EDDIE'S STORY

Eddie's Story

 

In the annals of my mind, there are memories of me and my father that are frozen in time like still images, stamped with an emotion instead of a date and time. Although they cover the years before he realized our lives would change forever because of my rare birth defect, some of the more poignant recollections correlate with the most traumatic moments of this journey. Leaving the local hospital after doctors said they were troubled by the prospect of trying to treat me. *Click* Lying flat on my dad's side of my parents bed as my face was racked with pain *Click* In the back of his SUV as he floored it two hours from Tennessee to Arkansas after recovery from a procedure went awry. *Click*

Still, there are other pictures, painted in vivid colors and shaded in pillowy soft light. His face each of the nearly 40 times I've awakened in a post surgery haze, anesthesia's magic refusing the quell of midnight. *Click* Falling asleep to the hum and bum of his SUV rolling over the interstate back towards home. *Click* No oozy, creepy healing process faced alone, dad's hands and heart always big enough to alleviate the unpleasant. *Click*

In this very special Father's Day edition, I present my Daddy in his own words...


Hometown: Jackson, TN

When my child was born, I thought: She is the most beautiful baby in the world.

As a parent, I’ve advocated for my child’s health by: Gaining knowledge through internet searches, reading books, asking questions of the doctors and actually providing care based on instructions from the doctors.

In 10 years, I will have: Witnessed not only a cure for AVM but a way of diagnosing AVM sooner in life.

If I could change one thing about the world, I would: Have people love others for their character and what's on the inside of a person versus what's on the outside.

My favorite quote/scripture/affirmation statement is: The one who does not love does not know God, for God is love. 1 John 4:8

1) Describe the type of medical challenge of the person for which you give care? What was the first sign? 

She has an AVM. It’s not a typical case where it’s specific to a nidus area but diffuse and extensive. After the initial surgeries, the condition returned and grew even faster after each surgery.

2) How did he/she eventually come to receive treatment? 

After continuing to research her condition with early experiences of internet searching, we located a specialist in Little Rock, AR. After seeing the before and after pictures, we made an appointment. That was the first time we saw anything similar to what was happening to her.

3) Who has been his/her main doctor(s), where has he/she been treated, and how has the care been? 

Dr. Waner and Dr. Suen have been her main doctors. She's been treated at the Arkansas Children’s Hospital and UAMS. The care has been outstanding. Dr. Suen and Dr. Waner have been God-sends. The love and care they show to their patients has been outstanding.

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

I feel within the next five years, there will be a treatment for AVM patients other than tissue removal through some type of drug treatment as well as some way to diagnose AVM sooner.

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

It has made me selfless. Her having the condition and the way she has decided to live her life has been an example. She has encouraged others to take whatever conditions God has put you in and use them to be an example for someone else.

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

Not being able to do more to take away the pain and the hurt that she goes through.

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

I think it cam provide visibility to the condition to a greater number of people and give those people a glimpse into how it is to walk in the shoes of someone with that condition. It can show how, even though you see the abnormality, the inside of the person is striving to be seen the same as anyone else. It can also be an avenue for other AVM patients and their families to see that they are not the only ones with the condition and find comfort in reaching out to other families.

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

Within the next five years - to find a treatment option other than surgeries, to remove AVM through drug treatment, and find a way for early diagnosis, if it's some type of blood test or scan.

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

God is still in control and puts us in situations that allow us to show our faith in him and strength our love for one another. It’s up to us to take that lesson and apply it to our lives.

10) What is your proudest moment in this journey? 

Jaz has not allowed her AVMs and all the trials and tribulations associated with them to waiver her faith in God or lessen her love for her family.