“This little girl, who cannot do anything to care for herself, is so filled with love that no matter how much she needs; she still gives far more than she takes. She is a beacon of light. She has taught us to believe in possibilities. She has taught us what it truly means to give of yourself. She has taught us that we create the world we live in. We can choose to be happy in spite of unimaginable odds. Life is a gift and no one I know has celebrated that gift as beautifully as Krissy does.”
Krissy was born via C-section on March 25, 2000 at Tacoma General Hospital in Tacoma, WA. She weighed 3lb 10oz. After spending several hours getting to know her family she was taken to the Intermediate Care nursery for monitoring and evaluation. They weren’t really sure what to do because they were expecting her to die and this tiny child was all about life and living! They placed an NG tube to make certain she was getting enough to eat but aside from that and being very tiny she was not really different from any other newborn. They kept her in the nursery for a couple days and then she was moved into the room with Mom. At five days old she went home. There was nothing she needed that we couldn’t do at home and we knew that at home she would be surrounded by the love and energy of people who believed in Krissy and in her possibilities!
The first year was tough as we learned to be parents to our beautiful girl with special needs. At age 3 months Krissy received a trach due to obstructive apnea. A tough decision at the time but as time passed it became no big deal. At age six months we had a g-tube placed. We were tired of looking at the ng tube and realized that feeding support was going to be a long term need.
Once we had a safe airway and Krissy could get the rest she needed as well as adequate nutrition without having to use all her energy to eat, she began to grow and develop. She was tiny for sure but her growth was steady, just below the typical “growth curve.”
Krissy began school at age 3 and attended the schools in our home neighborhood. She had 4 brothers who loved and adored her. And life with a special needs child became our “new normal.”
As far as medical issues go we have been blessed that Krissy has not faced many. At about age seven it was discovered that she had a diaphragmatic hernia which was successfully repaired. We had a big medical scare in mid-December of 2011. Krissy developed an abdominal obstruction that landed her in the hospital and required emergency surgery. It was a long and winding recovery which meant that we spent Christmas and New Year’s in the hospital. But recover she did and we returned home in early January.
When Krissy was 15 she had rods placed due to her severe scoliosis. She grew 4 inches that day! This created another new normal for us but it was needed and, in true Krissy fashioned, she adjusted.
The most ongoing issue we have faced has been with Krissy’s eyes. When Krissy was just a couple years old we started noticing a cloudy look to her corneas. She was developing calluses due to not fully closing her eyes at night not and blinking often during the day. In spite of all of our precautions Krissy has required several eye surgeries to attempt to give her the best vision possible. She first had a tarsorrhaphy performed (where they stitch the eye partially closed) to reduce the surface area and exposure to the eye. They also placed “gold weights” in her lids to try to assist with closure. (Hey, you’ve got to keep your gold someplace, right?) She has had a corneal transplant in both eyes, one of which failed. And a cataract surgery in one eye. We look forward to the possibility of an artificial cornea to see if we can improve her vision. We do lots of drops and ointment to try to keep her eyes moist and hydrated.
Her eyes were big and bright and beautiful with incredibly long eye lashes. They are still beautiful but not the same. We are blessed in that Krissy’s eye are the only constant medical issue we deal with. Still, her vision is so limited and I’d love for her to have better vision back.
Krissy has always loved school and attended our local high school. During high school she has participated in Special Olympics Bowling – an activity she loves – and participated in cheer. She attended her Senior Prom with a date. It was a wonderful day. She graduated at age 18 and walked the stage using her Kidwalk gait trainer to receive her diploma.
Krissy is a social creature and loves being in the midst of crazy and chaos – that’s what happens when you grow up with 4 wonderful, active and loving brothers. I’m not sure how she’ll handle life after school but that time will be here soon.
From the beginning Krissy has been the greatest teacher I’ve ever had. This little girl who cannot do anything to care for herself is so filled with love that no matter how much she needs; she still gives far more than she takes. She is a beacon of light. She has taught us to believe in possibilities. She has taught us what it truly means to give of yourself. She has taught us that we create the world we live in. We can choose to be happy in spite of unimaginable odds. Life is a gift and no one I know has celebrated that gift as beautifully as Krissy does.
Today that little girl is a young lady. Kristina is 21 years old. Krissy may not be your typical young adult but she continues to teach and lead and share incredible love and happiness. Because of her, we have friends around the world. She blesses our family in ways we could never have imagined. I know I am a better person because Krissy is in my life.
Krissy is our light, our love and our Hero.
Written by: Terre Krotzer, Krissy’s mom