Kelly & Ryan “Chapter Two: Don’t Miss The Magic”

Summer 2018

Summer 2018

Written by Ryan’s mom, Kelly

Thinking about Ryan’s update from last year and it seems so much is status quo. For the most part, things are steady…he is growing into a true teenage boy: facial hair, deep voice, and an appetite that doesn’t stop to prove so. A few minor medical issues that rear their head every so often, bumps through the school year, bumps at home, but for the most part he - and we - are steady. Looking back though there was a definite high point for Ryan & our family that I think has stuck with us and changed us a little more for the better.

It amazes me as I reflect on things how one event can carry us through that whole cycle of emotions. As we planned our summer vacation for 2018 we were filled with excitement about our first trip to the beach - a house on the water with twenty plus of our loved ones! Waking to the smell of the ocean water, the sound of the waves each morning. Eating dinner with our extended family each night, taking in the sights and sounds of a brand new place. Sometimes though, within seconds we found ourselves in grief, thinking about the “what ifs” like….what if  Ryan was a typical sixteen year old? How much fun this would be? What if If he was able to take care of himself more like the other two; what a relaxing trip this could be. Really, the what ifs are endless and they never get us to a good spot. Usually, the sad what ifs are just an extension from the worries we face over something that should be fun, like planning a vacation. We find we worry about the long drive and hope that he will not get sick again, we worry about the hotel stay and hope he will sleep, we worry about the change in climate and environment and hope his sensory system will love the ocean. We were confident he would love the water, but the sand? Definite worries about how that would go down. Followed by hope that he would love it all.   

Ryan is a pretty smart kid. Actually he is incredibly smart and intuitive about people. He reads emotion and stress levels pretty accurately; if I am ramped up, he gets ramped up. So, for the days leading up to the trip, we try to keep things relatively calm. We hide all of the bags and bring them out late at night and line the hallway. When we wake early in the morning, my husband Aaron loads the car before Ryan wakes up, so he isn’t in a panic (if he sees the bags he will insist he sit in the car until we leave town - refusing to dress, eat, etc for fear we will not take him with us). So, day of the trip we managed to load and hit the road relatively simply. The first night in the hotel was met with anxiety of eating dinner in a public place full of families. That can be overwhelming for Ryan so we found a spot in the back, away from the hustle and bustle of everyone. We had family with us helping and I remember we had to start taking turns walking him out of the room to calm him down. This quickly became a bit of an issue for Ryan and as usual, we were stressed and it showed which makes things worse for all of us. As the dining room emptied, the gentleman on duty cleaning came by and checked on us multiple times, insisting that we not rush and offering to help in any way. I remember he was so calm and clearly not bothered by the mess or noise we were making and I was grateful for him. The night moved on and sleep was difficult for Ryan, but not bad enough to go to the parking lot and sleep which we have done in the past trying to not wake the entire hotel. We enjoyed the rest of the drive to the beach with a couple of scenic detours on the way and Ryan, like usual, loved the actual drive.

Photo by    Randy Bacon    - November 2017

Photo by Randy Bacon - November 2017

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When we arrived to the house and unloaded, part of our family went directly to the water. We helped Ryan check out the entire house and watch us unload the bags so he knew we were staying and he was safe. Pretty quickly after we arrived, the magic began to unfold. That cycle of excitement, grief, hope and worry, still showed itself, but it was startling how short the grief and worry were and how long the pieces of excitement and hope stayed. We were surrounded by our village of people which made a huge impact… because it was also Ryan’s village. We were in a house with twenty people that loved us and loved him deeply. Everyone was rooting for us that week. Everyone saw up close how hard even the small things could be and all of our family stepped in to be a help. From taking turns feeding him, taking him for a car ride, helping schlep everything down to the beach, keeping an umbrella over him, bringing snacks… there were a lot of extra hands. I could not guarantee this, but I am confident we were covered in prayer by the whole houseful of people daily. Not to mention the love. It was abundant everywhere.

What I found even more impactful was that our village grew. We met the people on the beach that parked themselves near us everyday and everyone wanted to know about Ryan. Our normal day was that our parents took Ryan for a ride in the morning so we could eat, dress and hit the beach for a bit. When they arrived back, we dressed Ryan for the beach and headed down. Ryan lounged for a while everyday in his chair under the umbrellas (we found a way to keep the sand out of his reach and off of him - it was not a good mix!). Before long, we put on his life jacket and headed out to the waves. He laughed and smiled and soaked it all in. He loved the feeling of the waves rolling in against him and he wanted to simply stay out and bob….all afternoon! For hours! He was incredibly happy and the people around us on the beach turned into his biggest fans. A dad wearing an Alabama hat called Ryan, “Bubba,” everyday and asked him how he was liking the beach. Another family waded out into the water to visit with us; they have a son with significant special needs that they can no longer care for in their own home. He was unable to join them at the beach, and his mom, dad, and sisters missed him. The dad in fact, stood out with us for what seemed like hours and held Ryan in the water and talked to him. It was very clear that Ryan was helping this dad with his own grief. The entire week continued in this way. Magic unfolding each day in the water and the joy on his face clear for the world to see. The worries and grief faded away and were replaced with gratefulness and hope that the night and the next day would be just as amazing.

In the midst of the normal daily grind it is easy to miss the magic. It is so easy, (especially for me) to find myself consumed by the sad, the worry and the grief… the “what ifs”. This vacation though, showed me that when we simply pay attention, there is magic happening all around us. The people surrounding us are rooting for us even when think we are too busy to see us, they are covering us in prayer and love… and not just our family. I think that is what really changed me. The love others, complete strangers, showed for us. It is hard to write for Ryan, as everything I say is really my story and my perceptions. However, I am confident if Ryan were to tell us what the highlight of the past year has been, it would be this trip to the beach. The joy is clearly written on his face.

December 2018

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

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.

Roberts Family

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.

Roberts Family

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.

Roberts Family

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.

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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.  

Roberts Family

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.