I grew up overcoming adversity. When I was 7 months old, I grabbed the low hanging cord from the deep fryer and pulled it off the counter. This accident caused 3rd degree burn damage on 36% of my body. I had multiple skin graft surgeries, months of physical therapy, and recovered without much pain medication due to allergies. I missed out on being a dancer, gymnast, and other hobbies because I couldn't stress my new skin. People often told me I was brave for everything I was going through. But what was my option? I never knew a different course of life growing up.
My Own Bully
Contrary to how easy it would have been for me to be a victim of bullies, I ended up being my one and only. I felt at war with my body and my spirit often felt broken by the battlefield of my mind. I would beat myself up for binging on comfort foods on bedrest post surgery. I would ridicule myself when I would see all the weight I gained once off bed rest. I blamed my weight and scars on why I was single. I felt that I was watching my life from the outside looking in and I held my hurting self responsible for not having better self control and lacking the skill to rise above.
My mom saw I was hurting and brought me to the Divine Physician in the form of Adoration. There, I let God irrigate my wounds. I poured out all my hurt and asked Him why He let this happen to me. Why did He allow me to suffer? After a week of daily visits to the adoration chapel, I started asking Him to show me His place in my suffering. After all, He didn't burn me, it was an accident. My faith told me He works in the pain and suffering to bring His glory. So, I asked Him to reveal Himself. And I saw Him! Much like the “still small voice,” in scripture (1 Kings 19:12), He showed me in little ways. After a couple years I even told my story as a missionary encouraging others to let God into their physical, emotional, and spiritual wounds. However, as I was healing in the way I viewed myself, I still felt at war with my body. I couldn't lose weight and found out that was partly due to a thyroid disorder. I took medication for it, but something still wasn't right. There was something I was missing.
Finding Hope In TOB
Finding the missing piece of the puzzle was like taking off drunk goggles. I was a youth minister at the time and was sent to a weekend retreat on Pope St. John Paul ll's Theology of the Body (TOB). I learned I was a body and soul composite. I couldn't work on the physical without addressing the spiritual and vice versa. Pain and suffering were a result of our fallen world and things like mental illness, my burn scars, thyroid issues, etc. we're never meant to be a part of the story! God didn't want these things for me either! He wanted to heal everything He could for me with the promise to be made whole with Him in Heaven. I finally understood and saw the hope for what was always meant to be and would be again. I saw my body and soul relationship as it should be viewed. I was now able to discern any physical ailment with the potential spiritual ailment that was being manifested physically and vice versa. I was forever changed for the better. And praise God, because I never knew how much of a salve it would be in my vocation of motherhood.
Motherhood and Heartbreak
When my daughter Edith was born, it was the arrival of a princess. As the only granddaughter out of 7 grandchildren, everyone was over the moon celebrating her arrival. I was ready to raise her with a body AND soul mindset. I couldn’t wait to have mother/daughter talks using everything I’d learned through TOB. I was excited to help foster a soul on this earth armed with the truth given in TOB, empowering her to be confident and lead others to Christ. However, my vision of parenting Edith changed when she started having seizures at only 8 months old.
The first time she had a seizure, I thought I’d imagined it. I was giving her a bath when her hands dropped in her lap, her eyes rolled to the right, and she was unresponsive for 15 seconds. My knowledge of seizures were the tonic (or convulsive) seizures seen in movies. I made a note to monitor her, but dismissed it as being overly concerned. A week later it happened again in front of family and they confirmed it was out of the ordinary. I made a doctor's appointment but before we even got there, she had another seizure days later where her hands started pulsing in an open and closed fist and she was unresponsive for 1 minute and 27 excruciating seconds. At the emergency room we were told nothing was serious enough to admit her and an MRI would be scheduled 2 months out. But Edith’s Guardian Angel intervened. The head of the neurology department just happened to have a spare moment and came to see us in person. She had suspicions of what it was and admitted her immediately. Twenty-four hours later, Edith was diagnosed
with Tuberous Sclerosis Complex (TSC). The TSC Alliance explains on their website that:
“TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers.” (tscalliance.com)
My heart was broken. Edith could end up non-verbal? What about our mother/daughter talks? She could end up with severe developmental delays? What would that look like in the vision I had for our future life together? My husband and I took a day to mourn and feel hopeless. But then we focused on the teachings of TOB. Each life is here for a specific purpose. God entrusted us with Edith knowing full and well what she would face in this fallen world. We were renewed in hope to be her best advocates, her biggest cheerleaders, and to trust that we could still have the family we envisioned if not through a different lens.
An Unexpected Call to Share TOB
This last year since her diagnosis has been hard. TSC is a footnote in med schools because it’s rarer. I find myself more often than not, explaining her disease to her doctors before we
go in for appointments so they can do the necessary research just to have a conversation. She sees four specialists, will be attending a TSC Clinic out of state, and is in three different weekly therapies to earn back what setbacks the seizures caused. She will have yearly MRIs to monitor her tumors and take action when and if needed. We are moving forward one step at a time, because that’s all we can do. This disease presents itself as we go, as she grows. In fact, the TSC motto is “Ride the Wave” because you never quite know the next thing TSC will throw at you. But Edith will grow up knowing that she is body and soul. If she ever feels at war with her body growing up, I know where to point her for answers, healing and hope.
A New Hope
The works of Pope St. John Paul II have changed my life. First, it brought great healing. Second, it brought focus and purpose to my life. And now, it has empowered me in my vocation to raise up the souls in which God has entrusted to me and my husband. I can’t imagine what my mental and emotional state would be dealing with all this without this light of Truth, and praise our good and merciful God, I don’t have to. Thank you, Lord, for our hope. Thank you, Pope St. John Pual II, for the Theology of the Body. Pope St. John Paul II, pray for us!
