Meet Nikki Nelson -Southern Utah Parent Advocate

Hi my name is Nikki Nelson. I currently serve on the Utah Kids board as the Southern Utah Parent Advocate. I have been a resident of Washington County since 1990.  I have been married to my amazing husband, Andrew, for almost 17 years; we have 3 children, all boys. Our oldest will be 15 years old this month and is in the 9th grade.  We also have identical twin boys age 7 and in the first grade.

I am currently a stay at home mom, with a small professional photography business on the side. I have a Bachelors of Science in Business Administration.  I worked in the HR field for 7 years before deciding to stay at home.  During college I served on the Student Executive Council as the Organizations President working with the Clubs on campus organizing and helping clubs complete service projects throughout the community. I also served as a VISTA (Volunteers In Service To America) Volunteer for Dixie State College, once again over service on campus, organizing groups as well as individual service projects for students within the community. This also included teaching a service class once a week that a student could earn one credit from.     

The twins were born 11 weeks before they were due.  They suffered from twin to twin transfusion causing them to come early.  This caused great stress to them being born at only 29 weeks.  One twin had mild problems and has come around to being “typical” today.  The other twin suffered more serious trauma at birth and was also the donor in the twin to twin transfusion.  At about 12 months he was diagnosed with Cerebral Palsy (CP).  He currently uses a wheel chair for all transportation however he does love to play on the ground with his cars.  Slowly he is learning to talk and communicate, but he does understand very well.  He eats regular food and he loves to eat, he LOVES to laugh, play with his brothers, listen to music, go for car rides, shop, ride the bus, swim, and just have a great time.  

Having a child with special needs has introduced me to a whole new world.  It has given me great opportunities to meet amazing people.  It has also given me some of my greatest blessings in life.  It is the hardest thing I have ever done, but truly the most rewarding!  

I know how important a support group is to me.  Sometimes there is a very “alone” feeling being a parent of a special needs child, but a support system is crucial to help dissipate that feeling.  Somehow the word needs to get out there that support systems do exist and that there are so many resources available.  I love volunteering and serving the community. I am so honored to get to be a part of Utah Kids and have the friendships that I have gained from it.

My favorite quote is:

Do not go where the path may lead, go instead where there is no path and leave a trail.

Or this one

God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family. -- Author Unknown

The hardest thing I’ve had to do as a Special Needs Parent is watching my 1 week old baby be taken away in the Life Flight incubator to go to Primary Children’s for life saving bowel surgery. Then again at age 4 months, same thing. Or it could possibly be the skull surgery we chose to do knowing it was risky, but that he needed it to fix the shape of his head for growth in the future. Maybe it’s holding him as he cries while they put him to sleep so he can have injections in his legs so he isn’t so stiff. Then again this last summer when he had to have a right hip reconstruction, femur reduction, and adductor release surgery and then spent 6 weeks in a body cast was all pretty hard too. I guess the theme here for me is that surgeries SUCK and it’s very hard for me to send my little buddy  to be put to sleep so when he wakes up he doesn’t know what’s going on and no matter how hard I try to explain it to him before hand he just doesn’t understand. Yes, these things are hard, but I’m not gonna lie, being a Special Needs parent is also very rewarding  and truly has taught me the greatest gift of all, Unconditional Love, because even though surgeries are hard he still LOVES me when it’s all over.

10 Little Known or Interesting Facts About Me

1. In December 2013 my husband won a Facebook contest to have Lasik surgery for himself or a friend, he gave it to me. Best gift ever!
2. I have a sunflower tattoo on my right leg.
3. I’ve had melanoma cancer on my right arm and had to have a chunk of my arm taken out as well as lymph nodes in my arm pit. Because of that surgery I can’t feel anything on my right arm from just below the elbow all the way to my fingertips.
4. I met my husband on a blind date that we both had cancelled several times before finally caving in and going on it.
5. I’m terrified of Heights. I shake and start to hyperventilate when I’m put in that situation.
6. Every year I set a goal to read 10,000 pages in one year. I did it once in 2010, but barely, 27 books for a total of 10,015 pages.
7. I took a class in college twice because I didn’t get an A. I got a B+ and that wasn’t good enough.
8. If it’s from the sea I DO NOT eat it. I also HATE olives, not that they have anything to do with each other, but I dislike both a lot. But I do LOVE Diet Coke and can be found drinking one from sun up to sun down.
9. My car caught on fire one time when I was driving home from Salt Lake with a friend.
10. When I was younger I wanted to move to New York and work in a high rise.