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Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

“If you spend too much time waiting for the storm, you’ll miss the sunshine.”

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Day 5 of Blogging for TSC Awareness Month

by guest blogger Amy Dublinske  (Kansas City, Missouri)


kier06“If you spend too much time waiting for the storm, you’ll miss the sunshine.” A wise quote to live by, though easier said than done when battling a chronic illness.  Realistically, with the tribulations of tuberous sclerosis complex it does feel like you are always waiting for the other shoe to drop, waiting for the train that’s about to hit you or walking through a land mine.  Our journey with TSC officially began one decade ago today, 05/05/05.

Cinco De Mayo is the ultimate celebration in the United States and kier03-2Mexico.  A day observed to commemorate Mexican army’s unlikely victory over French forces.  For the past decade Cinco De Mayo has carried a new meaning for me and my family.  On May 5th, 2005, our precious daughter Kierstin Gabriella was born….with tuberous sclerosis complex.  May 5th now marks the day we officially entered “The TSC Club.”  The dreaded diagnosis that we truly feared that may just become our reality.  Cinco De Mayo has truly been a bitter-sweet day for the past ten years.

kier09While pregnant, doctors told us that there was a 50/50 chance that our baby girl had TSC due to numerous cardiac rhabdomyoma tumors.  We researched TSC.  We talked to several TS families but were plotting out how we would tell them the day that they determined that our baby “really didn’t” have this awful disorder after all.  Denial is a happy place, Right?! Unfortunately that day never came and we were officially inducted into “The Club.”

I can clearly recall the cardiologist trying to gently explain Tuberous Sclerosis to this very pregnant mom-to-be for the first time ever hearing those words uttered. Though his English was broken, the one thing that was abundantly clear in any language were 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 communicated rather clearly.

When leaving the hospital, while nearing the elevator I witnessed a mom pushing her infant daughter in a stroller.  She began lifting her in the air and playing peek-a-boo with her to the point of the baby belly laughing.  I suddenly became weak in my knees and collapsed right there on the floor at over eight months pregnant. It suddenly struck me that we may never have this with our baby girl or may never experience the privilege of hearing those belly laughs.  How could this possibly be happening to us and to our precious daughter that we longed for years to have? We had so many hopes and dreams for this little one and all those dreams seemed to be suddenly shattering with just one sonogram.   I think at that very moment I knew in my head that she had TSC, yet my heart wasn’t willing to accept it.  The next month is a complete blur as we prepare for the unimaginable while still holding onto a small shred of hope that they might be wrong.

Essentially, May 5th doctors confirmed what we dreaded and the medical journey which was filled with much uncertainty began.   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 with tumors at birth.   We were devastated beyond words!  A short glimpse of the journey begins with evaluating every organ by a new “ologist.”  Countless appointments, numerous medications, relentless seizures, years of therapies, multiple hospitalizations, brain surgeries and weeks and weeks and weeks advocating and educating about this diagnosis that I have quickly become an expert on is what our “new normal” consisted of.  No one imagines their baby struggling to reach the most basic of milestones like rolling over or sitting up.  Who plans their family vacation destination in conjunction with medical appointments with specialists from across the country?  Every parent of a child with special needs grieves their child’s diagnosis at one point in time.  I remember silently crying in the shower in the mornings, so that no one would hear me.  I am ashamed to admit that I have never completed Kierstin’s baby book. Every time I would try it would be a reminder to me that she had not met any of her first year milestones, or if she did, briefly she would lose the milestone with the next seizure.

If I knew then what I know now, I would definitely have spent more time in the sunshine and less time waiting for the storm.   “The storm,” which was more equivalent to a never-ending roller coaster ride with some of the most gut-wrenching twists and turns you can imagine, has taught us how to live in constant chaos and crisis so to speak.  This journey and particularly Kierstin has taught me more about life than anything else I have ever experienced.  Throughout the years I have had dozens of people say “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 more importantly SHE refuses to let TSC define her!!

royalsKierstin 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 have so much to be thankful for.  This journey with TSC is not quite the journey of my dreams; though Kierstin is the daughter I have always dreamed of!!  This year we celebrate Cinco De Mayo thankful for God choosing us and mostly trusting us to be her parents.  We are eternally blessed and thankful for this privilege of meeting our hero on May 5th of 2005.  Many people dream of someday meeting their hero, but fortunately I gave birth to mine!! So after a decade battling TSC, Cinco De Mayo is now my day of celebrating my HERO!! Enjoy the sunshine, forget about the storm.  And Always Remember: We Will Give Everything!  But Up!!

kierstin flowers

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Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

I wouldn’t change her for anything.

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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.

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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!

blog1When 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 blogparenting.  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!!