Fasten Your Seatbelts, It’s Going to be a Bumpy Ride!

A common problem for those who were born with spina bifida is infertility. This is an issue that can cause a lot of frustration and heartache. Amanda and I have undergone various tests and procedures in order to try and conceive a baby. However, nothing that we have tried has proven successful. Therefore, after much thought and prayer we have decided to take on the challenge of becoming foster parents. We hope that this will lead to adoption in the future.

We have taken classes in order to become licensed foster parents in the State of Illinois. I can say that these classes have not been very fun, as a lot of the material is fairly dry. Also, a lot of it is common sense, as Amanda and I were both raised in homes where good parenting was modeled. Despite this I think it has been a good experience, for it has given us insight into various things. For instance, we have been exposed to the types of issues children who are placed into foster care have when they come into a new home.

Having worked as a high school guidance counselor for several years, I am aware of the problems that children can have at home. I have spoken to students whose parents are alcoholics or drug addicts. I have also seen kids who have been abused or neglected. Seeing these things firsthand has made me a little apprehensive at times in taking on the challenge of fostering a child. However, I am also excited about the experiences that are in store for Amanda and I.

Do I think it will be easy? No, in fact, I am sure there will be days where I will feel like throwing my hands up in frustration. Will I ride away on my bike to get away from the situation as my mom once did when my brothers and I were fighting? That is a distinct possibility, but I’ll always come back, as I am not a quitter. Oh, and by the way, if you know my mom, you should ask her about the bicycle story. It is one of my favorite memories to look back on and remind her of on occasion.

Anyway, I am sure once we are through the licensing process things will start to move fairly quickly. However, I know that with God’s help we can make it through the challenges that we will face. I am just hoping our cats don’t go into hiding on a permanent basis.

When The Moon Hits Your Eye Like a Big Pizza Pie…

It has been far too long since I have posted anything here. However, that is about to change. October is Spina Bifida Awareness Month. Throughout October I plan to post various pieces of information about spina bifida. I will give you facts about this birth defect. I will also provide some of my own experiences that relate in some way to these facts. To that end, today I will provide you with one of the most challenging aspects of living life with spina bifida.

Many people with spina bifida have limited bladder and bowel control. This can present challenges not only for those of us who work full time, but also for those who enjoy being active socially. Perhaps, one of the best illustrations of how challenging all of this can be is a story that I haven’t shared with too many people. I hope it is one that does not offend. However, one of my goals with this blog is to be as genuine as possible.

Amanda and I had been seeing each for several months when we were out one night on a date. We had decided to go and get some pizza. After that we had plans to go to a movie. The pizza place we chose was one that neither of us had ever tried. That perhaps was the first mistake of the evening, as the pizza was very greasy and not very appetizing. Despite this we were just enjoying being together. We finished our pizza and then decided we’d go grab some snacks that we could sneak into the movie. As we were at the convenience store picking out our treats, my stomach began to rumble. If you have ever seen the movie Dumb and Dumber, just picture the scene when the character Harry unknowingly ingests a laxative and then experiences a serious bout of gastric distress.

My stomach was making all sorts of noises and I knew it was time to get to a restroom. However, I decided that I could wait until we got to the theater before I took a pit stop. This was not very wise, as I did not quite make it to the restroom before the floodgates opened. While I had made a beeline to the restroom, Amanda had picked up our movie tickets and had headed into the theater.

So, there I was in the restroom, trapped! This was one of the most sinking feelings in the world. How was I going to get myself put back together after having messed my pants? I had no spare outfit with me. Maybe I could just spend the rest of my days in the stall of that men’s restroom. I certainly couldn’t face Amanda. However, I plucked up my courage and sent her a text letting her know what had happened. She then proceeded to get a refund for our tickets, while I sheepishly made my way back to the car. Fortunately, we were not too far from a clothing store where I was able to replace my soiled clothing and once again make myself presentable to the world.

It was this night that I knew Amanda was the one for me. She acted like it was no big deal, although I am sure she must have been mortified. It was a freeing feeling knowing that despite all of this she still wanted to get to know me better. She had many chances to make her escape while we were still dating, but she has always stuck with me. We just celebrated 7 years of marriage in August. I am very fortunate to have met someone who still loves me despite the difficulties that spina bifida can present.

These challenges often make me feel less than manly. It is frustrating to know that I always have to be on guard, as my body works differently in so many ways. Fortunately, Amanda and I can both see the humor in events such as the one described above. If you can’t laugh in these times, life would be very bleak. There are always ups and downs. I am just glad to have someone with whom to ride the roller coaster.

My Dad

My dad died on September 2, 1989.  It has been almost thirty years since that dreadful morning.  My brothers and I were up past midnight when the phone rang.  It was my mother calling to tell us that our dad had passed away.  She was with my dad while he took his dying breath.  My two brothers and I got into my dad’s pickup truck and drove to the nursing home where my dad had spent the last few weeks of his life.  My brother Shannon refused to enter the room where my dad’s body lay, however, my brother Cory and I went in and saw him for the last time.  It is something that I regret doing, as I will never be able to erase the image of my dad’s lifeless body from my mind.

That morning is one that will stick with me as long as I live.  I can remember how it felt outside that morning.  I remember the smells in the nursing home, and I can remember the feelings of fear and uncertainty as we returned home.  What would life be like for all of us now?  What would it be like to live the rest of my life without a father? 

The months that preceded my father’s death were just as frightening.  At that time I wished I could just fast forward through it all and be an adult.  Here I am almost 30 years later.  I am now an adult.  I still have dreams on occasion that my dad is still alive.  I then wake up and am angry that he is not here. 

I feel as if my brothers and I were cheated.  We had to grow up without a dad who could show us how to be men.  My mother was cheated out of being able to grow old with the person that was the love of her life.  However, my dad was a man that took care of things before he died. He was always a man who was financially responsible.  Therefore, he left my mom without debt that she would have to carry while she tried to pick up the pieces for all of us. 

Being only 12 years old when my dad died, I never really got the chance to get to know him properly.  I do have good memories of him though.  There were times he would get home late from work on a Friday and we’d order pizza, although I was usually too tired to stay awake.  I also remember my dad being a hard worker.  He was a skilled welder and he provided well for my family and I. 

He also had a great sense of humor.  There were many Saturday nights spent around the dinner table while he told us stories of his life growing up, or about his days in the navy.  My dad was an honorable man.  He treated others with respect, and he was always willing to help a friend.  When he died there were hundreds of people that came to pay their respects.  Many of them recalled that he was a man of integrity.  My dad was not perfect, but he was an honest man, who worked hard to make a better life for his wife and children. 

This coming March I will be the same age my dad was when he died.  It is hard to imagine dying at such an early age.  I still feel rather young.  I have so much more living to do.  Why my dad couldn’t stay with us longer, I don’t know.  However, I can say that he was a man that I respect and that I will one day see again.  That brings comfort on days like this when we celebrate fathers.  My dad is in a place where there is no sorrow and where there is no pain.      

My dad with his 1940 Chevy Coupe. I remember watching him work in his garage restoring this car. My dad was able to fix just about anything.

Memorial Day

“Those who do not learn history are doomed to repeat it” – George Santayana

Travelling is one of my favorite things to do.  It is always enjoyable to go to unfamiliar places and experience new things.  A few weeks ago Amanda and I flew to visit Washington D.C.  This is a city that we had been to before.  However, because I love history so much, it is a city that I could visit time and time again.  The city is full of memorials to past presidents, fallen soldiers, and those who have helped lay the foundations of the United States.  It is also a place where one can see the buildings where the gears of our republic spin. 

The last time Amanda and I travelled to Washington D.C. we only had about a day and a half to try and squeeze as much sightseeing in as possible.  However, on our latest trip we had four days to explore the city, which was still not enough time, but it was a memorable time nonetheless. 

We got to visit some of my favorite sights in the city, such as the Lincoln Memorial and the Vietnam Memorial.  These are two places where one can feel both pride and sadness.  The Lincoln Memorial to me is such an awe-inspiring sight.  The statue of Abraham Lincoln, who was perhaps our greatest president, is such a beautiful sculpture.  It is a peaceful place where people are quite reverential as they pass through the great marble hall where the immense statue of Lincoln sits. 

This is a place where one can take in just how perfectly laid out the city is in relation to how the buildings and monuments are situated.  Looking out from where Lincoln sits, one can see the Washington Monument, which is reflected in the pool that sits in front of the Lincoln Memorial.  Lined up perfectly with the Washington Monument and the Lincoln Memorial, is the U.S. Capitol building. 

View from the Lincoln Memorial out the Reflecting Pool

Just a short distance from the Lincoln Memorial is a site that brings me great sadness when I see it.  That is the Vietnam Memorial.  This is a giant wall sculpted out of highly polished, black granite, on which all of those who lost their lives during the war are inscribed.  This is a stark reminder of how senseless war can be.  The names of more than 58,000 men and women are inscribed upon this slab of granite.  They will never be forgotten.  Being at this site on Memorial Day was a very poignant experience, as we got to see some of the men and women who did make it back home.  They were there to honor their friends who were not so fortunate.  I respect the sacrifices that all of these people made to serve a country which often did not welcome them back home with open arms. 

The Vietnam Memorial

Amanda and I were also able to visit the World War II Memorial.  This is a beautiful place, where one can’t help but reflect on all the people who fought to liberate Europe and other parts of the world from the evils of the Third Reich.  I am glad that we were able to be there to see these sites on Memorial Day, a day which Americans honor those who have died for the cause of freedom. 

I think one of the places that everyone should visit while in Washington D.C. is the U.S. Holocaust Memorial Museum.  One must visit this place to keep the memory alive of those  who died under the evil oppression of Adolf Hitler.  I am dumbfounded that there are still people who deny that these events ever took place.  Hitler and the Nazis were proud of what they were trying to accomplish and therefore were pleased to document the atrocities which they were committing.  There is no denying theses facts.  Over six million Jews were killed because they were thought sub-human. 

These two pictures speak for themselves

Being a person who is disabled, it also infuriates me to know that I would have been included among those whom Hitler thought of being “less than human.”  This was a shameful time in history, where many lives could have been spared, if the world would have not turned a blind eye to the suffering of those in Europe.  This includes the United States, who denied entry to thousands of Jews simply because we didn’t want to deal with an influx of refugees who needed a safe place to live.  It is shameful to know that genocide is still taking place in different parts of the world.  I strongly believe that every human was created in the image of God.  Therefore, we should treat each other with love and respect.

As often happens when I am in a city in which I am unfamiliar, there are those who do live up to the standard of treating others with love and respect.  I had many people willing to help me as I wheeled my way throughout the city.  For instance, as I was rolling along, making my way to the Lincoln Memorial, I was asked if I needed help getting up a rather steep incline by a woman who I assume was just resident of Washington D.C.  This woman appeared to be out for a jog, but she took some time away from her run to push me up a hill and into the area where I was able to catch the elevator up to see the statue of Abraham Lincoln.  I don’t know this woman’s name, but she showed me compassion, to which I was very thankful. 

Washington D.C. is a very accessible city to those with disabilities.  Every metro stop had an elevator down to the subway.  Likewise, every train was even with the platform, which made rolling into the train car very easy from my wheelchair.  Moreover, most, if not all of the monuments and museums have ramps or elevators, which make access very easy.  Finally, the city busses, which are free for everyone to ride, all have ramps which allow easy access for wheelchair users.   

The Metro system in Washington D.C. is top notch. Plus, each tunnel reminded me of my dad’s workshop as I was a kid. They all smelled like the welding rods he used. I am sure this was from the hot wheels of the trains running along the electrified tracks.

  One final event that made this trip so memorable was being able to visit Arlington National Cemetery, where many fallen soldiers are buried.  Arlington is also home to the gravesites of John F. Kennedy, along with his brother Robert F. Kennedy.  However, the most moving part of this cemetery is the Tomb of the Unknown Soldier.  Amanda and I were fortunate to visit the cemetery on Memorial Day where the Vice President of the United States, along with other dignitaries spoke, honoring those who have died fighting for the United States around the world. 

Vice President hiding behind a teleprompter during the ceremony at Arlington National Cemetery on Memorial Day 2019.

The Orphans

“Call it a clan, call it a network, call it a tribe, call it a family: Whatever you call it, whoever you are, you need one.” – Jane Howard

I always wanted to marry an orphan.  Little did I know, so did my wife.  We both had the same motive for wanting to marry an orphan.  Neither one of us wanted to be obligated to spend holidays with another family. Amanda and I have been married for nearly seven years and I think there are times when we both still wish we had married an orphan.

My wife grew up in St. Louis, which is approximately 250 miles from where we now live.  Therefore, when we travel down to St. Louis, we are in the car for at least 4 hours each way.  Throughout most of the trip the only thing you see are corn fields, and the occasional truck stop. 

Going to family functions in St. Louis is quite different than the ones to which I am accustomed.  Each of Amanda’s parents are one of eight children.  Therefore, there are dozens of aunts, uncles, and cousins.  I love my in-laws very much.  They are both very giving people.  In the dictionary next to “hospitality” are pictures of Amanda’s parents, Dan and Judith.  At each major holiday they invite everyone over.  There are usually 40-50 people at every gathering. 

I believe the first holiday that I spent with Amanda’s family was Easter.  I was shell-shocked to be with so many people under one roof.  This is because while I was growing up my family gatherings were much smaller.  However, I have grown used to these large gatherings.  I enjoy playing games, eating, and just spending time with everyone.  However, for an introvert like me, these events do sap my energy. 

Amanda’s first introduction to my family was at my 34th birthday party.  I think for her, it was hard to adjust to being with such a small group, where more attention was focused on her.  She was no longer able to blend into the woodwork.    

This Easter we will be spending time in St. Louis.  I just wish one of us had our pilot’s license so that we could fly down.  It would enable us to visit more often.  Amanda gave up a lot when she moved to the barren wasteland that is Northwest Illinois.  I know that she misses seeing her family.  However, I am glad that we met, because she is the perfect woman for me.  She is a kind and loving woman. 

I am glad that we both were willing to expand our horizons.  We both come from great families.  It has been fun getting to know Amanda’s clan.  Amanda’s dad is a great storyteller, and her mom makes some of the best cookies I have ever tasted.  I am thankful that I did not marry an orphan because I would have missed out on the love Amanda has shown me.  I too would have missed out on becoming part of a great family. 

Spina Bifida Blues

Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I think it is safe to say that most, if not all of us feel down at times. What do you do when you feel like this? I have to be honest, there have been many times when I have felt despair. This despair is something that has made me feel alone. I have been afraid to share my true feelings, even with those closest to me.

Some of this has been brought about by my feelings of inferiority, which I have touched upon in previous posts. I often feel as if I am not good enough for anything or anyone. These feelings often lead me to doubt myself in almost every facet of life. Many days I go to work worrying that I am going to “screw up” or forget to do something.  I believe one of the things that has fueled these feelings of insecurity is that others have often “talked down” to me as if I am too stupid to communicate just like anyone other person.  My legs don’t work correctly, but my brain functions pretty well.  Just don’t ask me to do math! 

This doubt can be paralyzing. Fortunately, I have reached out to others who have helped me begin to see myself in a more positive light.  Counseling has shown me that I do have things I can contribute to society.  It has been a positive experience sharing my doubts and insecurities in a therapeutic setting.   

Writing this blog has also been a cathartic experience, as it has helped me unleash some of the “demons” that rule my thoughts.  Likewise, the power of prayer has also been very instrumental in helping me get over some of these irrational fears.  I must be honest there have been many times that I have lashed out at God for “placing” me in this body.  

Humor is always good medicine as well.  I have learned over the years that you have to laugh at the circumstances of life.  This helps one move past the bad and appreciate the good things that life has to offer.  I wish I could go back and tell my younger self to shut out the negative thoughts and focus only on the good.  That is a lesson that I am just now learning as a 42 year old man.   

Finally, it is important to keep active.  Now that the weather here in Illinois is getting warmer, I will be outside cycling away my blues.  

Brothers Don’t Shake Hands…Brothers Gotta Hug!

Today is National Siblings Day in the United States. This unofficial holiday is also celebrated in other parts of the world. I am thankful for my two older brothers, Cory and Shannon.

Over the years they have put up with a lot having me as their brother. For instance, there were many times they were sent to stay with relatives as my parents and I made our way to yet another hospital visit.

I am not really sure they minded this all that much. They were certainly spoiled by my grandparents, or my aunts and uncles whenever they were exiled to stay with family.

However, I really wonder how it was for them when they were younger. I would assume it was difficult having to be uprooted from their normal routine. I know that it would have been for me.

Growing up I was always closest to my oldest brother Shannon. My other brother Cory used to pick on me quite a bit, which, as I look back on things, was quite normal.

Now that we are all grown and have our own families, I respect the men my brothers have become. They both have married great women and have fathered some very good kids.

I wish I could see my brother Shannon and his family more often, but they live in New Jersey. It would be fun to spend more time with his family. He does still watch out for me, even though we are hundreds of miles apart.

My brother Cory still looks out for me as well, helping my wife Amanda and I do things around the house. He is always willing to lend a helping hand.

I love both of my brothers very much. I even forgive them for all of those times we were in the car and they’d pick on me. I would then get in trouble for being a whiner. I should have learned that sitting in the middle of the backseat made me a good target. I maybe could have asked to ride in the trunk instead! Anyway, if you haven’t done so already, reach out to your siblings and tell them how much you appreciate them.