Support for Parents

Being a parent is the most amazing and beautiful vocation that one can experience. We have so many hopes and dreams for our children. As parents, we instill these aspirations in our children. The emotional highs we experience are exhilarating: when we see them smile for the first time, take their first steps, and say “mama” or “papa” for the first time.  And of course, you never forget their first day of school. The anticipation of seeing them explore and learn from their little world is fulfilling but it also overwhelms us with concerns and fears, some rational, others irrational.

Having a child diagnosed with a chronic disease such as ankylosing spondylitis (AS), or by that matter any form of spondylitis, forces us as parents to embark on an emotional roller coaster ride with many highs and lows, twists, and sudden turns. It’s an experience we would rather not be forced to endure. I was forced on this ride in the spring of 2017 when my then fifteen-year-old son, Miguel, was diagnosed with AS. I remember experiencing a deep sadness and fear; sometimes I would cry myself to sleep. Initially, due to my denial of the diagnosis, I was noncompliant to his doctor’s treatment plan. I would continuously ask myself, “Why my son?” and my thoughts were consumed with “What if” questions.  After getting over the disbelief and anger, I was able to refocus and follow the treatment plan. I also recognized the importance of early diagnosis. I am very grateful for my son’s rheumatologist, Dr. Robert Sheets, M.D. at Rady Children’s Hospital in San Diego. He is patient and supportive. Not only has he educated me about the disease, but he also referred me to the Spondylitis Association of America (SAA) website for additional information. Having a better understanding and knowledge about the disease has indeed empowered me.

Without a doubt, AS has transformed our home. For example, my son decided to complete his high school education by participating in a virtual home-school based program. Arriving late to school and absences caused by pain and fatigue were taking a toll on him.  Although this has meant not being able to apply to his dream college, he has grown exponentially since starting the home-based program. This is not to say he has not experienced difficult moments and he prefers not to talk about the AS. However, when necessary, he is open to talking. I always make sure to give him his space.

It is normal (and human) to try to search for answers in the past. I still ask myself many questions as to what I could have done before the diagnosis:  What if I would have insisted on further testing when he was thirteen and experiencing symptoms? What if I would have taken better care of my son? I also find myself placing energy in the future:  What if the biologics stop working or what if my son experiences negative side effects due to the medication? This is both emotionally and physically debilitating.

To be clear, the uncertainties are exhausting. As parents of children with a chronic disease, we need to be strong for our young warriors because having any form of spondylitis represents a lifelong challenge. When we are grounded in the reality of the condition and have knowledge about the disease, we can construct positive ways to face the disease. We need to see that our children can thrive despite their illness.  We need to embrace the periods of growth, improvement, and progress which will strengthen us for the low moments.

Hope gives us the motivation to continue moving forward and is reassuring.  Immerse yourself in positive affirmations. When experiencing a low moment, if possible, take some time to care of yourself. For example, when I am experiencing a difficult period, the key word I use with family and friends is “hermit.”   When they hear that term, they know I need time alone in order to restore my positive thoughts, spirit, and energy.

Although having any type of spondylitis is a roller coaster ride one would rather not undertake, understand that you are not alone. Just take a moment to refocus and reflect and know that the SAA and the volunteers are here to support you, your child, and your family. Search in the deepest part of your heart for the strength and courage to continue advocating for your young warrior.  Besides, your child needs the unwavering, resilient parent that you are!

When I approach a child, he inspires in me two sentiments; tenderness for what he is, and respect for what he may become. -Louis Pasteur

For my personal bio, please search the SAA website under Support Groups, SoCal Parent Support Group.