My son...My heart...

It’s early afternoon on a rainy weekday, little one is napping (hopefully!) and big one is laying on the couch in cozy pajamas for a third day in a row. This sounds like a lovely scene taken straight from the motherhood book of fantasies, however one major exception: big one is sick…again.

Life as a mother of a child with a chronic health issue has been exhausting. And unpredictable. My son is now almost six years old, so we’ve had many years to adjust to this life of unpredictability.

Six years ago, I had a difficult health condition during my first son’s pregnancy, therefore his labor and delivery became very complicated and traumatic. He was born with mild medical needs from day one. We struggled with stabilizing his health in those first months, as I silently fought hard against postpartum depression. We thought his health was stabilizing, but by month four, he was diagnosed with a serious illness that changed the course of his life. For the next two years, my son and I worked hard to find treatment to stabilize his health to no avail. A few weeks short of his second birthday, he and I ran into the emergency department of the hospital. This had become a typical occurrence in our family, so we expected the same outcome on this night- a few hours of care, IV medications, and follow up plans. But this night was different, we were told he may not survive due to his failing ability to breathe. Within minutes, my son and I were airlifted by helicopter into an ICU for a week. My husband and I were devastated, terrified, and completely overwhelmed with the reality of our son’s health. To this day, we remain in full gratitude for those medical staff that saved our son’s life that night.

After a week, we were discharged home to an overwhelming amount of medical appointments, potent prescription medications, expensive medical bills, and lost wages from my work. I expected the bills, the medications, and the appointments. I even expected the anxiety and constant worries about his health, the depressive episodes where I felt so hopeless and pained at the idea of him suffering, the guilty thoughts about potential parenting mistakes I might have made along the way, and the shame coming from within and from others for feeding potent drugs to such a little boy.

What I did not expect was the grief. Well, let me clarify. I expected the grief about my son. As a therapist, I understand that humans grieve not only death, but also a loss of any type. Since my son’s pregnancy, I have grieved the loss of control over my son’s health. I have adjusted my thoughts and expectations about the role I can realistically play as the mother of a child with a chronic health issue. I have accepted that his health will remain unpredictable and his medical episodes will often control our finances, our social life, our work schedules, his academics and his school attendance.

But what I did not expect was my own unresolved childhood grief. See, I too had a chronic health issue as a child. I was diagnosed with a rare heart problem at age ten. This condition impacted my physical health, mental health, academics and social life, as well as the mental health of my anxious and exhausted parents. I experienced many losses as a result of my heart condition: a loss of control over my body and the privacy I craved as a pre-pubescent girl, a loss of dignity as I went into “episodes” during the most inopportune social situations, and a loss over my ability to live and socialize in a carefree manner. For 13 years we coped with unending heart monitoring, doctors visits, emergency interventions, daily medication, and silently struggled with our own anxieties. Finally, I had heart surgery to remove the extra nodule attached to one chamber causing my heart problem. The surgery was terrifying, but to make matters worse, the doctors called code blue because my body went into distress. I will never forget the tears in my mother’s eyes after I was stabilized. Or that my sister passed out when she heard the news! I am grateful for those surgeons because my heart is completely healthy and normal now. And I can always smile knowing that I was born with too big of a heart- quite literally.  

I recently began to understand how my own unresolved childhood grief impacted my ability to remain emotionally present for my son. When he experienced a medical crisis, I found myself feeling helpless, hopeless, and going to a deeper level of fear and shame. I believed something might be inherently wrong with his body, due to my own flawed body and abilities as his mother. I was struck with the intensity of these emotions and thoughts. I realized these beliefs did not arise during my son’s lifetime, but rather have been stuck with me since I was a young girl struggling to understand a rare and scary health condition.

At the young age of ten I conceptualized my body’s struggles as evidence that I was inherently fragile, weak, and physically inferior. I misunderstood the science behind my body, so created my own set of beliefs based on the only system I knew. I come from a cultural and religious background that believes in bad luck and karma. Most cultures and religions throughout history have passed on stories and legends of the evil eye, curses, and the consequences of our sins. Our ancestors did not have access to science, therefore they made sense of their world through their own belief systems. I understand and respect how these belief systems helped explain the unexplainable, while providing tools and rituals to calm one’s fears. But now I realize I misinterpreted those ancient beliefs, and instead created my own beliefs filled with shame and fear about my body’s inherent unworthiness.

I have learned to become aware of my thoughts and emotions as I begin to re-experience that place of helplessness and hopelessness, a place of fear and shame, a place so familiar from childhood. I remind myself to remain present and practice breathing exercises to allow my body and mind to relax. I try to remember, as I take care of my son, I also need to take care of myself. I give myself permission to feel my emotions, journal, cry, talk, dance, sing, exercise, whatever my body needs in that moment to heal those memories. I give myself permission to grieve...and to accept. 

Many parents struggle with longstanding patterns of thoughts, feelings, and/or behaviors that impact their ability to remain present with their child. Parents often see therapists for support in their parenting journey. Therapists can help parents work on creating strategies for their child’s needs, but also the parent’s own needs. Together, we work hard to understand and validate a parent’s emotions, and begin to uncover their pain, their grief, their fears, and their own childhood experiences. We work on being mindful, or aware, of their inner child. We work on respecting that inner child, and understanding his or her emotional needs.

So this week, as my son is home sick missing school for the umpteenth time, I will remain mindful of his needs and also my own. He is disappointed to miss a pizza party at school, which was the principal’s reward to the grade level that raised the most money for children with chronic illness. He raised 25% of the total earned for his grade level, but as a child with chronic illness, he is missing the celebration. Ironic, I know. He cried and begged to go to school, my heart broke for him, and my heart broke for those parties I was also too sick to attend. We hugged, we cried, we cuddled, but most of all we remembered to remain mindful, to remain present, and to remain empathetic, to ourselves and to those children he raised money for. We grieved...we accepted. And then we called for pizza delivery…extra cheese please!