A mother’s love is far reaching and intense. She has brought life into this world and will do all in her power to nurture, cherish, and love her creation. She is a mother, and also a daughter, and sometimes a spouse, sister, grandmother, and friend. When my mom’s own mother, and eldest son, both received life changing diagnoses, not only were they affected, so was she. I am proud to be the son of such a strong and loving mother, who has done everything in her power to care for me through the entirety of my life, and especially throughout the loss of my sight. She is both a marvelous mother, and wonderful writer, who has embraced vulnerability by putting pen to paper. Thank you for being my mom and writing this powerful piece. Please take the time to read my mom’s blog, What A Difference A Day Makes,” and get a glimpse into her head, heart, and soul.
By Guest Blogger: Marie Reistad
Throughout my life, there have been defining moments of great joy, and other times where I have been brought to my knees. Some of the joys have been the day I got married and the birth of my 3 boys. One defining moment that brought me to my knees was July 3rd, 2014…a day I will never forget. A medical diagnosis would change my son’s life, my mom’s life and my life, as I knew it.
In the spring of 2014 Aaron had told us he was having trouble seeing so we encouraged him to get into an eye doctor, He had always had good vision, and it seemed strange that suddenly he was having issues. After his eye exam, Aaron was told his optic nerve was swollen. After a tapering dose of steroids was unsuccessful in resolving this issue, he was referred to a neurologist who ordered an MRI. In the mean time, I was looking up “swollen optic nerve” online. I discovered many things about it but the ones that scared me the most were a brain tumor or Multiple Sclerosis.
Aaron got a call from the neurologist early on July 3rd and was told he needed to see a Neuro-Ophthalmologist in Philadelphia at the Wills Eye Clinic that day. Miraculously, he was able to fit Aaron into his schedule. The Neuro-Ophthalmologist gave Aaron and his dad a preliminary diagnosis of LHON. Genetic testing would later confirm this diagnosis.
My husband, Scott, and my other two sons, Nathan and Caleb, and I live in Colorado but had planned to spend the 4th of July weekend with Aaron as he was at the University of Delaware for the summer. This turned out to be divine intervention as we were able to be with Aaron when he had his MRI and his appointment in Philadelphia. My husband called as they were leaving the clinic and told me that they were pretty sure Aaron had LHON. At first I was relieved thinking it was something that would be treatable and he would be fine. I was looking LHON up on the internet when Aaron and his dad returned. We all cried. We were the ones who really had to tell Aaron what we were finding out about LHON.
The reality of this all seemed unbelievable and unacceptable. Everything in me wanted to fix this. No matter what he has needed, how far away he has been, or how old he is, I have always wanted to fix things for him. Put a Band-Aid on a cut, kiss it and make it better, encourage and love him as best I can even when he left home. Even though he is a grown man, he is still my child and I am still his mom and that will never change. The feelings of helplessness and inadequacy weighed heavily on my heart…why couldn’t I fix this? He had already lost some of his sight and would continue to lose more. I was frightened for him and frustrated that I couldn’t do anything to make this better.
The more I found about LHON, the more questions I had as I found out it is passed from the mother’s side of the family. No one on my mom’s side of the family had heard of this and no one had any recollection of anybody with vision problems or blindness like this.
I felt guilty as this had come from my side of the family and blamed myself for it. Even though rationally, there is nothing I could have known to prevent this. I wondered about Aaron’s younger brothers; would they be affected as well? The fear was confusing and disheartening. My other two sons have been amazingly supportive through this.
On July 3rd, 2014, my mom and my 3 siblings sat in a doctor’s office in Seattle. On the other side of the country in another doctor’s office came another diagnosis; Stage IV gall-bladder cancer. My Mom’s diagnosis was grim and Aaron’s, though not life threatening, was life changing. My mom was more upset about Aaron’s diagnosis than her own, even though she was told she had less than a year to live.
How was this possible? On the same day, 2 family members would receive news like this. Between Washington, DC and Washington State, many tears were shed as my family was rocked like never before.
Aaron decided to continue with our trip to DC and we had an amazing time. We went to the parade on the 4th, attended the fireworks on the National Mall, toured many monuments and museums, and even did a Segway tour of DC. We put Aaron back on the bus to Delaware as we flew back to Colorado the next day with so many emotions and questions. He was off to continue to live his life while losing his sight and that was very frightening.
Aaron was due to start his second year of his Master’s program at Florida State University just a month after the LHON diagnosis. Would he continue or drop out and move home? This was all pretty overwhelming to all of our family.
In true “Aaron fashion” he decided to finish his program. It was very hard for me having him so far away. I was disappointed that I could not be there more or have him closer to assist with all the transitions he was going through. He was adjusting to all the adaptive equipment and would email us his reading and we would spend hours on the phone reading articles to him He would listen and then pause and want something read again and we would pause so he could type his papers. That was a huge learning curve for all of us.
I had been to Tallahassee before and met his roommates and friends but now they were the ones having to help him and support him instead of me. They were his eyes. not me. They were acquaintances and I was forced to trust in these people I barely knew. I was filled with many times of anxiousness as his whole life was changing and I was powerless to do anything about it.
That first year was definitely rough as he was losing his sight and finishing his Master’s program. There were many times I felt helpless and useless to Aaron. I am not the most technically savvy person but would spend lots of time with him on the phone helping him with homework and any other thing I could do. During all of this, you see people in casual situations at work or church, and they would ask, “How are you?” While they had no idea what was going on with Aaron. I would say, “Ok” or “Fine” sometimes even a “Good” slipped out, but on the inside I felt I was crumbling into pieces. We had a great support system too, our family and friends offered to help with reading to Aaron and many other things; but I wanted to take most of this on as I wanted to be the “Mom” and be anything and everything he needed.
Aaron completed his masters program and was chosen by his classmates to speak at his FSU graduation. His brothers, Grammy, G’pa, G’ma and aunt were able to join us as we celebrated this awesome occasion.
We heard about a genetic study that was going to be occurring at the University of Miami. My Mom just knew that this was going to be the answer for Aaron to get his sight back and she would pray every day for this to happen. Six weeks after our trip to Tallahassee, my mom, Aaron’s Grammy, passed away. Shortly after my mom died, Aaron finally got the call from Miami. Grammy’s, and all the other people’s prayers, were answered. Aaron was a candidate for the study. He received the gene therapy injection into one eye. Although the results of the therapy really did not change his sight, we knew we had explored all current treatment options and are at peace with that.
Aaron now lives in Virginia and has a full-time job. He lives alone and uses public transportation effectively. I am so proud of him and the way he has handled his diagnosis.
He has been an inspiration to our entire family. I will be forever grateful for the assistance of his friends and the staff at Florida State University who helped him with his transition of losing his sight and learning to use adaptive equipment. The support he received was amazing and it made me feel better since I was so far away.
Aaron’s activities have not stopped either. He has run half-marathons, continues to do CrossFit, has done snowboarding and climbed 14er’s (14,000 foot mountains) while he has been back visiting in Colorado. He continually amazes me with the things he does.
I look forward to and enjoy Aaron’s FaceTime ringtone on my phone so that I can be his Mom and assist him to set the oven or washing machine, make sure he has the right color of shirt or pants or even assist in figuring out how to listen to the Denver Broncos games on the radio. These tasks may seem small or irrelevant, but they make me feel like even from far away I can help…and am making a little difference, and that’s what moms do.