was unable to work again. I had not thought of taking my freelance writing I had been doing for years while in college the first time, throughout my education in MT work, and the column I wrote for a monthly newsletter for a former MT guild group as well as fund-raising letters for the guide dog school, a booklet on a day in the life that shared the lives of 10 students with guide dogs including me, and the essays that earned the guide dog school the Points of Light Award and the Reader's Digest Award not to mention my contribution to the alumni newsletter. It took a close friend and sheer desire to put those skills to work in such a manner as to allow me to take back the self-esteem I am notorious for when it comes to having a career, which for me gives me purpose. I am not the stay-at-home-mom that bakes cookies and sets up playdates. I began working at a young age and never stopped until my body betrayed me. As with any company I work for be it on payroll or on a freelance basis, I am always up front and open about my health and my vision. I feel complete honesty in the workplace is crucial to running a tight ship. It gave me a healthy and generous relationship between my employer (contract or payroll employee) and me. Hence, that education of others I mentioned earlier.

I have such a widespread reputation in my hometown, among the school districts, various governmental agencies, and a variety of contacts throughout this area and on line who will share my email address or they will email me with the person's name and/or phone number because the person is in a similar situation that I was in sometime in the past and this person needs to have someone that understands and can explain the changes as well as how to maintain a life separate from the disease as much as is possible anyhow as well as how to function in day to day activities or deal with spouses who are less than understanding. I advise people on child-rearing, education, dealing with the educational administrators when they are not doing their jobs, how to and which government agency to contact for assistance with disability issues, and how to keep a journal when suspicions are viable enough that a journal to share with one's general practitioner is helpful in finding the problem in addition to finding out how to maintain or cure it. Despite my being the only blind student in the ceramics class and having had nearly a three decade gap in my instruction, I have been the one that provided the necessary assistance to one of my classmates when it came to how to make sure their clay centered on the wheel. I taught this person along with a few others how to NOT depend on their vision to ensure center but rather to depend on tactile senses instead. It works better for them. I am not vying for sainthood. I'm just thankful to help. It lets me know that I still have worth and experience to share.

Much of my openness came about after attending guide dog training for the first time. I had spent time with a few blind people in my life before blindness but not to the extent as I did while training or since. The differences in independence, adult roles, and the ability to work alongside sighted trainers as a blind student yet an adult too ran such a wide gamut. It appeared as if the students, all adults, that spent their lives in schools for the blind suffered from what some in the blind community refer to as blindisms.

The definition of blindisms is the lack or unwillingness to engage in conversation, personal protection of civil rights, and even the attempt to find employment was amazingly high when it come to those educated in the blind facilities versus the blind counterparts that attended public school in a mainstream program. Research into the subject, which included getting to know people who attended schools for the deaf, schools for the mentally challenged, and more that attended schools for the blind proved that a large number of these adults had major issues when it come to integrating their lives in a college setting or an employment setting where they worked alongside others without disabilities. It was as if when the parents chose to send their children off to schools that farmed these children into little chutes with labels it somehow stunted their social skills when it came to functioning as an intelligent and confident person. The majority of those that attended school in the mainstream programs with other students including those in the mainstream programs with different disabilities had their social skills fully intact. I swore then and there that should one or both of my children inherit my retinal disease or optic nerve defect I would ensure that they remain in the school system with other students in a mainstream program.

Students with mental illnesses such as fetal alcohol syndrome, Downs syndrome, and MS, cerebral palsy, and other disorders that affected the mobility of the student and/or the ability of the student to learn or retain rocket science material had better chances of someday living on their own either alone or in an assisted-care type of apartment facility where they could live independently within apartments yet still have access to a resident living in-house to provide assistance in areas where they required some help in situations calling for actions greater than their comprehension. These students growing into adulthood managed to find employment, maintain a checking account, and had the ability to shop for groceries, cook, pay bills, and even go out on the town with friends on occasions was more than a simple pipe dream. It was and still is happening. My oldest daughter volunteered as an assistant teacher for three years during high school to help a teacher of students with special needs. Now, she has some of her former students entering college and some of them actually live in their own homes or in assisted care apartments. Again, my research from medical journals and personal accounts from families and students both living near me and across the country with a few across the globe showed me that when placing these adults as children with other children in a mainstream program allowed them so many advances that others who were shipped away to live-in facilties where they remained until they were of age, many of which returning to mental hospitals where they technically did not belong were short-changed and never allowed to reach their fullest potential.

Until people like us with health problems and the ability to correctly articulate how our lives progress, the general public will never learn anything thus allowing that ignorance to grow to where it can make the difference between a disabled person having a productive life and one that simply gives up all hope. I guess one can say I am an optimist and a glass is half full type of person.

Over the years my oldest daughter has had teachers that wanted to arrange parent/teacher meetings but had to work within the confines of my finding transportation to and from the school often asked about my illnesses and disabilities. Some even went so far as to tell my oldest daughter how sorry they felt and how much sympathy they had for me. She always replied in the most kindest manner letting them know to never let her mother (me) hear of anyone having sympathy or pity for my having had the misfortune of being born with hereditary and genetic disorders that flipped into the on position causing the diseases to become active. I do not want sympathy or pity. I do want understanding and acceptance of the person I am. I am an educated woman with commonsense and a nose for business. I am a woman that will call out another disabled person who refuses to at least attempt to become a viable member of society. I am a woman that will stop in the middle of a store to discipline a child of someone else's while at the same time explaining through educating this child about how their calling my guide dog or otherwise trying to get the attention of the dog can cause me to get hurt, even severely hurt. I will stop people in their tracks when they scream out of the blue because it finally dawned on them that I have this beautiful black golden/lab cross, which they tell me now has a graying goatee from his aging. I am a woman that will try darn near anything at least once.

I will contact or search for the appropriate agency to assist me in finding items that will help me remain independent within my home and life in general. I will help someone else find the agencies they need to become more independent. At present, I am assisting an elderly veteran of the Korean and Vietnam Wars to obtain assistance from the VA or one of the veteran organizations. In the past I managed through the assistance of congressmen and White House liaisons and/or the assistance of the Client Assistance Program and three of our former governors as well as a mayor to obtain assistance for various people to help with their obtaining disability for conditions that would never improve to the point where the person would become able to work a regular job ever again. One had agent orange exposure, psychological problems including PTSD, and suffered a massive heart attack that shut down the entire right coronary artery and nearly cost this man's life. Another was a woman who hired an attorney that worked on her case with social services for three years with no progress while this woman slowly lost nearly everything she had and could barely take care of her three children after her husband walked out on her because he didn't have the stamina to stand with her through sickness and health. She not only received her disability including the back-pay for her children and herself, but the attorney only received $100 of the consignment fee and she had a black mark placed on her record for lack of proper representation of her client.The attorney nearly lost her license to practice law. A visit with me while I was at the courthouse obtaining assistance to list my taxes as I receive each year put me into contact with a former kindergarten student who was totally blind. The teacher asked if I would mind talking with her student while they were there with the class on a field trip of the courthouse. I was more than happy to help. I helped this totally blind young boy learn what options were ahead of him and the best part, according to him, was when I taught him how my guide dog led me around in the building. I let him hold the harness handle and leash with my standing beside him so he could feel the turn in the handle as my guide dog maneuvered around obstacles including people. This young boy is now a young man in high school. He is still adamant about wanting a guide dog. He still talks about me to this day. He also plans to attend college. That half an hour I spent with this child changed his entire outlook on life as a blind person in a county where the blind are rarely in public with the exception of me. I learned a few years ago there are at least three including me, women in this area that are blind. There are probably more but I know for a fact there are three, again including me. After attending a mini program that helped us learn more about independence at home with blindness including the access to a variety of products I did not know existed such as a blind-friendly/adaptable basketball with goal finder and a bell that lets me know when a ball goes into the net. I play basketball with my girls when lupus and time allows. We play Scrabble on an adapted board fitted for the blind and the sighted to play opposing each other. Another sweet gadget allows me to continue working on my calligraphy with a dip pen instead of having to change to a cartridge style. At least one of the two women followed my footsteps in obtaining a guide dog. The one that obtained a guide dog even returned to college! Her confidence grew over the 12 to 14 weeks of meeting each week for that class. My ability to serve on the steering committee for the guide dog school through the election process amazed her. I told her that the only difference between the blind and the sighted was that the sighted can drive and we cannot. Other than that, there are ways to maintain independence in every other area and aspect of our lives with the use of adaptive equipment, talking thermometers for taking our temperatures and those of our children, adaptive cooking aids to prevent burns and overcooked foods with the assistance of elbow-length oven mitts and kitchen timers. Raised labels, bump dots, and braille watches/talking clocks help us keep up with time to raise our children preventing them from missing their bus or helping them keep up with time when they have to read their 30 minutes each evening. I taught her the way I taught my youngest to learn her ABCs and simple math by using letter and number shaped refrigerator magnets. She was reading and writing as well as computing simple math prior to her second and third birthdays and long before beginning school. My youngest child has been in the AIG program (academically and intellectually gifted program) since receiving letter grades. She underwent testing in kindergarten that allowed her teacher to obtain class materials from the first and second grade classes to prevent her from becoming bored with classwork that was beneath her educational level. As I was teaching her to read and write, I was suffering through one of the most horrible experiences of my life. The doctors were trying to find the best medicine regimen to control the pain and other side effects of lupus and Sjogren's disease. I was unable to run and play baseball or other physical activities but we played school. I will never regret my decision to do it.

Even now, what little time I have had to allow my daughter on the pottery wheel, she is able to throw small jugs with a bit of help. Her hand building is better than mine but we are getting there. Once she becomes better, I plan to enter her projects into the K-12 art contest programs for children that work in ceramics. I already discussed the ins and outs of the procedure in addition to how to submit her work since the school district does not offer pottery as an art form education. I can either have her art teacher submit her work or I can do it as a parent or the art teacher and I can submit her work together. One of the deans at the college and I are discussing the possibility of this child attending college classes in the graphics art program on campus during her middle-school years to help her get a jump on college credits and extensive education before graduation. My oldest did the same except she obtained her CNA certification two weeks prior to graduation from high school. My oldest prefers medicine to art and creative writing whereas my youngest is more like me when it comes to art and creative writing.

It has always been my opinion that by showing my children I can be and remain a viable member of society I was teaching them that if I can do with all the health issues I face each day then the world is their oyster so to speak and they should have no problems obtaining their dreams without the disabilities if I can do it with them. The lectures I give at the schools basically teach the same concept while teaching the parents about disabled people at the same time. It is a win-win situation. There is no reason to keep our disabilities hidden beneath the surface. You never know when you talk to someone about your health problems that you might be helping someone else that either is experiencing what you experience or they know of someone who is experiencing it. Your contribution to their education can possibly mean the difference between life and death for someone else.

In closing, I would like to add something a friend of mine told me once. This friend actually works for the school board so she seems much of this first-hand. She told me that she was so thankful I was such an open person when it come to health disorders and the disabilities I live with each day. She was also thankful that I shared my life with students and teachers. Many of the teachers she sends my way with regards to contacting me to talk to their classroom of students come back to her with the greatest stories of how my life touched the lives of every student in her class. I always receive this sweet cards of thanks for taking time out of my schedule to arrange to talk to the students. These same students often come up to me in public weeks, months, and even years later to thank me for talking to them and showing them a different side of blindness and/or autoimmune diseases that they didn't know about until I came along. The hugs from these children and young adults are the greatest gift I could receive. It in many ways is vindication for me allowing me the chance to learn that my words and time was not a waste but it really did help these children of all ages. BTW, it is equally as rewarding to sit with the elderly in assisted care facilities, rest/retirement homes, and nursing homes.

The greatest joy among the elderly I had was when my favorite aunt was in ICU in a comatose state some months before she died from complications due to autoimmune diseases. The male patient in the room beside her room told his family that he saw a black dog in the ICU hallway. His family immediately thought he was going off the deep end or was having some major side effect from the medication. It had to be some type of dementia they told the doctor. None of this man's family had yet to run into me at the hospital so really, what were they to think when their loved one told them he was seeing animals in ICU when it was not a likely probability. The family nearly had him convinced he was losing his mind until I came back to visit my aunt again. This time the man's doctor noticed I was in the building. He knew me, which is to say he knew me as the guide dog handler in the county with the guide dog, normally referred to as, "The lady with the guide dog." Everyone knows me as the lady with the guide dog. LOL! The doctor and the male nurse I knew personally asked if I could step out of my aunt's room for a moment. I agreed. They asked if I could bring my guide dog into this man's room so he would know he was not going crazy as his family nearly convinced him he was losing it. I not only met a wonderful elderly gentleman who had an infectious laugh, I had the opportunity to meet his family and we all laughed about the situation and how it came about that day. I stopped by to visit with this man every time I went back to visit with my aunt. His doctor and the male nurse believe the man's sudden improvement in his health had to do with my stopping by to say hello and bringing my guide dog with me to say hello too. His puppy walkers had him certified as a therapy dog prior to him coming to train and live with me as my guide. BTW, my aunt did recover and come out of the coma. Unfortunately, she died several months later. That was a little more than five years ago. I still feel as if I lost my mother and my best friend but I despite losing her, I have those wonderful memories of the man in the room beside her room in ICU and how he recovered so quickly all from having visits with a guide dog that made him smile and laugh. Don't sell yourself short. Your life story might help someone else. If nothing else, you can be assured that your life will touch the lives of others in such a profound way even if you never receive any knowledge of it. That giving nature comes around again and again as positive karma, at least that is my opinion. It doesn't take much time to stop into the nearest rest home to visit with an elderly person or spend the day helping out at a local school or even joining a volunteer organization especially one where you can put your knowledge and experience to use to help others through the stages of grief when they experience something similar to your problems. Your very existence can give them hope. It's worth it. Take it from me, it is well worth it and you can't buy that kind of happiness with all the money in the world. It's literally priceless.

Warmest regards,

SJ

Katia:

I hope that perhaps the doctors were mistaken on the diagnosis. Fibromyalgia often presents almost identical to lupus only the differences usually are in the blood work. It's still important for her to continue seeing a rheumatologist and neurologist regularly for testing to make sure that lupus does not become a factor if indeed it is only Fibro that she is fighting now.

Ten years without any organ involvement is a good thing. Statistically, someone in the moderate to severe stages has a lifespan of about ten years. This is what upset my daughter with me when she did her paper in high school. She learned about the statistics and it upset her with me. She was actually angry because I kept it from her. I explained to her that it was only a number and a statistic. It was not written in stone or absolute. Besides, I told her that I didn't have any plans of going anywhere anytime soon. I want to live to see her in a stable career, perhaps find a fellow that has his priorities in place and will love her as she should be loved and respected, and then if she decides she wants children one day (she doesn't right now), I hope to be around to witness the births and lives of my grandchildren. Additionally, I want to be here to raise her little sister and teach her what she needs to know to be a viable respected and intelligent woman with a college degree and a head full of commonsense along with booksense so she can find her ideal career choice then work her way to the place she wants to be within the career of her choice. I also want to witness her finding a wonderful man that will treat her with love and respect as well as being here for any grandchildren I might have one day.

My only hope, desire, and wish is that my girls will be fortunate enough to miss having my retinal disease, optic nerve problems, and autoimmune problems. My oldest is already having issues with joints and bones. It worries me. As soon as her insurance is active, she promises to go through the testing phase and get her hip checked out. It's in bad shape and getting worse following a car wreck when she was 16 years old after a cop from a neighboring county hit her then got off scott-free.

Best of luck with your mom. I do hope she will remain well and be there to witness you grow and mature into the person she hopes you will be - the one that can find happiness and a career you love, a person to love, and maybe even children. I hope she can be there to enjoy all these things.

My warmest wishes and blessings,

SJ