Tag: Life

Time

Baby Boy had his first trip to the beach today. Amanda and I had originally planned to spend more time on the water while on vacation. I would have enjoyed laying on the beach reading all week. However, the weather didn’t cooperate the first few days. Likewise, soon after we arrived in Panama City Beach we found that there are not many easy access points out to the beach for those with disabilities.

This does not make me upset. I am used to living in a world that was not made for people like me. It was difficult to get to and from the water today, but I would not have missed it, as I got to watch Baby Boy’s reactions to waves lapping at his feet. I also was able to witness his curiosity as he touched the warm, powdery sand. He often tries to figure things out. It is fun to see the wheels turning in that little head of his.

I think Amanda, Baby Boy and I got a little too much sun today, as we all were a bit tired after we came back from the beach. After washing most of the sand off of us Baby Boy and I settled down for a nap.

One day at the beach was enough for us. I know it was for me at least. I’ll be washing sand off of my body and out of my mouth for the next few weeks.

We still have a couple days in Florida. It has been good to leave the routine of home behind. Likewise, it has been good to connect with family that we don’t get to see very often. It has also been an important reminder that time is fleeting.

Sometimes we let frustrations get the best of us and we lose sight of what is most important. Time is very precious. We shouldn’t waste it by getting hung up on things that do not matter in the long run.

I am glad I got to experience this time with family. We will have travelled over 2,000 miles by the time we get back home on Sunday. However, it was worth it to the see the world through a child’s eyes this week. We’d all be better off if we did this more often.

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Hello Again…

It has been quite some time since my last post. I just haven’t felt like writing for some reason. Perhaps, life has just been too hectic, or maybe I just have been a bit lazy. Sometimes, it is difficult to just stop and take stock of the things going on around you.

Life can seem fairly monotonous. Working from home, as I have been doing for over a year, has added to this feeling. Things seem to be slowy getting back to “normal.” I have returned to my office a few days a week. This has brought back some much needed structure to my life. Staying home everyday to work while I am in my pajamas didn’t seem to give me much of a purpose.

A lot has changed within the last year. Baby Boy is now walking and saying a few words, such as “dad.” Being a dad is such a wonderful experience. I have learned a lot about myself. In addition, I think I have learned the entire catalog of “Wiggles” songs. YouTube and Netflix come in handy when you are quarantined.

Amanda and I have been blessed with so much good. Despite, challenges related to health, 2020 was a very prosperous year. It is hard to believe that we are almost halfway through 2021. God has been good to us, even when we have not taken notice.

I look forward to seeing what the rest of the year holds. We will be taking a family vacation to Florida in June. I am excited to see Baby Boy play on the beach. I’m wondering what his reaction will be when he first sees the Gulf of Mexico. I’m sure we will build some sandcastles. Well, I’ll build and he will sit on them halfway through their construction.

Looking at life through the eyes of a little one has given me a new perspective. Everything is new and exciting. Nothing is left untouched. Everything has to be tasted, even cat food. Maybe life is not so monotonous after all. How can it be when every day is a new experience?

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Goodbye 2020!

The end of last year brought hope. Amanda and I welcomed a three-day old baby boy into our home. Since this time he has become a part of us. In two days this bright, smiling child turns 1 year old. We will have a party with family. There will be cake, smiles, laughter, and maybe a few presents.

It has been strange raising a baby during a time when the world is filled with such uncertainty. This year has had many ups and downs. However, despite all of this, life has gone on and everyone has remained relatively healthy. There is much for which to be thankful.

Amanda and I have great friends and a loving family. We have a baby who brings us so much happiness on a daily basis. It has been our great pleasure to become his parents. We feel fortunate to have been blessed with the responsibility of raising him and providing for his needs.

God has protected us through times of trial. This year has truly been a struggle at times. The isolation brought on by the pandemic has often been too much to handle. However, life is still good. I will be happy to see 2020 come to a close. I’ll carry the things I have learned this year into the next. One might think that the future looks bleak, and in a lot of ways it does. However, there is a light at the end of the tunnel. I am curious to see what the future holds. As we approach 2021, let us all treat each other with more love and understanding. Everyone has a burden they are carrying. Let’s make time to listen to others.

I recently had a friend reach out to me to share some things that were going on in his life. He expressed to me that he needed others to “do life with.” This is something we all need. The English poet, John Donne, writing in the 17th century, wrote that “no man is an island.” Hopefully, 2021 is a year we can reconnect with each other. Good riddance 2020!

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The Trash Bag Ladybug Monster

God usually teaches me humility in humorus ways. My latest lesson has involved showering. If you have been keeping up with my blog, you’ll know that I am currently undergoing treatment at home for a bone infection that I got through a wound in my foot.

I currently have an intravenous line in my right arm, through which Amanda administers antibiotics every morning. I also have a bandage on my foot that Amanda changes every other day. I am lucky to have such a loving wife that is willing to do this for me. However, she does like to have fun with me as well.

For instance, in order to shower I need to duct tape garbage bags around my right arm and left foot. This is to keep my foot dressing dry, as well as my IV line. The duct tape that Amanda chose for me has ladybugs on it, which look great with the black garbage bags. Once I am all suited up I look like the “Ladybug Trash Bag Monster.” I then “climb” into our shower, which is the size of a small phone booth. It is fortunate that my shower chair even fits in there.

Getting out of the shower takes a leap of faith, as I am never quite sure how I am going to stick the landing. This morning I gave myself a 9.0, as I did not fall. I also maintained pretty good form through the dismount from the shower chair.

After I am out of the shower comes the fun part, the removal of the bags. This involves ripping strips of hair off of my legs, and some hair from my right armpit. I am beginning to think I should just wax myself down. That way the agony of the tape removal would be lessened. In addition, I’d probably become more aerodynamic as I race through the house in my wheelchair.

Yes, I choose to laugh at these times. If I didn’t life would be a daily struggle. However, I know that God is there. Likewise, I know He sees my struggles. He uses these to keep me humble. I am often frustrated, but I take comfort in knowing God has never taken His hand off of my life. My duck tape with the ladybugs and those black trash bags are reminders that God has a sense of humor. He continues to care for me even when I fail Him.

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Progress?

Today marks the 30th anniversary of the passage of The Americans with Disabilities Act (ADA). This legislation gave equal rights to those with disabilities with respect to employment, transportation, public accommodations, government services, and telecommunications. I was 13 years old when the ADA became law. At that time I was too young to understand the importance of its passage.

I’m not a political activist. In fact, I shy away from politics as much as I can. Especially, today when there is so much that divides us as a nation. Likewise, I have always been a person that has adapted to my environment quite well. Therefore, when I was younger I did not feel impacted too much by having limited access to places and things.

I guess you could say I was used to living in a world that wasn’t made for a person like me. Moreover, for many years I felt I was too “normal” to fit within the disabled world, while being just disabled enough that I could never be totally accepted as “normal.”

As I have gotten older my mobility has decreased somewhat. With this I have come to realize just how important the ADA is for people with disabilities. Looking back it seems odd that a law like this was even necessary. Furthermore, the fact that it was passed just 30 years ago today is baffling. There are still far too many places that are inaccesible to those with disabilities. Likewise, according to recent data compiled by the U.S. Bureau of Labor Statistics, those with disabilities are still much less likely to be employed than those who are not disabled.

Working in social services I speak with many who are too disabled to work. Access to services for these individuals is often quite limited. I believe that those with disabilities are still often marginalized. Are those who are able-bodied fearful of those who are different? I believe many are, but I think there is more to the story as well.

People with disabilities need to advocate for themselves. For too long many of us have been silent. I include myself in this group. Relying on “big government” to cure what ails society is not the answer. We live in a time when a majority of politicians are more worried about mudslinging than they are in representing those who elected them. Yes, you can make your voice heard at the ballot box. However, you can also make your voice heard through social media, getting involved with an advocacy group, or work to educate those around you about the daily struggles those with disabilities face.

Living with a disability often means you feel as if you don’t belong. The world was made for those who can walk and talk without any difficulties. Barriers exist in everyday life that don’t exist for those who are “normal.” I wonder where we will be 30 years ago from now?

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Scars

Scars are ugly, at least that is what many people think. I would disagree. After having undergone dozens of surgeries, I have scars. I have them from the top of my head all the way down to my feet. While they are not things of beauty, they are reminders of healing. What once was torn is now mended.

At one time I hated the scars that line my body. However, the older I get the more they remind me of the battles I have fought. These are battles I have won. I know this because I am here to tell about them. Having surgery no longer frightens me as it did when I was a child. I must admit I kind of enjoy the feeling of anesthesia. It makes you feel like you are leaving your body just as you lose consciousness. Surgeries to me are just another opportunity to find victory.

This victory comes from knowing that my body will heal, as it has dozens of times. I know there will come a day when my body will give up the fight. The wounds will no longer physically heal. Despite this I will still have victory.

I have faith that I will be given a new body once I depart my earthly one. This new body will be free of scars. There will be no more pain or sorrow to endure. No more battles will need to be fought. I will be healed for an eternity.

So you see, scars are not ugly, they are what is left after healing has come. Likewise, they can be badges of honor if you choose to see them as such. If you are in a place where you are feeling defeated, look at your scars. You may have physical ones, or they may be mental scars. Let them remind you of the healing that has taken place. You’ll live to fight another day.

One of my favorite songs is by a band called Rush. The song is titled “One Little Victory.” To me this song perfectly captures what it feels like to struggle against the forces we often face. It is a song that helps to motivate me when I feel I am losing the battle. It helps to remind me that I have scars but that those are merely emblems of victory.

“One Little Victory”

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On the Road Again

If you have followed this blog for a while you know that I ride a hand-powered trike. It is something that I enjoy quite a bit. However, I’ve not been out for a while, as I have had some back pain. The problems with my back have greatly limited my mobility over the past few months.

Fortunately, I am beginning to regain my strength. Today, I went for my first ride since last August, or so the app that I use to track my rides tells me. It is difficult to imagine that it was the end of August last year when I stopped riding. I struggled today to get back into a rhythm. However, muscle memory is a great thing. It was not long before I was gaining back some of my momentum.

It was a short ride today. I did just under 4 miles. Last summer my average ride was about 10-12 miles. It will be a while until I am back up to those distances. I think for now I’ll just focus on building up my endurance. These last few months have not been kind to my body. I’ve not focused on my health in quite some time. Working from home and leading a largely sedentary lifestyle is what led to my back problems, I believe.

I hope today was the start of turning things around and becoming more active. I know my mental health could use a boost. Plus, it is fun to watch all the people stop and just watch as I go by, like I am some being that has landed here from another planet. I am just a guy who pedals his bike with his hands. If you see me out, give me a honk. Although, I may not hear you, as I usually am wearing my headphones. After all, I do have to be on standby in case the Mothership calls me back to our landing site.

Me on my “alien craft”
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Strange Days

If you are anything like me you might be asking yourself, “where have the last three months of my life gone?” Did we enter a time warp? It seems like just yesterday it was March, and today it is June. I think one thing that has seemed to speed up time is that we have lost a lot of the things that generally mark the months of the year for us. For instance, the whole world seemed to come to a halt on March 13, 2020, which was my birthday. Likewise, the professional baseball season has yet to get underway.

This is the time of year where teams either begin to go on a hot streak, or they begin to cool down after a lightning fast start in April and May. I miss turning on the radio and hearing the sounds of a Cubs game coming through the speakers. Baseball is a way to make sense of the world for me. Without it, every day just seems like a repeat of the previous one. I think it is that way with many things in life. We have our rituals and routines that help us structure our lives.

I must admit, it has been difficult to find new ways to bring a sense of order to life. I rarely have been behind the wheel of a car since I started to work from home in late March. In fact, I have not purchased a tank of gas for my car since February. The low fuel light is bound to come on one of these days, but who knows when. It has become sort of a game to me now. Likewise, I’ve not really worn a real pair of pants for at least two months. That might not be so much of a fun game when I do have to put on a pair of dress pants again.

I did visit my office this past Wednesday, but I felt very disconnected to the place while I was there. At this point, I think I’d rather just keep working from home. Why drive to work when you can be just as productive at home, if not more so? Plus, it cuts my commute time down from 9 minutes to around 2 minutes.

Not having attended church since March feels odd as well. Amanda and I do stream our weekly service through Facebook, but it just isn’t the same as meeting together in person. However, it is nice to stay in my pajamas and watch from the couch. Nonetheless, I do feel that I need the structure of actually physically going to church. Again, let’s just hope the pants fit once it is time to head back in person!

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The Tarantella

Recently someone asked us how our lives have changed since becoming foster parents. I don’t think Amanda or I have experienced any huge changes, other than we get fewer hours of sleep now. We are also not able to just take off on the weekends and go somewhere. Likewise, there is a lot more “stuff” in our house, such as a baby swing and toys. Finally, getting ready for work takes more time in the morning.

Starting out with a newborn was something we thought would never happen. However, Baby Boy has been very easy to raise so far. He is a gentle soul that seems to be happy most of the time. His smile is infectious.

Of course, for the first couple of months there were round-the-clock feedings, but that soon faded. He now is sleeping through the night, except for a few times here and there. I think Amanda and I picked up on his “non-verbal” cues pretty quickly. For instance, a demanding, unrelenting scream usually means he needs to poop. Watching this process is actually quite humorus, as there is a lot of grunting and contorting of the face.

When he wants to be fed, we usually hear a cry that is a bit less unrelenting than the “poop cry.” However, it is certainly enough to get our attention. Baby Boy is also very stubborn when it comes to burping. You would think we were asking him to go run a mile. He tends to stiffen up as flat as a board and starts to cry. This is when we talk to him gently to try and calm him down.

One thing that baby boy seems to enjoy is music. Just today we started to play music to help him burp. I think the song we chose is one we will stick with for a while. I am not sure why it popped into my head, but it is a song that is often played at Italian weddings. It is called the “Wedding Tarantella.” It is a pretty lively song, which probably confuses Baby Boy more than anything. However, he did not cry as he was burping today. The only problem we have now is that we feel like dancing while he burps.

Someday when he grows up I envision Baby Boy going to a wedding of an Italian couple. The “Wedding Tarantella” will play at the reception and he will be able to do nothing but burp. I hope I am there as well so that I can see what happens.

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Brought To My Knees

I have been brought to my knees. I mean this in both a physical sense and in a spiritual sense. Nearly three weeks ago my back went out. As someone who has spina bifida, this can present some serious issues. I have been unable to walk normally, as the pain in my back has radiated down my right leg. This has caused my knee to frequently give out when I attempt to walk. Fortunately, after a round of muscle relaxers, anti-inflammatories, and rest my body is finally starting to heal.

The day after my back went out I was told I’d be working from home due to the COVID-19 pandemic. This was really kind of a relief, as I haven’t been able to drive myself anywhere due to the numbness and pain in my right leg. I have always crawled around my house when I am home, as that is how I get around the quickest when I am not wearing my leg braces. Therefore, crawling to my workspace each day has helped me to avoid missing work days. Why drive when you can crawl?

As this pain has brought me to my knees in a physical sense, it has also brought me to my knees spiritually as well. Very few of us living today have ever experienced anything such as the “shelter-in-place” orders that various nations, cities, and villages have enacted throughout the past several weeks. It is difficult to stay positive when the world appears so chaotic. For instance, I was just reading a report from an epidemiologist from Yale University. This particular scientist believes there will be far more illness and deaths in the weeks to come.

Just weeks ago, life looked very different for all of us. Families were making their plans for spring break, birthday parties had been planned, and schools were preparing to head into their last few months of the year. Then all of these things just stopped. The world just stopped. We all have started to look at life in new ways. I am no different.

I have always been quite an introspective person. I tend to look at the lessons that can be learned through my experiences. I firmly believe God has been teaching me that I need to step back and analyze certain aspects of my life. He is working to change some habits of mine that are unhealthy. I am praying that in the next few weeks I will learn to listen when God speaks to me. Now more than ever I feel the need to stay on my knees.

I am thankful that God’s promises are true. I have failed Him many times. However, God has never failed me. Likewise, I feel fortunate that He has used this time to bring me to my knees. Why drive when you can crawl?

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