My youngest son has Catel-Manzke syndrome. It’s one of those strange syndromes doctors have little information on. There have been about 23 known cases of the condition. That really isn’t all that special as there are likely thousands of syndromes children can be afflicted with that only affect a small number of the population.
Overall, it’s a skeletal condition which shouldn’t impact his mental development. With that said, he struggles with a few other issues we don’t have an answer for. His weight gain was slow and it was a struggle for him to eat. He was hospitalized and a g-button was implanted. During the day and at night he is connected to a feeding pump. It is filled with baby formula which is pumped directly to his stomach. It has helped with his weight gain.
He also struggles to breathe and had a tracheostomy in September of 2014. He still struggles a little when sleeping and has to have oxygen at night. He’ll soon require positive air pressure pumped into his trach when he sleeps.
Finally, he has poor muscle tone. When most babies his age are working on crawling and standing, John is still trying to master sitting up without assistance.
Our routine consists of weekly appointments, around the clock nursing, and very little sleep.
Our two bedroom apartment and 5-passenger sedan are becoming too small for ourselves and his equipment. His machines are loud and make it difficult to sleep at night. We’ve moved his bed and equipment into the living room to make it easier for medical staff when they’re available for a night shift. When someone isn’t scheduled, my wife sleeps in the recliner next to him in case his oxygen levels drop or he requires suctioning for his trach.
We’re often told “You’re an inspiration to many with how you and your wife hold it together and remain positive”. I hear this and think “Really?”
A war is comprised of a series of battles. In order to win the war, your side needs to win more battles than it loses. This is much like my daily struggle to find the good in a series of negative circumstances. There are days where I win, and days when the darkness wins.
My weakest points are often at night when I’m alone in bed while my wife stays with John. The darkness creeps in, penetrates my soul, and overwhelms me. The despair is great, but it is often during times of darkness and despair where light has the opportunity to shine the brightest. Light that is often obscured by the haze and fog of meaningless distractions and the din of self pity is no longer hidden, and is instead magnified. Consider it like looking at the night sky within a large city. Constellations are often obscured, but it is only when you’ve reached a point from the farthest city lights are you able to enjoy the wonders of the Creator against a blackened sky.
Seeing this light brings joy in abundance and optimism; optimism for better things to come. It often takes periods of intense trials to illustrate the contrast between light and darkness. You’re given a choice; accept defeat or continue fighting.
Accepting defeat means that you have given yourself permission to wallow in your own self-pity. You need not accept responsibility for your actions. It’s the world that owes you, not the other way around.
People who accept defeat can become bitter. They’ll blame doctors, family members, and God. “If God were real, he wouldn’t let this happen.” I’ve heard that more and more as I get older.
I’ve been at, or close to that point a few times. I can count two times this year. The first was when John was born. He had a few anomalies. Testing was needed. His feeds were slow, and his doctors were concerned. He remained in the hospital for two weeks. I started to lose hope, but finally we saw progress and he was released.
The second time came in May. He was experiencing weight gain issues and required a g-button procedure. Even then he wasn’t gaining weight. After weeks of observation and adjusting his feed rates we finally saw progress. Before progress I started losing hope again. I kept thinking, “This is a test, something large and fantastic is about to happen”, but it never did. I didn’t see a miraculous over-night change. Instead I saw little changes. One day his weight increased. It was very slight, but it increased. This repeated until he was finally at the level they desired and he could go home.
I started to realize that life wasn’t all about looking for large, miraculous occurrences. It came down to the little things. Add up a few “little things” and you end up with “larger things”. Start looking at all the positive influences, and you’ll have less negative influences to deal with. Think of it as a bank of account. The more you add, the better your account balance. Negative issues can be covered with the surplus in your account. Drain your account without adding deposits, and be met with a “negative balance” which leads back to perpetual darkness.
In August John needed to have a sleep study. It was something he needed back in May, but was finally scheduled. He had his study in Houston during the last week of August. He failed it. He failed it so bad that the hospital wouldn’t let him leave until he could be sent home with a CPAP. What was to be an overnight stay turned into 3-days. This time my reaction was different. I wasn’t mad. I looked for the positive. They discovered he had an even larger problem and were working to fix it.
After a follow-up appointment it was determined he would need a tracheostomy. His overnight breathing was so poor that it was the only option left. He had surgery on September 30th and remained hospitalized for two weeks, which is standard for his procedure. We didn’t encounter any surprises, and he began to improve. Again, I wasn’t mad. I was grateful that his breathing would improve. Perhaps his energy level would increase too. I was fully prepared for the worst, just in case. I treated his uneventful procedure as a blessing which added to my account balance.
At the beginning I said it’s a daily battle. It really is. Do you think I’m happy all the time? Nope. I have good days and bad days. I just need to make sure I fight the good fight and have more good days than bad. I need to win more battles. I have to look for the positive influences like my family, church, and employer. They have all supported us in ways I could never imagine. This gives me more blessings to add my account which helps to cover those expenses associated with my on-going war. I also try to make sure I see the contrasts between the light and darkness.
I believe in God.
You may ask, “How do you still believe in him if you’ve been met with these challenges?” Well, before all of this happened I asked God to make me a better person. I asked him to please refine me and illuminate my faults. It was a daily prayer and this is what has happened. He refined me like gold. I’ve been melted down and the impurities pushed to the top. My family and friends would have to be the judge of the end results, but I feel more prepared for difficulties. I’ll also admit, he’s not finished, and never will be. I know there are even more challenges down the road.
I can say that petty issues are no longer what plague my thoughts. What may infuriate someone else seems to have little impact on my emotions. I simply consider the issue to be a temporary nuisance. I see most challenges as temporary. My level of empathy has also increased. I can relate to another’s plight. It’s not that I couldn’t before, but I’ve since experienced a different level of struggle.
If I were to explain my outlook in three points, I would use the following:
- To be happy, you must be grateful.
- Every problem is temporary.
- Each trial is a refining process.
You have to stay focused on each battle, not the overall war. Every little victory counts towards the overall goal.
Stay positive, count your blessings, and learn from your challenges. You’ll be a better person in the end.