I'm Kristi...A 39 year old, mother to six kiddos.
I have Neurofibromatosis type 1.
I grew up in a family where Neurofibromatosis was curse word. The utter mention of it grew guilt and fear in my parents. Understandably so.
I was officially diagnosed with NF when I was 33 yrs old. I grew up watching my Mom and older brother struggle with the symptoms, but never had any real issues until after my own diagnoses. As a child, knew I was different, but no one knew it was because of NF.
After symptoms began appearing, even I denied that it was in fact NF.... hiding in my fear. It has taken me a long time, to finally accept the diagnoses, and break the cycle of fear and resentment. Instead of just living with NF, I have chosen to THRIVE! Using the fear and turning it into doing something productive and positive!
Three of my children got the 'official' NF diagnosis, after I did.
- Do you regret having children? -- Absolutely NOT. What I regret is not being fully prepared for a life with NF. I cannot control how my parents chose to handle NF, but I CAN control how I choose handle my own NF.
I do wish I had more knowledge BEFORE I chose to become a parent, about what it would mean to have a child with NF...But I cannot change the past. I am overjoyed to be a mother and vow to break the cycle of ignorance. I am educating my own children and building them to be strong in whatever they choose for themselves.
- How did you go SO LONG before being diagnosed with NF? --The simple answer to this is just that my parents did not pursue a diagnosis for me, because according to them, the doctors that treated my brother (who also has NF) also examined me and my other 2 brothers, and told them that we did NOT have it...and they didn't have to worry.
The rest of the answer is simply- ignorance...Both on my part and on the part of the medical community who just didn't recognize the symptoms I had, as being NF. I had FIVE babies, many physicals and countless "checks" before ANY doctor connected the dots. (or bumps in as the case may be) LOL
- What made you want to write a book? --I hoped that if I wrote my stories down in a book, that it would possibly help someone...somewhere. For so long, I have felt so isolated -- And maybe if I told MY story, someone out there would feel less lonely.
- HOW did you write your book and get it published? --It took about a year of actual writing. Getting my stories out of my brain and onto paper was probably the hardest part. My hubby helped and encouraged me throughout this process...(Sometimes he pushed me hard)
Believing my stories were worth telling was a hard one for me. I had a lot of days where I didn't feel like anyone would care.
We self-published the book and do a 'print-on-demand' style.
I have sold books to people world-wide and find it quite humbling when I see my book on the shelves of libraries or medical clinics.
Please feel free to ask any questions below in the comments --
I will answer as honestly and openly as I can.