Pushing through the pain to lead full lives
For the Blazzard family, pain has been ingrained in their lives since the very first days of their daughters’ lives.
“We are just grateful there is life to be had,” say Michelle and Barry Blazzard of the lives they lead with their daughters, Ryane, age 16, and Robbi, age 13. Ryane and Robbi both echo similar sentiments, saying, “Sometimes you just have to be positive, and being able to talk to each other reminds us we are never alone.”
When Michelle was four months pregnant with her first child, she was told Ryane had spina bifida, a condition where a portion of neural tube fails to develop or close properly, causing defects in the spinal cords and spinal nerve. Michelle feared for her child; she spent her nights researching, spending hours at libraries, and looking for treatment centers and pediatric surgeons in their area to no avail. She would often wake up in a panic, and admits she still wakes up in a panic when the girls are struggling with their health.
When Ryane was born, she immediately had surgery to close the opening at the bottom of her spine caused by spina bifida. Several weeks later, Ryane was diagnosed with hydrocephalus (a buildup of excess cerebrospinal fluid on the brain) requiring the placement of a ventriculoperitoneal (VP) shunt to drain the fluid. Ryane was also born with a neurogenic bladder and bowels, which didn’t allow her control of her bladder or bowels; she has required continuous catherization from birth.
Michelle quit her job to take care of Ryane, causing financial hardship for the family. Barry’s salary put them just over the limit of what would qualify them for Supplemental Security Income (SSI). At the time, they just wanted to live their lives as normally as possible, but it was a struggle because family members and friends had trouble understanding and didn’t have the knowledge necessary to help. As Michelle recalls, “My husband and I were exhausted all the time.”
Three years later, Michelle became pregnant with Robbi, who was also diagnosed with spina bifida in utero. Michelle recalls, “I panicked. I didn’t know if I could do it with two children—but we just pushed through.” Robbi was born and immediately had surgery to close the opening at the bottom of her spine. Much like Ryane, Robbi was diagnosed with hydrocephalus and had her first VP shunt placed weeks after her birth, along with the use of catheters to treat her neurogenic bladder and bowels.
After Robbi’s birth, Michelle’s sister moved from California to live with the family and help care for both of the girls. “You have to have a different mindset” to care for children with such intimate and unfamiliar illnesses and treatment of them, Michelle reflects. She knows her sister’s help was instrumental in caring for the girls early on.
Pushing through the pain
The Blazzards recall that it was difficult to know when their daughters were in pain when they could not yet speak or understand their circumstances. Both girls got lethargic and tired, unable to communicate their symptoms. But Robbi would cry and eventually throw up, which is how they knew she was in pain. It is much easier now because they are able to communicate and understand where their pain is coming from, but that doesn’t make it easier to treat.
“We have tried countless treatments for pain and both girls use heating pads, ice, rest, relaxation techniques, and stretching,” says Michelle. Ryane is able to take ibuprofen; however due to the fact that Robbi is in kidney failure, she cannot. Daily pain management is a struggle for both girls, despite the family’s efforts to try a multitude of different complementary and alternative medicines.
Now at age 16, Ryane has gone through 14 surgeries, including VP shunt revisions, two surgeries to fix her tethered cord, and an antegrade continent enema (ACE procedure) that allows her to empty her bowels every night. With the help of Shriner’s Hospital Los Angeles, Ryane has worn fitted ankle-foot orthosis (AFOs) since she was able to stand, the only visible appearance of her conditions.
Now 13, Robbi has had 18 surgeries, including several shunt revisions, two surgeries to fix her tethered cord, and an ACE procedure (which eventually failed, requiring the placement of a ‘Mickey button’ to empty her bowels every night). Robbi is also hooked to a Foley catheter every night for urinary incontinence.
Both girls experience pain during their nightly bowel cleanouts, and miss out on a number of things because of them. It takes almost two hours to complete their cleanouts, so they try to do them around plans they have made with their friends… but sometimes they have to cancel. Robbi is also unable to make sleepovers because she sleeps with a Foley catheter each night.
Both girls acknowledge their frustration and sadness over the pain and the circumstances they experience at times, due to their medical needs that other kids their age don’t have to deal with. However, they say they are able to speak to their closest friends about it and that they are as understanding of circumstances as they can be.
Living despite the pain
Both Ryane and Robbi have had individualized educational plans (IEP) set in place from a young age to allow them to attend school regularly and as often as their health allows. Their IEPs differ slightly; however both are provided with unlimited sick days, permission to leave class every three hours to use the restroom for their catheterizations, extra time for tests and to get to classes, and the use of calculators on math tests.
Although their IEPs help the girls, both admit that some days are more difficult than others. But they both enjoy school and being with their friends.
Ryane, now a junior in high school, describes herself as your typical high school girl. She loves hanging out with her friends, watching movies, and listening to music. She describes herself as an “artsy kind of girl,” loves English class, and just got into journalism class. She loves drawing and painting, especially nature and objects, and admits her health has limited her in some ways but says she has to do it for her health and doesn’t have a choice even though it does make her sad.
Robbi, now in eighth grade, says she really likes a lot of subjects at school, especially math, and helping out with special needs children. Robbi acknowledges that when her pain is really bad it is hard to focus, especially on subjects like math, where her complete attention is required. Robbi likes to swim, play soccer, watch movies, hang out with friends, and anything that has to do with sports. When she does have to cancel plans due to pain, it makes her frustrated and disappointed because she is often looking forward to those activities.
Ryane and Robbi Blazzard are living their best lives despite their pain. They have been taught from an early age that they had a normal life and have lived in that mindset. The girls have hard times and get angry at their circumstances from time to time, but know that “it’s going to be OK, and sometimes you just have push yourself.” As Michelle and Barry say, “It’s a way of life and we just need to stay positive!”