Thirty years ago, on February 20, 1985, the life my family and I knew was ended. With mom sustaining major lower body injuries and my high spinal cord injury, we were thrust into a new world.
In the three decades since then, we have all learned a lot. First of all to trust in God's timing and plan for the life we've been given. There have been several times that after months, or years, of planning, something we didn't expect ends up taking place.
Statistics say someone injured at age 20 and on a vent has a life expectancy of about 25 years. Someone injured at 40 goes down to just over 12 years. I haven't found research for injuries at my age (3 years), but I'm likely a little over or at the average age. I have friends that have similar stories and are more years post injury and others that passed away years ago.
Whatever the numbers say, I have been given a long time in this position and an equal amount of blessings. My parents have been the biggest gift through all these years and have gone through everything with me. Nights and days without nurses, time in the hospital, getting necessary supplies and funding, the list could continue for quite some time. Despite their own struggles though, they have helped in every way possible. Along with them are the countless caregivers I have been given and who have been a key part in helping me do the tasks I've been given.
Unfortunately, as time passes, it seems the challenges continue to expand. As I get older, pressure sores and skin issues continue to be more of a problem. Regular readers will know the posts of when I am flat in bed and not able to do much. This past year of the extreme funding struggles and continuing issues with equipment and other needs. I have had times that I couldn't see going on any longer and so looking forward to being done with the life of SCI.
When we are weak is when God seems to be the strongest. Putting full trust in His plan is often difficult, but the only assured way to go. As I work through this unique life, that trust continues to grow. With my parents aging, my needs increasing, and daily routines often uncertain, I never know completely what to expect.
I do know that I've been given these years for a reason and work to God's plan. I don't know how much more time I have, but be it short or long, I will continue to live the quad life.
Thursday, February 19, 2015
Tuesday, February 10, 2015
Watching Nature
Winter in Iowa is still holding on strong, but it is not keeping a tight grip. The snow we had the first weekend of this month retreated a lot this past week and Saturday was nice enough to get out and watch trains.
As the video shows, snow was still on the ground, but melting quickly. Between trains we even had a window slightly open. With the stillness of the air we could easily hear the call of a red winged black bird and even a bald eagle near the river behind us.
Even with the cold and snow, God's creature continue to be busy. My bird feeder has been busy the past few weeks with the ground covered. In the coming weeks hopefully spring will start to appear and the outdoor activity increase.
As that happens, the quad life will continue looking out my side windows.
As the video shows, snow was still on the ground, but melting quickly. Between trains we even had a window slightly open. With the stillness of the air we could easily hear the call of a red winged black bird and even a bald eagle near the river behind us.
Even with the cold and snow, God's creature continue to be busy. My bird feeder has been busy the past few weeks with the ground covered. In the coming weeks hopefully spring will start to appear and the outdoor activity increase.
As that happens, the quad life will continue looking out my side windows.
Monday, February 2, 2015
Old Quad
With my thirty year anniversary of entering the quad life approaching, I've been thinking back over the years I've been given. As a result, I've come up with this list of observations.
You know you're an old quad when:
I'm thankful for all the unique experiences I've given and look for more to come in following years. That's it for this week in the (old) quad life.
You know you're an old quad when:
- your every day equipment brings up memories of the “good old days” for caregivers.
- you order new equipment, and notice a change, and realize it has been this way for years.
- you have been “in the medical field” longer than your caregivers
- your doctor asks you what orders to write.
- you can’t begin to count how many people have seen you without clothing.
- medical students look to you for advice just like their instructors.
- the original doctor(s) that treated you have been retired so long that current doctors never heard of them.
- you can relate medical history with what you were doing in school.
- you have outlived every statistic for life expectancy.
- you have comebacks for nearly every comment you receive in public.
- the place you order supplies from knows you on a first-name basis.
- you fully know you can’t do anything without caring support of those around you and God’s care and protection.
I'm thankful for all the unique experiences I've given and look for more to come in following years. That's it for this week in the (old) quad life.
Thursday, January 29, 2015
Continuing Education
Every field of work that I'm aware of has some sort of continuing education. Nurses continue to learn about new medications and techniques, accountants keep up on new tax laws, and mechanics keep up with new engine components. Web development isn't any different than these other careers.
Technology continues to change, and so does the way you program for it. One thing that I'm doing now is making sites so that business owners can do their own updates. This was something I barely heard of when I started working on sites, but now it's common practice. In order to do this, I, and a lot of web developers, use a program called Wordpress.
Wordpress was originally designed as a blogging platform, but is now behind more than 74.6 million web sites according to one source. In another month or two, I will likely be having a site redesign project that will be using this platform. That's not unusual, but the site designer and I will be using an addition, or plugin, that allows for streamlined control over the site's design. This plugin is what is new to me.
Therefore, I have been learning how to use it with two other sites I have been working on this month. So far, I'm liking the opportunities it provides in terms of site layout. However, it's taking time to figure out what goes where to make everything work. I learned yesterday that it also doesn't use a certain programming language I'm familiar with for design aspects. Yesterday was spent looking through the changes and finding a program (such as Microsoft Word for text) that can read the code and let me work with it.
Learning new things can be a fun challenge and I'm thankful I have the opportunity to learn before I need to be working quickly. I can see this being something I'll use quite a bit, at least until another replacement comes. That is what has been going on in the quad life.
Technology continues to change, and so does the way you program for it. One thing that I'm doing now is making sites so that business owners can do their own updates. This was something I barely heard of when I started working on sites, but now it's common practice. In order to do this, I, and a lot of web developers, use a program called Wordpress.
Therefore, I have been learning how to use it with two other sites I have been working on this month. So far, I'm liking the opportunities it provides in terms of site layout. However, it's taking time to figure out what goes where to make everything work. I learned yesterday that it also doesn't use a certain programming language I'm familiar with for design aspects. Yesterday was spent looking through the changes and finding a program (such as Microsoft Word for text) that can read the code and let me work with it.
Learning new things can be a fun challenge and I'm thankful I have the opportunity to learn before I need to be working quickly. I can see this being something I'll use quite a bit, at least until another replacement comes. That is what has been going on in the quad life.
Tuesday, January 20, 2015
Day of Acceptance
Today, January 20, 2015, is the International Day of Acceptance (IODA). It is a day given to educate about all kinds of disabilities and learn how to accept these diversities into mainstream life. That includes schools, work, and anything people do every day.
In living the quad life, I know the pubic in general are not fully accepting of someone like me with diverse needs. Despite the passage of the Americans with Disabilities Act (ADA) nearly 25 years ago, many places remain inaccessible to wheelchairs. An addition to the ADA, Section 508, requires web sites to have certain features added to make them accessible for all users. Unfortunately, I commonly find sites that don't meet these requirements and site owners can be reluctant to have them included.
Despite these problems, disability acceptance is improving. First of all, these laws exist and since the passage of the ADA in 1990, several improvements in accessibility have been made. Due in part to this, you can see someone with a disability more frequently in public places as well as work. Accepting a person with a disability is a great start, but this country is getting far worse at acceptance.
Yesterday, several of the groups I follow shared a news story about seven kids that were "stolen" from their home (text has more detail than the video) by police. It is a Christian family that home schools their kids and they prefer to go without footwear. After a second investigation, the children were taken due to the house having a chemical used to purify water for the garden. A social media campaign has since started showing support for the family.
The general thinking is the anonymous complaint was due to home schooling from a Christian perspective, similar to the family I talked about last year. From what I've read, this is similar to my ideal for raising kids, perhaps minus the water purifier. Christians are being less accepted and not allowed to openly practice our faith at a fervent pace.
Living the quad Christian life has its challenges, that in some ways are easier than times past. However, in other more important ways, they are ever increasing. We will see what comes up in another week.
In living the quad life, I know the pubic in general are not fully accepting of someone like me with diverse needs. Despite the passage of the Americans with Disabilities Act (ADA) nearly 25 years ago, many places remain inaccessible to wheelchairs. An addition to the ADA, Section 508, requires web sites to have certain features added to make them accessible for all users. Unfortunately, I commonly find sites that don't meet these requirements and site owners can be reluctant to have them included.
Despite these problems, disability acceptance is improving. First of all, these laws exist and since the passage of the ADA in 1990, several improvements in accessibility have been made. Due in part to this, you can see someone with a disability more frequently in public places as well as work. Accepting a person with a disability is a great start, but this country is getting far worse at acceptance.
Yesterday, several of the groups I follow shared a news story about seven kids that were "stolen" from their home (text has more detail than the video) by police. It is a Christian family that home schools their kids and they prefer to go without footwear. After a second investigation, the children were taken due to the house having a chemical used to purify water for the garden. A social media campaign has since started showing support for the family.
The general thinking is the anonymous complaint was due to home schooling from a Christian perspective, similar to the family I talked about last year. From what I've read, this is similar to my ideal for raising kids, perhaps minus the water purifier. Christians are being less accepted and not allowed to openly practice our faith at a fervent pace.
Living the quad Christian life has its challenges, that in some ways are easier than times past. However, in other more important ways, they are ever increasing. We will see what comes up in another week.
Thursday, January 15, 2015
The Royal We
A late post this week, but it is still within the correct time. On weekday afternoons, I have been watching an online show that covers Biblical evangelism. While watching, you can chat with others who are doing the same thing.
One of them asked me where I live, and I answered we live in southeast Iowa, about an hour from Des Moines. His response was that he wasn't familiar with the city, but lived in Wisconsin. Therefore, I related my location to a few cities in his area, again saying we are a particular distance. After more responses using the plural, he wandered why I kept saying we and not I.
After some thinking, my answer was that I was referencing my town and family, not just me. In most conversations though, I find it strange, and even somewhat difficult, to just say I.
For pretty well every activity, I need help from someone else. I can run the computer on my own, but only after someone gets it setup for more. If I go to an activity such as a movie, concert, or just out to eat, I have to have two times the cost. For business meetings, I need to make sure the other person knows I'm bringing someone. I might be a bachelor, but everything I do is essentially as a couple.
When medical needs are being taken care of, caregivers will often ask how "we" are doing. I often respond with, "I don't know about you, but I'm fine." After so many years of hearing this, we has become my normal wording for most situations. It's only at times like above, when I'm not seen, that someone questions my reasoning.
In Matthew 28:20, Jesus tells His disciples that He is always with them, even to the end of the age. Therefore, no matter if we have a person physically with us or not, we are never truly alone. It's a part of the quad life, and every life that has been given.
 |
| Caregivers from time past |
After some thinking, my answer was that I was referencing my town and family, not just me. In most conversations though, I find it strange, and even somewhat difficult, to just say I.
For pretty well every activity, I need help from someone else. I can run the computer on my own, but only after someone gets it setup for more. If I go to an activity such as a movie, concert, or just out to eat, I have to have two times the cost. For business meetings, I need to make sure the other person knows I'm bringing someone. I might be a bachelor, but everything I do is essentially as a couple.
When medical needs are being taken care of, caregivers will often ask how "we" are doing. I often respond with, "I don't know about you, but I'm fine." After so many years of hearing this, we has become my normal wording for most situations. It's only at times like above, when I'm not seen, that someone questions my reasoning.
In Matthew 28:20, Jesus tells His disciples that He is always with them, even to the end of the age. Therefore, no matter if we have a person physically with us or not, we are never truly alone. It's a part of the quad life, and every life that has been given.
Sunday, January 4, 2015
Top Views in 2014
With 2014 now behind us, I thought I would look back to the most viewed posts from the year. The top five had several more few than the rest, but were somewhat surprising to me.
The fifth most viewed post was Cracked Door on May 4 with 199 views. This was the start of the following months with appeals and learning how to work with the new system of funding.
Coming in at position four with 204 hits is ACTS on July 27. Giving thanks in all circumstances is what we are called to do, and I'm glad to get reminders. I'm always thankful that I can work with kids, even when they surprise me.
In third position with 218 readers was the post titled Help from Friends on June 7. This past year I learned more about my friends than I knew and was very grateful for help. I'm still blessed to have friends in many different areas of life.
Second from the top was The Answer Is... on July 8 with a jump to 580 looks. After working on funding for over half the year, it was still not over. Continuing with appeals and contacting different doctors was getting very frustrating, as well as looking at care facilities.
In number one position, the most viewed entry of 2014 with 744 views, was New Horizon on April 7. After finally getting new insurance, learning that nursing would not be covered was quite a surprise. Thankfully, as we now know, it did work according to God's will.
I'm thankful for all the people that cared enough to follow this past year's story. I'm amazed at the numbers, but glad to have my story available for everyone. I can't guess at this point what will top out in 2015. One change I'm hoping to do is add more pictures or video. Looking at a solid block of text can be intimidating. We'll see what the first few week of the year brings in the quad life.
The fifth most viewed post was Cracked Door on May 4 with 199 views. This was the start of the following months with appeals and learning how to work with the new system of funding.
Coming in at position four with 204 hits is ACTS on July 27. Giving thanks in all circumstances is what we are called to do, and I'm glad to get reminders. I'm always thankful that I can work with kids, even when they surprise me.
In third position with 218 readers was the post titled Help from Friends on June 7. This past year I learned more about my friends than I knew and was very grateful for help. I'm still blessed to have friends in many different areas of life.
Second from the top was The Answer Is... on July 8 with a jump to 580 looks. After working on funding for over half the year, it was still not over. Continuing with appeals and contacting different doctors was getting very frustrating, as well as looking at care facilities.
In number one position, the most viewed entry of 2014 with 744 views, was New Horizon on April 7. After finally getting new insurance, learning that nursing would not be covered was quite a surprise. Thankfully, as we now know, it did work according to God's will.
I'm thankful for all the people that cared enough to follow this past year's story. I'm amazed at the numbers, but glad to have my story available for everyone. I can't guess at this point what will top out in 2015. One change I'm hoping to do is add more pictures or video. Looking at a solid block of text can be intimidating. We'll see what the first few week of the year brings in the quad life.
Subscribe to:
Posts (Atom)