Second Annual “Blogging for TSC Awareness Month” Day 14
by guest blogger Amy Dublinske (Kansas City, Missouri)
Every Mom dreams of having their first born daughter. They dream of their first steps, first birthday, first kiss, first prom, first love, and their wedding day. Pregnancy is an exciting time. The anticipation, planning, preparing the room, sonograms, baby showers, and the much anticipated birth. NO ONE EVER dreams of fetal stress tests, rhabdomyomas, SEGA tumors, brain MRI’s, seizures, open heart surgeries, testing, treatments, or brain surgeries. NO ONE DOES. To say that “hearing the words “Tuberous Sclerosis” uttered for the first time is a not a dream but a nightmare,” would be a gross understatement. My story begins at 34 weeks of pregnancy with my first born daughter, Kierstin.
It was April 2nd, 2005 when I walked into a Level Two Sonogram feeling “On Top of the World.” I left feeling an overwhelming amount of fear, stress, and pain. An indescribable, immense fear that I have never encountered before or again since that day. Before I knew it, we were being rushed to Children’s Mercy Hospital for further evaluation by the Chief Cardiologist. Though his English was broken, the one thing that was abundantly clear in any language was his words “we hope it is not Tuberous Sclerosis. This is a very grim diagnosis.” The next four weeks are a complete blur as we tried to live in a state of denial, but reality set in very quickly. Kierstin was born on 05/05/05. She was induced with the anticipation of open heart surgery given large rhabdomyoma tumor growth. Though her heart was more stable than initially expected, we quickly received the dreaded diagnosis of TUBEROUS SCLEROSIS. All of her organs were affected at birth. We were devastated beyond words!
When researching TSC and talking with other families, I remember hearing things such as “most children don’t have SEGA tumors, most children do not have eye involvement or kidney involvement at birth, etc. We learned that Kierstin had two SEGA tumors, she had eye lesions at birth in both of her eyes and several kidney tumors when she was an infant. Due to relentless seizures starting at eleven weeks she had two rounds of brain surgeries. She has been diagnosed with TSC2 which we believe was a spontaneous genetic mutation. Once the seizures were controlled, we began battling the developmental delays and behavioral issues associated with TSC. Life with TSC has most definitely been a roller coaster ride with many unexpected twists and turns. If I had a dollar for every time someone has said to me “You are such a strong person, this must be why you were chosen to be Kierstin’s mom.” Being strong is the ONLY option. We refuse to allow TSC to define our daughter, but sometimes the twists and turns of this roller coaster are more than even the strongest person can handle!!
Parenting a child with special needs had been the most difficult challenge of our lives, while at the same time quite possibly the most rewarding aspect of parenting. Some days I become frustrated that I have a nine-year-old who still puts toys into her mouth, cannot bathe herself or cannot button and zip her own jeans. But that level of frustration is not even comparable to the amount of pride I felt the first time I heard her say the Pledge of Allegiance, sing the National Anthem or score her first goal in soccer. Still to this day, listening to Kierstin read me a story brings on the “Ugly Cry.” We were told by doctors that she would never walk, talk, run, or sing. How can she possibly be reading me a Chapter Book? She is without a doubt a true miracle and we thank God each day for choosing us to be her parents. No one chooses TSC! No one wants their children to be born with medical and developmental challenges! But at the same time, as much as I loathe TSC and the challenges we face because of it, I feel blessed because of the positives. I have met some of the most wonderful people through the TS Alliance staff, physicians, parents battling TSC themselves, teachers, therapists who have given so much to our family and mostly to Kierstin. I have poured my heart out and gained commitments from senators and representatives who have become invested in TSC because of our advocacy. I have provided much support to new families who are walking down the same scary, terrifying path that I did only nine years ago. Because of TSC, I am the co-founder of the Tuberous Sclerosis Alliance of Greater Kansas City. We have raised nearly $200,000 collectively in the past eight years through walkathons, golf tournaments, and other fundraising events. I have discovered patience within me that I never knew existed. I have learned the true meaning of “paying it forward” after so much love and kindness has been shown to us because of TSC. Though my dreams of having my first born daughter are much different than today’s reality, I wouldn’t change her for anything. This journey with TSC is not quite the journey of my dreams. Though Kierstin is the daughter I have always dreamed of and I couldn’t be more blessed!! We Will Give Everything! But Up!!