By Ashley Palenka
My name is Ashley, and I am a special needs mama. As I reflect back on my journey with Ryland wondering what to write about, it comes to me, and I smile inside. A mother is a child’s biggest advocate and manager.
When Ryland was 4 months old our doctor advised us to introduce rice cereal. We gave Ryland rice cereal around 6 pm, after taking advice from many of my experienced mom friends who said “it will fill their bellies up and they will sleep longer, trust me.”. Come about 10pm, we went running to the bassinet to find Ryland throwing up, aggressively. The throwing up didn’t stop. He continued until the bile in his tummy was gone and he began to fall limp. We called his pediatrician who advised us giving him pedialyte in small teaspoon amounts until he got better. Ryland would continue to throw up everything, so we took him to the local ER. After about 2 hours an IV, and doctor exams we were able to leave after he took a bottle and kept it down. He then returned to his “baseline” as if nothing happened. The doctor discharged us with a stomach virus diagnosis and advised us to give him a week of gut rest and try the rice cereal again in 7 days. The week came and went, and on the 7th day we tried the rice cereal again. Ian, my boyfriend and Ryland’s dad, advised against doing it, thinking it was the rice causing it. I said, I’m taking the doctors advice it’s not the rice and I want a nights sleep. Welp, 4 hours later he vomited to shock, again. We rushed to the er, left 4 hours later with the same diagnosis, stomach bug. Now, his father AND I knew it was the rice. The next day we went to the doctor for a check up. He said as well, definitely was a stomach bug. Over the next week, I pulled several all-nighters, and against doctors advice, i googled and researched until I found an article about “Fpies”. Boom, that’s it. I called his pediatrician told him I knew the problem and I needed an appointment with the only doctor in SE Michigan recognized by the international Fpies board. This was the first of many many times when being your child’s advocate paid off. It landed me in the office of an experienced Fpies doctor. It gave me a diet to follow for introducing foods and I never experienced an episode again. I also was able to share this diet with other moms in the FPIES Facebook group.
I became his advocate for his ptosis in his eye, his neutropenia, his epilepsy, his failure to thrive, his delayed walking, his basilar invagination, and many more diagnoses. When children’s special health care asked me what specialist managed his care, I smiled and said I do.
When Ryland was 1 years old and his list of diagnoses was rapidly growing with no common denominator to diagnose him with, my pediatrician ordered a genetic array test. Two weeks later the results came. A micro deletion of 2q23.1 gene. The pediatrician's office manager called me and told me this was a most likely benign deletion. We felt relieved, and now waited 6 months to get into a geneticist to discuss further. That day came and I will never forget it. We sat in the exam room with Ryland as the geneticist sat with him. I stood, Ian sat. He looked at us and said "Yep...he will never talk, you will probably get him an iPad to communicate. The genetic counselor will give you a packet of info. This is very rare but he has seen 2 other kids in Michigan with it. Neither talk and both use an iPad." Our hearts sank and never were we the same.
We grieved and cried for weeks. I was quicker to cope than daddy. Ian had to mourn the loss of the father son relationship he always dreamed of. There wouldn’t be daddy and son soccer games, or golf games, or even conversations about girls. We moved out of a kid friendly neighborhood as it brought him sorrow to see the kids outside playing with their siblings, friends and dads.
We began therapy, both together and apart. Fast forward to Ryland having a spinal fusion surgery and being in a halo for 12 weeks. (And being the smallest, yet not the youngest to have a halo). At the 4 month post op appointment we found out it was a failure and needed a more extensive redo as soon as possible. I was devastated. I was sad that Ryland would have to go through the pain, the hospital stays, the immobility, the torture all over again. I walked into my first therapy session after the news and cried telling my therapist how sad I was for him. She looked me in the eyes and said “well, no one is making you stay with him, you can give him up for adoption, that is the reality” WHAT IN THE ACTUAL ******!!!!!! I still to this day get so angry thinking she could look me in the eyes and straight face say that to me. I would never give up on my son. I was just sad. I was not sad for me. I was sad for him! Needless to say after that session I knew I would never respect this woman again. She not only said that horrible statement, she made me feel like I can not share my emotions with out being ridiculed.
I now ask myself, “why am I sharing this with the world”? The answer is this: I want everyone to know that Ryland has given me more joy than these awful experiences. He has given me a purpose I never before had. He has made me stronger, smarter and way more patient. We celebrate every little accomplishment. We cheer and celebrate finishing a whole meal. We cry tears of joy when he walks around the house pushing his shopping cart. I have a big place in my heart for the strangers who adore him too. I have zero tolerance for the negative. What makes me extra lucky? I have an extra special son. One, who is loved by soooooo many people it blows my mind every day. Parents of special needs kids really are extra lucky. It may take a lot of perseverance, and dealing with some yukky people. In the end, you come out luckier than the rest. That is for sure.