Meet Missy

Meet Missy 

Missy was featured on the Utah Spina Bifida website. Please click the above link Meet Missy to see it.


Q: Tell us about Missy and your family.

A: Jesse and I were married in 1999. We tried to have a baby for 6 long years. Finally our prayers were answered in August of 2005. We were going to have a baby. That December, through a triple screen blood test and ultrasound we found out that our baby had Spina Bifida. At that point all our thoughts about baby stuff stopped and the focus became primarily on Spina Bifida. Along with our doctors, we decided to do a scheduled C-section two weeks before Missy was due. Within 24 hours Missy birth she had surgery to close her back. Six weeks later she had another surgery to insert a shunt into her head due to Hydrocephalus. Since then, Missy has undergone three separate surgeries, first to remove her adenoids and place tubes in her ears, the other to try and fix the valves (ureters) that are letting fluid back to the kidneys. The second surgery mentioned to repair the valve (ureters replantation) was only partially successful. This last year Missy went under a battery of tests and medications we found little choice but to proceed with a bladder augmentation this past June. So far, so good.
 Q: What is the most difficult challenge you have had to face so far in dealing with spina bifida?
A: The unknown is certainly the most challenging aspect of Missy’s condition. There are as many variables in the effects of Spina Bifita as there are diagnoses. We are learning now to roll with the punches and take them as they come. We understand that a strait answers are rare in her case. Honestly the MOST difficult challenge to us is to hand our baby over to the anesthesiologist before surgery.
Q: What has your experience been with daycare? (I think a lot of families would be interested to hear your positive experience)
A: We put Missy in the West Jordan Child Center at 3 months old. We believe that Missy has benefited from this good, group day care, where she can have fun and learn how to interact with others. It is an excellent daycare with fantastic teachers. They have always been willing to help with anything we have needed. The first year they would call me anytime they had a question about something going on with Missy, even little things, which made me feel more comfortable. As she got older and they were more familiar with Missy and her needs the calls lessened. I only get phone calls now if she is actually sick. They even got involved in her Physical Therapy. Even though we would tell the teachers what we were working on at home, we would have our early intervention therapist come in as well to show them how they could work with her in their environment. When we started cathing her, the daycare even offered to do that as well but I just didn’t feel comfortable with it. Actually, I am the only one who does it. It was a nice gesture though.
Currently at daycare, Missy is involved in creative work, imaginative play, and physical activity. She has space to move indoors and outdoors in her wheelchair. She is drawing, coloring, pasting, cutting, counting, knows her ABC’s, can spell and write her name, she is learning about the seasons, months and days of the year and she is only 4 years old.
I think the best thing about daycare is the socialization Missy has gained. Because she has been there since she was so little, she has grown up with all the kids. They don’t see that she is disabled. They just see her as their friend Missy. She has been invited to numerous birthday parties, play dates and even went on her first field trip to the Hogle Zoo with her classmates. When Missy had her last surgery she had one friend visit her in the hospital and another when she got home. She even has a little boyfriend at daycare (they think they are going to marry some day). It really makes it all worth it to know she is loved and has many, many friends.
Q: Tell us about Missy’s tennis lessons.  How do you feel about getting her involved in a sport
A: Since both my husband and I learned so much from sports as children, we thought it was very important to give Missy the same opportunity. Self-esteem isn’t something you can give your child. We gain positive self-esteem through accomplishments. We believe that Missy can achieve these accomplishments through sports by reaching goals, big and small, and feeling good about herself. Sports provide a positive learning experience that will enhance her ability to build skills, endurance, strength, self-confidence, good sportsmanship and teamwork skills. Sports will also teach her to work hard and have a fun too. Perhaps some of the greatest life lessons are learned in sports. Winning does not come easy; you’ve got to work for it. “Winners never quit and quitters never win.” Life isn’t fair. Sometimes you give it your all and you still lose. When you lose, pick yourself up and try, try and try again.
We decided to put Missy into Wheelchair Tennis this past spring. Neither of us had ever played tennis but we chose it because we could all play it together. At first she was the only little girl out on the court. Most of the players were adults or teenagers. Missy could care less though. She loves being on the tennis court playing with others in wheelchairs just like her. Later in the season, another two kids started to play tennis, which made Missy look forward even more to tennis. Now the three of them are playing basketball together too. It has only been a couple weeks but I think Missy likes basketball even more than tennis. Maybe it’s because there is a lot more kids on the court or maybe it’s because she is actually better at it. Who knows? All we know is that she looks forward to playing every week.