Keeping Up with Tiny Titan: The ABC's of Living with My Noonan Syndrome by Becca Yurcek

Sunday, August 25, 2013

The ABC's of Living with My Noonan Syndrome by Becca Yurcek

The ABC's of Living with My Noonan Syndrome

by Becca Yurcek

Anxiety
Bruising and Bleeding
Contractures
Drinking--- It hurts and I choke and Dr. Sheirlie lectures me.
Eating and Esophagus-- It hurts and it gets stuck.
Failing-- Schools and some Doctors don't get it.
Gagging-- gagging and wretching that hurts my chest and ribs
Heart Racing and Headaches-- which I wish would go away
Intense Pain
Joint Pain
Keeping Weight Up Challenge
Lymphedema Is painful and keeps me sitting my feet up
Migraines
Nissen falling apart and food gets stuck on top of it
Osteoporosis
Pain
Questions no one can answer
Respiratory issues Sleeping-- too much or have trouble sleeping
Teeth I wish I could smile because my teeth are so awlful
Ultrasound on my elbows and hip.
Vitamins for my anemia, folate, Vitamin B12, C and D deficiencies.
Walking I can't, I need my chair
Xanax for my anxiety
Yo Yo, the ups and downs of my days
Zofran for my nausea and wretching. My favorite Medicine.

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Our Story

In 1989 our youngest daughter Becca was born with a rare genetic disorder, (Noonan Syndrome) and while she struggled to survive, our family tumbled into poverty. With Six children we had to live below the poverty line to qualify for help to cover her million dollars in medical bills.

Becca never gave up and neither did we.

When my husband lost his job due to Becca's insurance issues, he returned to school. It is never too late to change careers. Two years of undergraduate coursework and four years of medical school were supported by delivering thousands newspapers and thrifty living...and prayer.

In the spirit of giving back we went on to adopt five siblings separated in foster care. Leaving our home of twenty years, two families who both knew adversity moved onto the Hope of a new life 600 miles away to begin the Journey through Residency and becoming a New Family. Along the way we soon discovered that our newest children would be diagnosed with Fetal Alcohol Spectrum Disorders and challenges from their histories of abuse and neglect. My strength would be tested, my advocacy skills honed to help my children with special needs. All the while bargain hunting and struggling to feed our family of thirteen on residency pay and prayer.

Our Tiny Titan showed us the gift of today and to never, ever give up. Our family CHOSE to not become a statistic of families facing catastrophic illness. We learned to live frugally, stretch a dollar, and find happiness with being together. I learned to navigate the complex world of advocating and finding help for my children with special needs. Instead of feeling hopeless, we found strength in turning the negatives into the positives.

My children are now all nearly grown, our family no longer financially struggles. My job is never dull, the kids keep me busy, there is always a battle or some barrier to cross to help my children. My husband is now a surgeon, my children make me proud as they live their lives. I have a new gift the enjoyment of being a grandmother.

With my book now published, the kids grown, I have a new opportunity... To write again... and share in the special needs world and take care of our newest addition to the family, McKellan Edward Yurcek was offically adopted April 16, 2013.

The Journey Continues.....

Keeping Up with Tiny Titan

Sunday, August 25, 2013

The ABC's of Living with My Noonan Syndrome by Becca Yurcek

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