A Little Bit Funny, A Little Bit Serious
I tend to like to put a humorous spin on things, but I do like to bring out issues. Our society has issues, and no one can deny it, but there is no need to mope about it. If you see something, fix it, but first you have to realize there is a problem. This page is dedicated to those moments in time when we realize something is wrong. Take a look at our world. See the humor, and pain as well. Get excited, get a little angry, laugh it off. The time will come when you see something that might need to be changed and all I really need to say is go for it. Make change happen.
Living With a Silent Angel
Ability comes from "disability"
One of the most joyous things in life can be the birth of a child. As you start to plan to have a baby you also plan how you want your child's life to be. You begin to build hopes and dreams, and pray that your child will be healthy and strong. The day your baby girl is born is such an overwhelmingly beautiful moment as you gaze at a perfectly healthy little child. As she begins to develop and grow, and as she progresses, you feel such pride and joy, and begin to plan for her future. How will you send her to college? What will you do when she starts wanting to date? What kind of career will she choose? You hear her first word, "dada!" and every hardship you ever suffered in your life pales to the joy you feel.
Then something changes. Where she was cruising around furniture, she can't walk at all. The words she spoke, she no longer says. She seems frustrated and cranky and doesn't seem to have the skills she had months ago, and the doctors aren't sure what is going on. The pediatrician works tirelessly to try to find an answer and thinks she may have found an answer, but it's not a pleasant one; Rett Syndrome. She sent you to a geneticist who claims it cannot be that diagnosis because she is too social. Two and a half years and many specialists later it is finally confirmed; though it requires a trip out of state to one of the nation's leading specialists. All that time and wondering, dreams shift and change, and your whole view of the world is different.
I have always had an accepting view of the world, but some changes take time. It can be heart wrenching to have so many plans for your child and see your ideals pass so quickly. It takes a while to sort through all the emotions, all the information. Sometimes it just takes time to remember that what you truly want for your children is joy and happiness and that maybe this is still a very real possibility, even though it doesn't live up to most people's preconceived notions. There is definitely a grieving process even if it does not seem obvious, and there are stages to pass though, but when acceptance comes, it brings transformation with it and you find that you are the one who has changed.
My youngest daughter is one of the "silent angels" with Rett syndrome, a neurological disorder that affects primarily girls. She cannot control her body the way she wants, walks with difficulty, and has seizures. She cannot speak, at least with words, but her eyes speak volumes. We have been to dozens of doctors in many different specialties and she has had multiple surgeries just to control certain symptoms. Our house has several types of medical equipment, and we stay abreast of the latest research and try to help out other parents that have children with the same disorder as well as other special needs.
You would think that all that we deal with would be very trying and taxing. Don't get me wrong, there is plenty of work to do, but there is a definite pay off. People without a special needs family member have great difficulty understanding. They pity us for what we "put up with" and think we are saints for dealing with it all. The real reason we call our loved ones special is not because they require special care but because of the way they affect everyone around them. My daughter shows such joy, even in the midst of trials and adversity. There is a light within her, by which you can't help but be lifted. Girls with Rett Syndrome really are angels in that they remind us that nothing should steal away our joy. Even though life has its struggles and sacrifices we cannot forget that happiness can occur in any circumstance, if only we let it. I have had people say to me on many occasions that my daughter is lucky to have me as a father, but the truth is that I am the lucky one.
Struggles in life are going to come no matter what your situation. I have learned the great value of finding others in your situation and gleaning from their wisdom and experience. There is great power in community that doesn't come from simply living in the same area of town, or going to the same school. It's living through the same experiences and trials that bond us together. Its helping each other out that makes us strong. My wife and I have been involved in an international group that shares information with other families, friends, and professionals that is a very powerful tool. If a new treatment is suggested, there is probably someone, if not many that have already tried it, and they can share their experiences. There is great power in community, and we support each other through the good and bad times.
I taught myself to read primary research literature many years before I attended college. There are way too many scientific and medical advances occurring every day for the physicians to keep abreast of it all. This is the reason for specializing. When a child or loved one has a rare disorder, there may be only a few physicians in the world that have the time to read literature on that one disorder. Early on in my daughter's life few physicians had even heard of Rett syndrome, or worse had outdated information that they seemed to present as final (and often fatalistic). I discovered that educating myself, and finding physicians that either knew the latest information or were able to take the time to find out was of great importance to my daughter's well being. Often I find I am the one that is educating my daughter's physicians on specifics of her syndrome.
I also learned how very important bedside manner can be. How a physician relates to a patient and their family can have a great effect on patient outcome. It can be difficult to maintain hope if you believe a physician when they tells you it's hopeless, and just as difficult to lose hope when they tell you there is still hope left. The same information phrased in a slightly different way can make a huge difference. Honest disclosure balanced with care and determination can completely change the way a patient and their family feel, what their decisions may be, and how they act. It is very important as well that the patient knows that they ultimately control their own healthcare, and that of their dependants. Patient rights are of great importance and are stressed for a reason. A great physician with one type of care may not be the best for another. Sometimes it takes some searching, either on the part of the patient, or physician recommendations, to find appropriate care. I know my own daughter has had quite a few Neurologists in her life, both to find one we were comfortable with, and one that was comfortable managing her case.
I can look back at my life now and see the substantial changes that have occurred in me due to my youngest daughter. What amazes me most is to see how many are actually transformations from ideals that I held to actual principals of my life. When I was a teen, I was almost reckless about my future but experiences related to my daughter and her care have clarified much of what I want out of life. I planned to go to college and go into a career in biomedical research because I was good at the sciences and wanted to help people. My experiences have lead me to know that helping people is more than just making more discoveries, but also in relating to people in their times of need to provide assistance. I used to be awkward in relating directly to others, but life has taught me how important it can be to be able to help, and accept help from others. There is great power in forming teams, not just of providers, but of those that need assistance as well. People are more likely to be active participants and take ownership when they are involved. This skill has helped me to make and reach goals in all areas of life, school, work, and community and family.
She has also inspired me in many ways. There are occasions where programs were not available or were falling away. My wife and I were both able to participate in helping to keep a special needs soccer team active for several years. We have been available to help other parents when they find out their own daughter's diagnosis, help wind their way through the maze of information and even help understand the truth when disinformation about new discoveries was presented. I have learned the power of education to shape not just my own life, but those around me. Building teams with a common goal can be an extremely powerful force.
The experiences I have had due to my daughter have shaped my concepts of what I want to do with my skills and talents. My views of ethics and patient care are greatly expanded from experienced the healthcare system from the patient's view and from that of a caregiver. There are some things in life that are difficult to relate to until you have been touched by experience. There is far more to my concept of medicine then just trying to make patients well. Not everyone can be healed and though medical professionals try their best, it is very important that the patient is allowed as much dignity as possible at the same time. It has done a lot to shape my concept of the type of physician is "the best".
Above all else my daughter has taught me that joy can be found at any point in life. No circumstance has to be a tragedy. Even in the midst of struggles, pain, or suffering there is always a reason for joy if you look hard enough. There is a time for grief, but to stay in that stage for long is debilitating and paralyzing. Problems can be faced and overcome head on, while still showing concern and caring for those around you. It has brought me to new levels of determination and excellence even in the midst of overwhelming odds while maintaining joy. I used to go through life trying to reach my goals and that hasn't changed; however, now I enjoy the journey.
To find out more about Rett Syndrome and what you can do to help, go to https://www.rettsyndrome.org
Just don't fall - Amazing story of an amazing young man
Josh Sundquist tells the story of his life from his life leading up to his having to have an amputation of his leg to living his dream of going to the Paraolympics. An amazing story of overcoming adversity. Don't let life or what others think of you stop you from living your dreams.
Truly one of the most inspiring books I have ever read! I just couldn't put it down.
The Day is Coming
And you won't be ready for it
For those that don't know me all that well, I am 40 years old and I was a teen in the '80s. I was kind of shocked the first time I turned on a "classic rock" radio station and they were playing music of the '80s. Now it is common place for people to think of 80’s music as classic rock, for some reason.
I was thinking today about what it will be like in 30 or 40 years. Those of my high school friends that are still around might be living in retirement communities, assisted living, or even nursing homes. How different the landscape of the community be then? Will they play groups like Air Supply, and Guns and Roses in the common areas for the residents at special times? Will a common conversation be a young woman talking about how her grandmother broke her hip because she fell down when trying to dance to Poison's "Talk Dirty to Me" or talk about how Grandpa ran his golf cart into a tree while jamming out to Toni Basil's "Oh Micky?" Maybe the exercise programs for seniors will feature water aerobics to the music of the Beastie Boys.
Then I thought of something truly horrible! There will come a day, beleive it or not, that you will turn on your radio, or whatever equivalent is available at the time and tune in to a "Classic" station and you will hear Justin freaking BEIBER! What a sad day that will be, but mark my words, that day will come. When it does I might just have to question if I still want to live on this world anymore. Maybe I can go be part of the colonization of some planet in Alfa Centauri by then, and they will have a better understanding of what good music is than the humans of the day.
Postcards from Uncle Matt - Look at the world differently
This is a video I made back when I was in college. My youngest Daughter loved "Fraggle Rock" at the time, and in one class we were sent to look at "ordinary" places in a different way. I made this video to show a different view of Rest Areas in a funny and different way.
Words can help or hurt
There is something fundamentally wrong with the word "feminist." For those that have a twisted view of the word, it mean that women should have the same rights and privileges as men, or in other words the sexes should be equal, a concept I believe whole heartedly. I have heard women saying they are not feminists, because the word has been abused in many ways. Some have used the word to mean that women should be dominant and given more privileges then men, or that men should be subjugated below women. This has put a twist on the word that has given it a bad image.
If you think of it on an even more fundamental level though, why put feminine in the word at all? Maybe it is because sexist was already used, and in a horrid way, but when you think about it words like sexist or racist, similar in structure to feminist, are terms used to convey very negative and hurtful concepts.
I'm not one who goes nuts with PC type language and think many PC changes to our language are silly and unnecessary, however when the word structure is flawed, maybe a change is a good thing. Even when looking in a thesaurus for alternatives we get words like womanist or womanism, but this just seems skewed to me as well, focusing not on equality, but on one sex as possibly superior. Yes, I realize that it is because women were subjugated and it would take raising up women to put them on an equal footing, but it still lacks the concept of equality to me. No one called the civil rights movement the blackist movement or we don't hear about the gayist movement when talking about civil rights of homosexuals today. In reality it is all a civil rights movement. It is all about equality. To discuss different parts of civil rights, why do we have to use a word like feminist to discuss one area of equality? Then again I think it is the same to discuss women's liberation. We don't say (insert subjugated group here) liberation as a rule.
Many groups are still given less privilege when doing the same or more work. This is fundamentally wrong. It needs to change. I also realize that society needs, at times, to be shocked into realizing there is a discrepancy and startled out of their complacency. It has happened with most groups as they start to break their bonds, as it were. It is just a shame that the words we use to describe the movement end up suffering negative connotations. I am all one for calling it sex equality civil rights movement, because that is what it is. We need to learn as a society and culture to treat all people as equal.