JANICE'S STORY

Janice's Story

My mother's story is so much more than her ups and downs dealing with a child fighting a rare birth defect. She, the middle of three children, born and raised in a small but bustling city in Tennessee by a single parent is, among other attributes, a successful businesswoman, a staunch supporter of community service, a breast cancer survivor, a dedicated wife, and yes, a proud mother of two. Yet, for the past twenty-seven years (as long as I've been alive), her story has involuntarily been fastened to this scary, unpredictable anomaly called AVM and connected to the journeys of parents all around the world advocating for their ill children. My saving grace as an AVM survivor, aside from divine providence, has been the support of my family and particularly the love of my mother. Abraham Lincoln once proclaimed, " I remember my mother’s prayers, and they have always followed me. They have clung to me all my life." Ain't it the truth. Read below for my mother's perspective on this journey.

Hometown: Jackson, TN

When my child was born, I thought (about her condition): She has a birthmark on her face.

As a parent, I’ve advocated for my child’s health by: Gaining as much knowledge as I can online, talking with the doctor, reading about other parents and their journey with AVM, and assisting Jaz in her quest for knowledge.

In 10 years, I will have: I hope to have a better sign of reassurance that we’ve come to the conclusion of surgeries and problems as it relates to AVM, that there will be a cure. I hope Jaz will be done with surgeries, and she will be restored and that a cure will be found so that others won’t have to endure what she’s endured.

If I could change one thing about the world, I would: Make people more accepting of individuals with abnormalities

My favorite quote/scripture/affirmation statement is: God has not given us a spirit of fear but of power and of love and a sound mind. 2 Tim. 1:7

1) Describe the medical illness of the person for which you give care? 

What was the first sign? She has an AVM. When she was born, her tongue was enlarged. As a baby, she could not keep formula down and had reoccurring mouth infections. We always had to keep a towel around her neck. The formula would just roll back out. That was the first challenge.

2) How did she eventually come to receive treatment? 

It was the age of the Internet. It was just getting popular. We had gone to a plastic surgeon and had two surgeries on her lip which was also enlarged. The doctors would reduce the lip, but after a few weeks of healing, it would be bigger than it was before. One night, her dad and I were talking. We googled "Hemangioma" and Dr. Waner's name popped up with testimonials from parents who had all been told they had a hemangioma but were misdiagnosed. They even had before and after pictures online. Then we saw he was only two hours away. It wasn’t referrals. We credit the age of the internet.

3) Who have been his/her main doctors, where has he/she been treated, and how has the care been? 

We started with Dr. Waner then transitioned to Dr. Suen upon Dr. Waner's recommendation. We received excellent care from both doctors. They are competent, they are great with her as far as bedside manner, and informative as far as giving her information.

4) How do you feel his/her health will progress in the future? 

I hope, after 30 plus surgeries, that in the next couple years we’ll be done. I hope that the AVMs will no longer be affecting her and that she will be cured, happy and whole.

5) How has caretaking for someone with a medical challenge changed your life? 

Caring for someone with a medical challenge causes one to be hopeful but fearful sometimes, cautious but optimistic. And you’re also very protective, sometimes overly protective.

6) What has been the biggest challenge with battling a medical issue from a caretaker’s perspective? 

Maintaining a sense of family normalcy as it relates to the spouse, siblings. For example, when we think about simple stuff like taking a vacation or family photos, and she is healing from a procedure and bandaged up. At times, we would think, "we can’t do this because we have to go to Little Rock, we can’t do this because Jasmine’s surgery is scheduled here."

7) What do you think a documentary about those surviving a medical challenge can achieve? 

It will give the individual with a challenge hope that anything is possible. It will give the family members and caretakers courage to withstand the demands of the health issues. And it will give onlookers a glimpse into the life of someone with a health challenge and how they overcome it.

8) What are your hopes for the future of research for the medical challenge involved?

My hope is that her current doctor, Dr. Suen, and other AVM doctors, will be able to pass along all the knowledge, expertise and training they have to new and upcoming doctors, so they can continue the quest to find a cure.

9) What has been the biggest lesson you've learned throughout your journey thus far? 

Things will happen in their own time. It’s not our will, but it’s God’s will, and we have to let his will be done.

10) What is your proudest moment in this journey? 

My proudest moment is seeing her reach milestones in spite of - graduating from college, attending Syracuse for her master, going to New York on an internship and moving to LA in spite of - to make all of her dreams a reality.