Our sixth child was about to be born, and we were so excited to welcome him into our family. We were ready, and I had planned a beautiful birth. Things went fine until the very end when his head came out. Suddenly there was panic, and he was pulled out of me quickly. His cord had ruptured during his birth, and he was not responsive. VEDS was not on our radar at the time, but this would later be the first clue that our youngest child, August, has vEDS. We found out the day after his birth that his right arm was not moving at all. When he was so forcefully pulled out at his birth, the nerves in his neck that control his arm were torn and/or stretched. His right arm was completely paralyzed. He has what is called a global Brachial Plexus Injury.
The doctors originally told us that his arm would heal on its own, but thanks to my mother’s intuition and training as an Occupational Therapy Assistant, I knew we needed to find a specialist. There are no doctors in Utah who are skilled at dealing with brachial plexus injuries like August’s. After some research, we found Doctor Kozin in Philadelphia, and decided he was the one who we would go to. He is the best of the best when it comes to brachial plexus injuries. Doctor Kozin had us send him a video of August’s movement, and from that short video alone, he knew August needed surgery. He told us to schedule a date and come to Philadelphia for the surgery. This surgery was to last all day long, and no imaging would tell us the degree of damage to the nerves. We just had to trust that Dr. Kozin knew what he was seeing from August’s videos. That is some kind of faith, especially in a doctor we had never met!
This was a very difficult time for me personally. The experience of August’s birth was very traumatic, and I had a lot of work to do to get past the trauma. On top of that I was dealing with feelings of intense grief, guilt, and anxiety. The thought of my baby having major surgery was terrifying to say the least. I was so distraught, and I prayed that it wouldn’t have to happen. That somehow we would get a miracle and he would be healed.
When August was 4 months old, we flew from Utah to Philadelphia for the surgery. I was so nervous for that day. How could I be calm all day while my baby was intubated and undergoing surgery? How could everything be okay? I didn’t sleep at all the night before the surgery. Early the next morning, exactly two years ago tomorrow, we took August to the hospital for surgery. The anesthesiologist took August to the Operating Room, and all I felt was peace. I had been so wound up that I didn’t know I was capable of feeling peace in this moment. This was a miracle in and of itself, and I marveled at it.
During surgery, Dr. Kozin found that the two nerves that control August’s shoulder and elbow were completely torn. The three nerves that control his hand and wrist were pulled like taffy and were a big bundle of scar tissue. Dr. Kozin took nerves out of the backs of August’s calves, and grafted them into the two torn nerves. He decided to leave the other 3 alone since we had started to see some movement in his hand and wrist. All went well during the surgery, and Dr. Kozin felt confident that we would start to see some movement in the next 6-12 months.
August is 2 now. He has had two surgeries so far, and he is doing great. He has handled all of the hard things in his life with a smile on his face and determination to get past it. He has never let his arm slow him down. He now can move his shoulder and elbow quite well, and his hand and wrist work ok. His arm is quite limited, but it is so much better than what it could be. I am so grateful for that surgery. It is amazing how much progress August has made and continues to make. It is a miracle.
Looking back over the past couple years, I have had many experiences where I felt peace and calm in the most stormy, heartbreaking times. Even though August’s birth was extremely traumatic, I also felt immense peace and a certainty that everything would be okay. The day Greg was ambulanced from Zion to St. George (the day that changed our lives) was scary, but I also felt such peace and strength. The day we told our children they have vEDS was heartbreaking, but it was also beautiful, and I felt so much peace and love surrounding us. I have no doubt that I’m not alone. I have a loving Heavenly Father who is always there. His grace is amazing. I know that I have angels surrounding me, especially during the hardest times. There are also earthly angels, whose thoughts, prayers, and acts of service and kindness have strengthened me during the hard times.
For me, the times I have the hardest time feeling peace are when things are feeling more calm and nothing big is going on. When I’m trying to process all the things happening in my life. I have had many moments that weren’t filled with peace. I have felt alone and like no one cares and no one understands. I have searched for ways to feel peace so I can continue living the life I want to live.
The best and only place I have ever found true peace is through Christ. He cares, and He understands. He is very possibly the only one who truly understands what I’m going through and how I feel. He said, “Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.” (John 14:27). He is the Prince of Peace. If I can be connected to myself and to God, it is so much easier to feel the peace I need to feel. Remembering how peaceful I have felt during the extremely hard times helps too. I know I am not alone.
I can’t say I’m grateful for what happened to August at his birth, but I can say that I am grateful for the things I have learned through my experiences being his mother. He has taught me about peace and calm in the storm better than anyone else. He is one of my greatest teachers.
