- Posted June 20, 2014 by
Lee's Summit, Missouri
This iReport is part of an assignment:
Raising a special needs child
We Give Everything! But UP!
- Jareen, CNN iReport producer
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 words "brain tumors, heart tumors, kidney tumors, mental retardation and there is no cure" were also spoken rather clearly. I can recall leaving the hospital and seeing a mom holding a young baby girl. She was covering her head and innocently playing peek-a-boo while the baby giggled. Hearing this sweet sound made me physically ill and before I knew it I felt my knees go weak and I collapsed to the floor in complete shock while eight months pregnant. 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, countless brain tumors, several large heart tumors and several kidney tumors when she was an infant. Due to relentless seizures starting at eleven weeks she had two rounds of brain surgeries to remove large brain tumors. 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 has 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 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 and adults 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 learned more about the brain, kidneys, heart, tumors, Epilepsy than I ever wanted to know. 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. Kierstin has taught me unconditional love to a higher degree than I ever thought possible. 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!!