We all have had those struggles in life that hit you like a low blow and gives you that sick feeling in your stomach. I’m not talking about getting hit in the family jewels, this blow is the struggle that will change you for the better or worse. We had that low blow struggle about a little over four years ago with our daughter and this is where we are going to talk about my struggles, where I screwed up, and how it changed me for the better. 

The Low Blow Struggle:

My wife and I were blessed in 2018 with our beautiful daughter, Brindley. She was and still is the greatest blessing and we could not imagine our lives without her. We had the typical hiccups that every new parent has and of course we were hovering over her just because we had no idea what we were doing (like all new parents). When she was a few months old, my wife started having suspicions that she had a somewhat rare genetic disorder called Neurofibromatosis type one. 

Neurofibromatosis is an autosomal dominant disorder, meaning that only 1 copy of the defective gene is needed in order to cause the disorder. Neither my wife nor I are carriers of the defect, so I, as a typical dad, blew off her concern. I figured that she was just  being an overly anxious new first time mom. This was my first screw up.. We continued to go about our lives and I didn’t think much more of it. Brindley did have some physical traits as kids with NF1, so I knew there was a possibility she could have it. But there is no cure for it, so I decided that I wasn’t going to worry about it. Plus, in my mind, I wanted my daughter to be “normal” for as long as possible. 

Then the day came. The low blow struggle that still makes me feel sick to my stomach. May 7th, 2019 was the day she broke her leg, and based on her X-rays, her NF1 diagnosis was pretty much confirmed. The day started out normal. We had a great day at the park and had lunch outside. I remember saying to my wife, “This has been the best day.” Later that night my wife slipped on our carpeted stairs while carrying our daughter. What would be a small fall that probably would not cause any damage to other kids, ended up causing a fracture in both bones of her left leg . Of course my daughter cried, but she seemed inconsolable and her reaction was more significant than the mechanism of injury. Also, remember she was barely over a year old and really couldn’t communicate what was going on. 

I thought she was still just scared from the fall but my wife had the mother’s intuition that something was wrong, besides the fact that she was an ER nurse at a busy trauma center. We went to the ER and after some x-rays we were told that she had broken her leg. We also found out both her tibia and fibula were abnormal, and described as congenital pseudarthrosis. Pseudoarthrosis is highly associated with NF1, but only about 5% of kids with  NF1 have this condition. So in short, we were pretty much told that my daughter’s leg will never heal on its own. 

I did not handle the news about Brin very well. I would irrationally cry or yell.  And I felt lost, frustrated, and genuinely feared for my daughter’s future. The drive home from the hospital that night was one of the longest drives of my life.

Handling the Low Blow Struggle:

I remember that night after we got home, I called my family to give them updates on how Brin was doing. During one of the calls a family member said “God has a plan and I will pray for you all.” My response was not great and I am not proud of how I handled it. I said back “Please never mention God again. If he can do this to an innocent child then I don’t want anything to do with him and you can save your prayers.” 

Not a great response at all and this is where I turned my back on God. The only time I would talk to Him is let Him know how pissed I was and how I would never come back to Him. Gradually throughout the months I would grow distant to everyone. I mostly stayed at home and slipped into a very bad depression. I would drink my feelings away with alcohol and I would get frustrated that we had no answers for my daughter. It was difficult for me to see other kids the same age as Brin, doing things she couldn’t do. I didn’t think it was fair and I questioned, “What did we do to deserve this?”

Needless to say, I did not handle this struggle very well. Looking back I was so angry, but maybe there was something bigger going on that God didn’t want to show me yet. I stayed mad at the world, I didn’t talk to anyone about how I was feeling or acknowledge that I was deeply depressed. I figured everyone has problems so I just need to shut up and deal with them. That’s what society kind of teaches us at a young age. We need to deal with our problems in silence.

Wife Saves the Day:

For the last four years we went to the closest NF Clinic to monitor her condition and routinely saw an orthopedic surgeon. Every year we would get the same answer, “she’s too small and we need to wait until next year to have surgery.” So she wore a leg brace for support and was weight bearing as tolerated. But in June 2022, we got the worst news from her orthopedic surgeon. Because of the severity of the pseudoarthrosis, and low probability of her fracture ever healing (even with surgery) he truly thought that the best treatment would be to amputate her leg. Another low blow with this news. Again I was angry, upset, frustrated, and just pissed off at God for what he has done to my beautiful girl. 

This where my wife and I took different paths, I took the path of accepting this as what we need to do and started doing my research on prosthetics. I was contacting different companies, asking other parents who went through this, and found local nonprofits that help families pay for prosthetics. My wife listened to that mother’s intuition and felt like there had to be another way. At the time, my wife worked night shift and during some down time, started doing research to find someone who specialized in congenital pseudoarthrosis of the tibia or NF1. And the crazy thing is, she found someone! 

I remember her coming home that morning in tears saying, “I think I found a doctor that can do Brin’s surgery.” I couldn’t believe it, I was speechless and just started to cry. The night that Nicole found this doctor, I prayed to God. I asked Him for forgiveness, I said I was sorry for hating Him so much. Then I asked Him for grace and to help my daughter however He saw fit. I needed to get right with God and realize He did not do this to my daughter. He allowed it because it was His plan all along. He knew this would change our family for the better but He could not reveal it until we were ready. 

My wife contacted the Paley Institute in West Palm Beach, Florida and two months later, we met Dr. Paley and Dr. Shannon. They had developed a unique surgical technique that treated congenital pseudoarthrosis with a 100% success rate of the bones re-unionizing without re-fracturing. We traveled back to Florida for surgery and on January 19th my daughter underwent surgery that ultimately fixed her leg. It was an intense surgery with a long recovery, but my daughter is an absolute rockstar and crushed every milestone. And ultimately, I feel as if my wife is the reason why my daughter can walk.

Conclusion:

Looking back at this low blow struggle, I can see that I was not who God wanted me to be. My reaction was not of a strong, well balanced Christian father. My priorities were all messed up and I was not living a life that He wanted me to live. When talking about this with other dads they all say I had a right to feel that way or they don’t blame me for feeling the way that I felt. But to me, I feel that I held onto that anger way longer than I needed to. 

All we can do as dads is to look at the past and learn from it so we can grow to be a better version than before. Don’t get me wrong I am not glad this has happened to my daughter but I am happy with what it taught me. All we look at is the destination and not the journey it will take to get us there. After all this has happened I feel that I am a better version of myself and cannot wait to see what the future has in store for my family and me. Moral of the story is, God is always good. 

Let me know what you think. Have you gone through a low blow struggle that changed you? Follow me on Facebook for updates if you haven’t already! Comment below and if you have a story you want to submit click here to tell me your story. You could be featured in the next blog series Everyday Mindful Dads.