Hello, my name is Nola Bowering, my husband is John, our sons are Jackson, Hudson and Oliver. We live in Winnipeg, MB. I am a teacher at the Manitoba School for the Deaf and my husband works at Manitoba Public Insurance. I have NF1 and our son Jackson, who was born on December 4th, 2005, has NF1 as well. This is our story.
I was diagnosed very early as having NF1. My mom and her twin sister have NF1 and my grandma, who passed away when I was very young, had NF1. As a person growing up with NF1, I always had many questions, not as many when I was younger. I find the older I get the more questions I have. It wasn’t until I was probably in university that I started doing my own research on NF1 and trying to find answers to the questions I had.
As a person living with NF1, I think the most frustrating thing was finding a support network…finding others like me who understand the feelings I have and the same concerns I have. Of course it’s quite easy to talk to my husband, family and friends, but you feel a certain closeness when you meet other who are “just like you”. I am trying to be braver and be open about my NF1, when others ask about the fibroids on my skin, I try to make them more aware and let them know what NF is and what it is all about.
I think the day I got married was one of the happiest days of my life. Finding someone who loves me as I am and accepts me unconditionally is the best feeling in the world. My husband is very supportive of me when it comes to NF and is always willing to learn more and help me when I have down days. There are days when I ask the question why me, but then I think, this is how God made me and he has a purpose for me. I try to look at the bright side of life and remain very positive, some days are better than others but I have been very blessed with the life I have had so far.
I think the 2nd best day of my life was December 4th, 2005, when after 38 hours of labour and no epidural, our son Jackson Richard came into our lives. I think he is the most beautiful baby and I love him so much. Jackson has NF1 and the feelings of guilt I have are unexplainable, but I am dealing with this as best I can. Some days I just cry, but I pray a lot and I know the best plan will work out for Jackson. I know John and I will be excellent advocates for him and will teach him all he needs to know about NF.
Awhile back I was just searching on the internet and I came upon Tracy Gregorash’s article in the Brandon newspaper about her NF walk. I immediately gave her a call and we ended up meeting in Winnipeg along with another family. I think this is absolutely fantastic, to have a support group where we can get together and just chat or share any concerns, or updates of doctor’s appointments. To have this support system is great. It is amazing that I came upon Tracy’s name on the internet and we connected so quickly. I think it is very important for people to be aware of NF and how common it is. I think the more that people spread the word, the more people that may come forward and tell their story as well and be a part of a group where we can all share our experiences and connect with one another.