Punching Clouds

There are times when words or phrases I hear will get stuck in my mind. For instance, the other day I was listening to one of my favorite podcasts and the host used the phrase “willful incontinence.” The twelve-year-old boy that is still inside of me got a good laugh from that. My mind instantly began to wonder how I could work that into a blog post. My mission has been accomplished! But seriously, that is not what this post is about.

I’d like to share another phrase that came to me today as I was watching Our Little Fighter play on the floor. He has a little mat that he can lay on that has various age-appropriate toys suspended overhead. One of these items is a cloud with eyes. As I was watching Our Little Fighter, he reached up and “punched” the cloud. He reminded me of a boxer using a punching bag while in training. Furthermore, it reminded me that I too have a few of my own “clouds” that need a good thrashing.

Those of you who read my blog on a regular basis know I have been battling some health problems lately. With these have come some dark mental clouds. However, I am a fighter too.

I just needed a reminder to keep “punching” the clouds. They are small compared to the good things in life. You just need to have a childlike faith. I’m fortunate to have reminders of that on a daily basis.

Dazed and Infused

I have become an IV drug user. It was just a matter of time before it happened. Fortunately, I am not hooked on heroin or cocaine. My drug of choice is meropenem. This a powerful antibiotic that will be treating the osteomyelitis in my left foot. I will be giving myself infusions through a port in my chest for the next five weeks.

I also came home from the hospital with a wound vac on my foot. This device suctions to my foot and sucks any drainage that might seep from the closed surgical wound. The vac when doing its job sounds eerily like a velociraptor that is about ready to pounce. So, I am now basically a member of a chain gang that is being chased by a deadly dinosaur.

Steven Spielberg, if you are out there, give me a call. I have the story for your next summer blockbuster. Middle-aged man with spina bifida chained to a medical device that sounds like it is about ready to disembowel him. This movie will shatter box office records.

Who should star as the leading man in this story? If you have any ideas drop me a reply. I’m off to take a nap. Hopefully, I will dream of further details for this film. I can smell that Oscar now!

The Patient Who Lost His Patience

I surely must be in the midst of a nightmare. It is 1:45 a.m. and was just woken up by a nurse requesting that I “sit up” and “sign a consent form for surgery.” Oh, and while I am at, I also need to complete a “risk assessment for anesthesiology.” This couldn’t wait until sunrise for me to complete?

I am having surgery today. This will be my third procedure in a week. I have osteomyelitis, which is an infection in my bone. This past Wednesday I had a surgery to remove some infected bone from my left foot. Yesterday, I had a procedure to close the wound on my foot. This morning I will have one to put a port in my chest, through which I will receive IV antibiotics for the next 6 weeks.

Don’t let anyone fool you. Hospitals are not a place where one goes to rest. I actually have had very little of that since Wednesday.

I am quite certain I didn’t really need to fill out a risk assessment for anesthesiology. Especially, since I have done two of these with an anesthesiologist in the past week. However, I was too tired to argue. I could have asked to speak to a supervisor, but it is too early for me to put up a struggle. So, I signed the consent and completed the assessment.

I wonder if nurses are even made to play the patient while they are in school? If not, perhaps they should be. For the most part I’ve had very empathetic nurses this past week. However, there have been a few who could learn some things about patient care.

Having been in and out of the hospital quite a lot over my 45 years, I have seen it all. Perhaps, I should start a side hustle as a “professional patient.” I could consult with hospitals as to the quality of the care they are providing.

However, for now my patience as a patient has petered out. I am actually looking forward to surgery. Maybe I will get some sleep in the operating room. If not, I might need to conduct my own “risk assessment” with the anesthesiologist.

One Little Victory

I am a fan of the Canadian rock band, Rush. One of the last albums they made before disbanding was an album called “Vapor Trails.” Perhaps, my favorite song from this album is “One Little Victory.” The material on this album deals largely with the healing process their drummer went through after some very dramatic losses in his personal life.

For example, the song “One Little Victory” addresses how hard it can be even living from moment to moment when you are experiencing periods of grief. In my struggle with depression over the last few years one verse from this particular song often comes to mind:

Celebrate the moment as it turns into one more/Another chance at victory, another chance to score/The measure of the moment is a difference of degrees/Just one little victory, a spirit breaking free

Sometimes it is difficult to see the forest for the trees, especially when your mind is clouded with the doubts of depression. Oftentimes, the only thing worth celebrating is a particular moment. Its these “little victories” that enables one to keep moving forward when the “big picture” cannot be seen.

I have been in the hospital for the last four days. Laying in a hospital bed for nearly a week can cause you to lose focus on the positives. Therefore, I have been looking for the “little victories” each day that will spur me on to getting back home.

For instance, tonight I learned that I no longer have to be hooked up to my IV unless the nurse is specifically running medications through for me. My veins, my kidneys, and my bladder are all thankful for the rest! It will be heavenly to go to sleep tonight not having to worry about accidently ripping a needle out of my arm! These “little victories” can feel huge at times.

Hopefully, within the next few days I can return home. I miss Amanda and our boys. Being separated from them is the hardest part of this ordeal. However, I am going to wake up tomorrow and look for at least one “little victory.” There is sure to be at least one.

Indestructible

The other day someone told me that they thought I looked like Superman. I must be honest, I did feel flattered. Superman has always been my favorite superhero. I’d love to be “faster than a speeding bullet,” and “more powerful than a locomotive. Likewise, I’d love be able “to leap tall buildings in a single bound.” However, the best part about being Superman is that I would be indestructible.

The older we get the more fragile we tend to become. My disabled body is more susceptible to the ravages of time and place. For instance, I am currently dealing with a wound on my foot. This has been a chronic issue for at least the last ten years. Having no feeling below my knees is perhaps one of the most challenging aspects of having spina bifida. Indestructible, I am not. I am no “Man of Steel.” This is probably just as well, as I’d probably not look very good in tights or a cape.

If you could be a superhero, who would you be? What superpowers would you like to have? Leave me a comment and let me know. I am off to defeat the hunger pangs of a snorting infant. That is one superpower that I do seem to have these days.

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.

Laying My Burden Down

I am scared. Life is full of ups and downs. One moment things seem to be fine. Then the next everything changes. In these moments writing has always been very therapeutic for me. Therefore, I am going to let my fingers do the talking today.

As I mentioned in an earlier post, Amanda and I have taken in a new foster child. This baby was born with the mosaic form of trisomy 18, which means some of his cells have three copies of chromosome 18 while other cells have two copies of chromosome 18. This defect in the cells can lead to a host of developmental problems. No one really knows precisely in which cells the chromosomal abnormalities are present.

Currently, Our Little Fighter’s only visible issue is a cleft lip, which makes feeding a little more difficult. His breathing is also a bit labored. However, he sleeps, poops, and pees just like any other baby. What scares me is that the prognosis for babies born with trisomy 18 is very poor. Only between 10-15% of children with this condition live past their first birthday.

Life has thrown a lot at us since December of 2019. That is when we first became foster parents. Shortly after that the world seemed to come to a standstill due to the COVID-19 pandemic. Through this period my work life has changed a lot. The office where I work has lost two employees to retirement. One transferred to another office. Three others left to pursue other careers. Then, this past Tuesday I found out the manager of my office opted for early retirement and was gone the same day. Needless to say, there is a lot of uncertainty in life at the moment.

I wish I could say I knew how to deal with all of this better. Fortunately, Amanda and I have great support from family and friends. However, the uncertainty remains. We have had our first foster child for over 2.5 years now. To us he is our’s. I love him like I never knew that I could. He is still a ward of the state officially, which scares me more than anything else. Any day he could leave us and be given back to his birth parents.

I have to put all of this in God’s hands. Mine are not big enough to carry this load. He is faithful and just. My head says to trust Him and His will. However, my flesh is so very weak. My middle name is Thomas for good reason. I am filled with doubt on a daily basis.

There is an old spiritual song that has been covered by musicians across several genres of music. I believe I first became aware of the song via a recording done by Mississippi John Hurt, a blues musician who passed away in the mid 1960’s. The song is about laying down the hardships of life now and focusing on the good that is yet to come, especially in a spiritual sense.

This is something I still struggle with on a daily basis. Just when I go to “lay my burden down” I pick it right back up again. Hopefully, one of these days I’ll truly realize my hands are not big enough and I’ll “lay all of my my burdens down.” I do believe better days are ahead.

Oh Deer!

I’m quite certain that our new neighbors think I am insane. What else could they be thinking after this evening? I just came back inside from using a sledgehammer on a deer lawn ornament. This is a “piece” we inherited when we bought our new house.

There were actually two, however, baby deer fit in our trash can and was hauled away this afternoon. Father deer is too big to fit inside the trash can in one piece. So, I thought I’d break him up into little pieces using a sledgehammer. As I was doing this, I could see my neighbor in her kitchen preparing dinner. However, I am certain she was also keeping an eye on me.

When I do things outside I usually roll around in a wheelchair. Furthermore, I dislike wearing coats, even when it is cold. So, I was outside, where it is quite brisk. I was wearing a t-shirt and wielding a sledgehammer from my wheelchair. Yes, someone would come and get this deer if I asked. However, I’m stubborn and I would rather take care of it myself. Plus, it is fun to wonder what the neighbors might be thinking.

Father deer is now headless and sitting in our garage. If anyone tries to break in it might be enough to frighten them away, as it looks like a headless dog laying folded up on the floor. He has met his match. I will be back out tomorrow with my sledgehammer, and possibly a sweatshirt.

The “Escape Room”

Have you ever just wanted to disappear for a bit so that no one could find you? I often find myself trying to “escape” for a few minutes of serenity. However, I’ve discovered this is next to impossible with a toddler. For instance, a trip to the bathroom by myself is rare these days.

The bathroom used to be a good place to escape and catch a few minutes of peace. Now, I usually have company. Fortunately, Baby Boy shuts the door behind us. The only problem is, there are sometimes he doesn’t want to open it when our time in the “escape room” has come to an end. It truly becomes a situation where I truly am desperate to escape from the “escape room.”

Maybe next time we go in I’ll teach Baby Boy how to clean. He already knows how to use the TV remote, so why not put a mop in his hands and put him to work. Perhaps, I then can escape to the bedroom while he is not looking. I certainly can find some peace in there. Oh wait, the cats are always in the bedroom!

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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