Ryan's story "Life is tough, Ryan is tougher"

Photography by Randy Bacon

There is just so much...fifteen years and there is still so much. So much love, so much grief, so much excitement, so much worry, so much effort in persevering day to day. So much for our son Ryan and for us - those who love him and who champion him.

It began with excitement. Naive excitement to be precise. He was our first born child, our first pregnancy. The pregnancy was unremarkable, until the day it became extraordinary. I was thirty-two weeks pregnant and my husband, Aaron, and I had just moved home to Kansas City to be near our families. I was checking in with my new doctor to follow up on a sonogram from the Friday before in which there was a “hmmm” moment from our doctor - but no major concern. We were so naive. As soon as the sonogram began, the technician started asking questions, “When was the last time the baby moved? When did you eat last? Are you sure you are thirty-two weeks along? Are you sure your water didn’t break?” These questions quickly led to a perinatologist racing in and explaining that I had only a small amount of amniotic fluid left and that Ryan was curled up trying to find refuge. Grief, hope, worry...they all set in as I was rushed to be admitted and monitored. The hope, then, was that I could stay on bed-rest and as long as possible. But at 8pm that night I was taken into surgery so that Ryan could be born. That little pocket of fluid was all that was protecting him as I had begun having contractions and with each one, his heart rate plummeted. Shortly after 8pm, we became parents our first born son. Excitement again.  

 Ryan Christopher Roberts was born with this amazing head of hair. It was perfectly coiffed… I have never seen anything like it again. Our beautiful, tiny, 3 pound 10 ounce little boy was here. Aaron was able to see and touch Ryan before he was rushed to the NICU. Aaron came to me, with watery eyes and said there was something wrong with Ryan’s right eye. He didn’t know what, but it didn’t look right. Naively, I assured him it was all fine..probably just that waxy gunk babies are covered in. As I was later wheeled through the NICU so I could see Ryan, faces of different doctors were popping into view, telling me Ryan had a diagnosis - Peter’s Anomaly; he was blind in one eye. His cornea hadn’t developed correctly, and a specialist would be in to see us tomorrow. Grief. The cycle had begun.

Truly, Ryan was among the healthiest babies in the NICU. He was only blind in one eye, so we thought. A couple of days later he couldn’t maintain his blood sugars, then he had difficulty having bowel movements, then he was being scanned for spina bifida (negative), then he was found to have a kidney disorder, then he failed his hearing tests. There always seemed to be a next thing that didn’t go “right”. But even with all of those things, he was still among the healthy in that room. With the least amount of tubes, IVs and monitors, we took heart in knowing our baby would come home with us some time.

After thirty-three days, Ryan came home. The next year was filled with therapies, appointments, sick days from work, and countless nights without sleep. We were so fortunate that we had ended up living with Aaron’s parents. It took all four of us to care for Ryan around the clock, plus others on call to help at a moment’s notice. There were always meds to be charted, vomit to be cleaned, towels & blankets to be washed, seizures to be timed, or breathing treatments to be given. That healthy baby from the NICU had become very, very ill. After a cornea transplant at five months old, Ryan was simply unable to fight off germs. Someone sneezing from across the doctor’s office turned into a major respiratory event for Ryan. He was in and out of the hospital with RSV, bronchitis and pneumonia. He was also no longer able to keep food down on a regular basis. He was diagnosed with “failure to thrive” and later had a feeding tube placed in his stomach for almost a year. He was sleeping sitting up so he could breathe and so that he would not throw up. Along with being deaf-blind and having significant developmental delays, he began having seizures. We were lost and tired and broken. As we grieved, we had amazing family and coworkers that literally carried us. Food was cooked, gift cards were given, gas tanks were filled, diapers were purchased, lesson plans were written. We were living proof that it takes a village.

As Ryan turned one, we had an appointment with our geneticist. It was during this appointment that we reviewed the long list of concerns that had shown themselves through his first year. This list, along with other things we thought were just cute; a “cupid’s bow lip,” or the “McKernan family ear” were not just those cute things…they were markers for a very rare syndrome. His diagnosis changed to Peter’s Plus Syndrome; a syndrome that, at the time, had less than 50 known cases in the world. A syndrome with a twenty-five percent chance of recurrence with every future pregnancy. We celebrated his first birthday by inviting practically everyone we knew to a party. We simply had to celebrate that he made it - that we all made it.

 By the time Ryan was three, we seemed to have a better handle on his medical needs. His meds were working, he was making gains in therapy, and things had settled down. We had found doctors that could offer us hope instead of doom and we clung to them. We decided to take our chances with another pregnancy and prayed that we would have a healthy baby. Our son Wyatt was born with no concerns. Wyatt’s typical development seemed to spur Ryan on; he was moving more, trying to keep up with Wyatt. They developed a bond that was nothing short of amazing. They sat and played side by side, trading toys and following each other around. We were simply in awe and knew that Wyatt had been the best thing that had ever happened to Ryan. When Wyatt turned one, we decided to add to our family again. The following July, their little sister, Dylan was born, also with no concerns. Our little family was complete and those babies brought more life and love to our family. Ryan adored them both and we quickly realized that while Ryan had all of these cognitive delays and medical needs, his ability to love and be a big brother was fully intact. Ryan played with both siblings and his personality began to come out loud and clear as he taunted them and giggled. Taking a toy, pulling hair, stealing their candy and doing it all with a smile on his face while they watched him, dumbfounded that their big brother would do such a thing. These relationships helped us realize that Ryan was in so many ways, just like them. And that was important.

Today, Ryan is fifteen years old. The cycle continues for our family… excitement, grief, hope, worry. Ryan received an award at school a few months ago for perseverance. There was so much excitement because he really has persevered his entire life! He is alive after a dangerous start. He can walk (he didn’t until he was 3 and has now had two major knee surgeries), he can communicate - non verbally - but this kid can tell you when he wants macaroni & cheese or he is sick of being at a baseball tournament. The moments of grief are shorter and farther apart… a quick pang comes at times like watching his classmates all dressed up with dates for their first homecoming dance, or trying to plan a family vacation and wishing it were easier. Ryan has relationships with people he really likes. He has a future that does not exist in a drab old institution (as predicted by a previous neurologist) and that gives us a little worry, but a lot of hope! This hope is thanks to the most incredible people that we have been connected to that have become Ryan’s OWN village. His amazing and loving teachers, para-educators, doctors, nurses, therapists, advocates and classmates help us see and remember all that is truly possible for him.  

There has definitely been a learning curve and it hasn’t been smooth. Trying to navigate school, public outings, stares, whispers, educating people when you really just want to pretend everything is normal, can be tiring. While Ryan has persevered constant obstacles, he has helped teach us to persevere as well. So, we do. Life is tough, Ryan is tougher.