Peace of Mind

This week has been particularly challenging. Monday was fine. However, on Tuesday things got turned upside down a bit. Our Little Fighter went to the pediatrician to get some routine immunizations. When I came home from work on Tuesday, he was pretty lethargic and was quite warm.

After feeding him a bottle around 5:30, he turned an ashen gray and started having trouble breathing. Amanda rushed out the door with him and took him to the ER. I followed soon after. Thankfully, my mom was at our house so she could watch Baby Boy.

It was difficult to watch all of the poking and prodding being done to Our Little Fighter, as they began to run tests on him in the ER. I was wishing I could take his place with all of the needle pokes to his tiny body. I now can empathize with my parents who spent countless hours with me in the hospital when I was younger. It is frightening when something is happening over which you have no control.

Once all of the testing was done, acute respiratory distress was the diagnosis. However, we have no idea why it happened. Children born with trisomy 18 can have respiratory problems that can lead to sudden death. Therefore, Our Little Fighter was sent to OSF Children’s Hospital in Peoria for observation on Tuesday night. Fortunately, he was able to come home on Wednesday evening. However, we still don’t have any real answers.

Yesterday, he did fine here at home. Today, he seems to be doing better still. However, there is now always going to be a question as to if and when he will stop breathing again. Pray for peace of mind for all of us.

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”

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”

43

On Friday I turned 43 years old. Amanda made me one of my favorite kind of cakes using a recipe handed down through my family. We then had a nice dinner and spent a quiet evening at home with Baby Boy. It was a good day to celebrate the blessings that life has brought. However, it was also a day to remember a lost loved one.

March 13, 1989 was the day I turned 12 years old. It should have been a carefree day to celebrate getting older. Sadly, that was not the case. For you see, my dad had recently been diagnosed with myelofibrosis, a rare cancer of the bone marrow. On my 12th birthday my dad started treatments that were meant to try and stop the progression of the disese.

I still remember him waking me up that morning and wishing me a happy birthday, hugging me, and letting me know that he was sorry all of this was happening on my birthday. It certainly was not what either of us wanted, but that is often how life is. At times there is heartbreak.

My dad would not live to see me turn 13. The disease, with which he had been diagnosed, rapidly progressed into acute myeloid leukemia. This is what ultimately took his life on September 2, 1989. This was all too much for a 12 year old to process, which is probably why I still do not react to change very well in my life.

When I was born I know my dad was concerned with how I was going to make it in life. At that time people with disabilities were often marginalized, which still happens today. However, I think those who are disabled have begun to make progress. Many disabled people are employed, are married, and have families. I’d like to be able to speak with my dad today and let him know I have made it. His worry about me was for nothing.

My dad was 43 when he passed away. Now that I have reached that age myself, I see things from such a different perspective. I still feel like a kid in many respects. There is so much more living to do. My dad missed out on so many events in the lives of his wife and children. I still feel cheated that he was not there for graduations, weddings, and other important milestones. Despite this, life is too short to be bitter.

I don’t believe, nor have I ever believed that my dad is watching over us from some spiritual realm. However, I do believe when he died his soul went to Heaven. This is a place where there is no sorrow.

Therefore, he is not looking down on us and seeing the things with which we are struggling here on Earth. He is celebrating in a place where there is no pain. It brings comfort to me knowing he was able to leave his physical existence that was filled with agony. He had a short life here on earth, but his life in eternity is so much sweeter.

I hopefully have a lot of life left to live here on Earth, but I look forward someday to joining my father in that place where there is no sorrow. I just hope there is cake too!

My dad in his senior yearbook photo

Baby Boy

It is just past 2:00 a.m. as I write this. My thoughts cannot help but turn to how infuriating life can be at times. It is simply unfair. I just got done feeding Baby Boy. That is what I will call our foster child, as I will never divulge his name on this blog.

I am angry with this precious child’s biological parents. They are missing out on seeing him develop and grow. Amanda and I have had Baby Boy for nearly two weeks. In that time he has become more aware of his surroundings, he has begun to show pieces of his personality, and he has brought us happiness.

As I look into this baby’s beautiful eyes it infuriates me that there are people who seem to have no struggle at all bearing children. Amanda and I are unable to have a baby of our own. So, why is it so easy for people who seemingly couldn’t care less about the children they bring into this world? It is unfair! It is painful to know that baby boy may go back to parents who lack the ability to provide the things that he needs. We want to be those people in his life.

In the time we have had this child, we have grown to love him as if he was our flesh and blood. He is a sweet baby who has given us a desire to learn all that we can to be the best parents for him, even if it is just for a short time.

It is so difficult to wish for Baby Boy to be reunited with his parents. We don’t know them, but it is heartbreaking to think that this child whom we love will be given back to parents who may not give him the same love and support he needs to grow into a healthy adult. Life is unfair, especially for this little boy who needs two parents to raise him in a loving, caring environment.

Omphaloskepsis

As I’ve noted before in a previous blog post (see The Summer of Ryan), I enjoy the sitcom Seinfeld. I relate to the character of George Constanza, as I tend to be a bit neurotic at times. It is for this reason that my mind usually goes to extremes after I have had surgery. I worry that there will be complications that will delay healing, which has actually happened a few times after previous surgeries.

Today, I have had some chills and a low-grade fever. In truth, this is probably because I have become a little dehydrated. However, my mind instantly goes to the possibility of infection, despite there being no indications of this. Should I go to the ER, or should I just stay home? I often weigh these questions heavily. I also feel quite run down, but I guess that is to be expected a few days after having surgery.

It is difficult to be patient when you are the patient! I want to be back on my feet doing everything I could do a week ago before my gallbladder became my worst enemy. Despite this, I know that healing takes time. It is just a little frightening when your body is doing things it normally doesn’t do.

For instance, I had a blister inside my belly button that popped this evening. It almost appeared as if someone was trying to blow a bubble from my umbilical area. I was thinking this might be a new party trick that I could unveil at Christmas – “Step right up and watch me blow bubbles from my belly button!” I could even take this show on the road. I’m sure there is an audience somewhere that would appreciate my act.

Having surgery is nothing new to me. I have seen my body in much worse shape than it is tonight. However, the paranoia sets in when something unexpected happens. You’d think I would have learned by now to be more patient as the patient. However, at 42 my mind still wanders to the “what ifs.” What if I do have an infection starting? What if I will never be able to have another bowel movement? What if I feel like going to work on Monday, but I can’t get any pants to sit comfortably over and around my surgical wounds?

This is a busy time of year at work, and I am not there. How big of a stack of things are waiting for me upon my return? I would say probably quite a few.

These are all things that I will pray about. Life will go on and I am sure I will be back to my old routines soon. Until then I’ll continue to navel gaze. I’ll let you know if the bubbles keep coming. I am off to take my temperature…

Four statues which stand in the Louvre, depicting the fine art of naval gazing. I like the Greek word for this practice much better, which is “omphaloskepsis”

Postoperative

The past few days have put me through the ringer. It all started this past Sunday around 4 p.m. That unmistakeable knotting pain began to form just below my sternum. In the past I have had this pain, but it usually lasted just a few hours and it was gone. However, that was not be the case this time. I did not sleep at all on Sunday night as the tightness in my chest was relentless. It seemed like no matter what position I contorted myself into, nothing helped. I knew that I was having a gallbladder attack.

Fortunately, I was off work on Monday due to Veteran’s Day, as most of my time would be spent in the ER. I checked in there around 6 a.m. on Monday where they ran blood cultures, did x-rays, EKG’s, and then sent me home with a prescription for acid reflux medication. I was kind of dumbfounded. Here I was doubled over in pain and I was sent home with instructions to come back if I started feeling nauseated or feverish. At this point the doctor knew that I had gallstones, as the x-rays had shown. However, I was supposed to wait three days before seeing a general surgeon. Perhaps, I did not express succinctly enough just how much pain I was experiencing.

After stopping by the pharmacy and getting the prescription for acid reflux medication, a problem that I didn’t really have, I went home laid down and tried to get comfortable again. However, this was not to be. I did start to feel nauseated. So, just a little over an hour after leaving the ER, I went back and was not going to leave until my pain was addressed. Finally, I made some headway with the ER staff and I was was given some morphine. This allowed me to get some rest as I waited an inordinate amount of time to hear what was next on the docket for treatment. I was sent for more tests, and then it was finally decided that I would be admitted. That was with the caveat that I may or may not have surgery the next morning. I would be put be on the surgery schedule, but only tentatively. They’d get to me if they had an opening on the schedule.

I understand that my case was not critical. I also am aware that most surgeries are scheduled at least weeks in advance. Likewise, I don’t believe that my condition was critical. However, to have to “fly stand-by” while I was in so much pain was not a comforting feeling. It was also frustrating to know that I was truly not listened to the first time I visited the ER. I was having a gallbladder attack, not a problem with acid reflux!

Fortunately, as noted above, I was finally admitted and was kept comfortable throughout the night with morphine. However, I did not get much sleep, as I was connected to an IV, heart monitor, and an oxygen mask. I understand that since I was taking a very potent narcotic, the nurses were interested in keeping a close eye on my respiration. However, with no sleep on Sunday night and very little sleep Monday night, I was at my wits end. The only positive at this point was that the pain in my chest began to fade away early Monday morning. This is good because much of Monday was spent waiting to hear if they could “pencil me” in on the surgery schedule.

I will say that all of the nurses that I had were very caring and professional, but I found there to be a lot of disorganization throughout the whole process from the ER all the way up to the time of my surgery. Feeling that things were not being orchestrated very well behind the scenes produced some anxiety, which is never a great thing when you are in the hospital.

It was around 2:30 on Tuesday afternoon that I was finally wheeled into surgery. Having surgery is not something that scares me. I have had around 30 different procedures throughout my life. So, I know the process once an individual gets to the operating room (OR). The nurses have you transfer to the rock-hard OR table. They then drape warm blankets over you. These actually feel like a little bit of heaven, as the OR is usually the same temperature as a meat locker. I am sure this is to help negate the heat that radiates from the enormous lighting fixtures that are mounted over the OR table.

A mask is then usually placed over your face that is pumping oxygen. Then, in order to put you under for the the procedure, the general anesthetic is sent through the mask. This sends you into a euphoric state that quickly fades while you slide into unconsciousness. I do enjoy that euphoric feeling. It is just too bad that does not last for very long. It seems like almost no time has passed until you are once again awake. That is when the pain from the procedure sets in and seems to get worse before it gets better. That is where I am today.

Currently, I feel as if I have gone a few rounds with Muhammad Ali while he was still in his prime. To have laparoscopic surgery where your gallbladder is removed through your bellybutton is an unusual thing. I don’t like to have my bellybutton poked, much less to have it cut open. I am sure that this too shall pass, as the pain from other surgeries have. It just always seems when your body is healing that it will never get back to the state where it was before. I am ready to be able to move again without pain. No more surgery for me for a while. I have had my share.

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