***TRIGGER WARNING: The following may cause trigger emotions for anyone that has experienced trauma during birth and delivery, and/or having a child with disabilities.
What is it like to have a child with severe disabilities? Depending on which day you ask me that question, I could give you a different answer each time. To sum it up in a few words, it has been a bittersweet roller coaster ride of emotions. A ride quite frankly I did not want to be on in the beginning, and I have wanted to get off from time to time along the way.
The beginning of Ryland’s life was hard for everyone, but I will just talk about how I felt since I am the one here writing. My memories of that first year are a foggy haze for most of it, because the event was traumatic for me where I blocked it out still to this day, almost 23 years later. I do remember having a tough time delivering him, and my first moments meeting him was seeing a blue and lifeless baby taken away quickly so that the medical staff that came running into the room could start resuscitating him before rolling him out of the room. That was the beginning of my journey with Ryland. He was nothing like the able-bodied child that I was expecting to have as a son. My dreams I envisioned for him of what he would be like as he grew up died the day he was born. It took me years to mourn the loss of the child I thought I was going to have and accept the child I was given. The first year, I went through the same grieving process as if I lost a child. Not a day went by that I did not cry. The first year was extremely hard despite still having him in my arms. I had to learn how to accept the child I had and let go of the child I thought I was going to have as a son.
His life expectancy was supposed to be short. Doctors in the beginning threw out numbers like eight, ten and somewhere along the way I heard of age twenty for how long someone like Ryland might live. After he lived past age twenty, I could finally let go of the dread of his impending death that never came. That was freeing not having an age stuck in my mind as being the last year of his life. You can only imagine my stress level when we were getting close to eight, ten and twenty, or in the middle of one of those years. Every time he got sick during that time, I was preparing myself for the worst thinking “This is it! He is going to die!” I would be a mess. I do not know how helpful it is to a person to give them an estimated timeline of their life, especially if it is longer than one year. Thinking Ryland was going to die at a particular age, I mourned his death a thousand times, and he is still very much alive. I think of all of that wasted energy and stress I put myself through for nothing.
As time went on, I learned to adapt and appreciate Ryland. I always loved him from the moment he was born. My love for Ryland has never wavered. What I had to learn was to accept a person with limitations as my child and try to live in a world that currently is not fully welcoming to people with disabilities. Have you ever noticed the doorways of public places? Just entering a building at many public locations is impossible if you were alone in a wheelchair trying to get into a building that did not have an automatic door, and difficult even if you had assistance. If you are not in a wheelchair or pushing someone that is, people tend to not think of how hard it might be just to get inside of a building or house. And that is just getting in the door.
Life with Ryland is very routine. It feels like the movie, “Groundhog Day” which can be very overwhelmingly monotonous at times doing the same thing day in and day out with no change. Having fun as a family and getting out of the house is especially important. Having fun is great for morale, the mind, and soul. I am always trying to schedule something fun to do in our calendar. The last three months of the year are my favorite because there is so much to do with all the holiday festivities that I know it will be fun yet utterly exhausting.
Since it can feel like the movie “Groundhog Day” every day, knowing Ryland’s body language has been like learning a second language that only the people close to him can decipher. Caring for someone day after day is a very intimate way to learn their tendencies and who they are as a person. I have always had the desire to be an expert at something. I always admired people who were so smart at one particular thing and held so much knowledge about the topic. I wanted to be smart like that where people would come to me for advice about the matter. It is not exactly what I initially imagined, but I feel like I became an expert on Ryland. When Ryland is in the hospital surrounded by doctors and nurses with years of experience treating patients, I am the only one in the room that is the expert on Ryland. Since Ryland can not speak and I am his voice, they ask me all the questions. I am familiar with his body language, his history, what his body normally looks like, and his typical behavior. I can tell when his body starts to swell, or a rash develops before a nurse notices. I can tell when he is not better despite what the lab results or x-rays show by observing his behavior. I have argued with a doctor who believed he had pneumonia while I knew he did not have pneumonia because they were referring to an x-ray that was hard to read due to his scoliosis. I know his history with asthma and the fact that he did not need any breathing treatments at the time and was showing no signs of labored breathing told me he did not have pneumonia. So far, I have been right every time. While they read test results that are necessary to make an informed decision, I read Ryland’s body language. Both sources of knowledge are like puzzle pieces needed to figure out how to heal Ryland when he is sick.
My emotions have been all over the place throughout my journey with Ryland. I have cried on the bathroom floor in a hospital begging God not to take him away from me yet because I was not ready. I have also asked God for it to be over because I could not take it anymore. I have been frustrated, overwhelmed, sad, happy, angry, grateful, isolated and alone, been in awe, felt so much love and appreciation for being his mom, proud, asking God in the midst of a meltdown why I had to be his mom, envious of other moms who had healthy children (before I had two of my own), feeling like I wanted it to be over to not wanting it to end. I have been like a pinball in a game where I have felt it all and experienced all the emotions. Our story has been beautiful. I can look at the hard parts and take what I have learned and be appreciative for the lesson. My journey with Ryland shaped me into a person who is stronger, more compassionate, and more empathetic. I feel blessed to experience the positive parts and feel grateful anytime I feel the rare blissful feeling of awe each time I am witness to the beautiful moments where Ryland has the power to bring out of other people during their interaction with him. He is like a mirror and reflects the essence of a person’s soul. How people respond when they see or talk to Ryland reveals so much to me without the other person knowing. I am grateful for our bittersweet journey together that has molded me into the woman I am today. I am grateful to witness and love the beautiful soul that is Ryland.