The Beautiful Journey

Just a few short weeks ago, I heard the words that I didn't expect to hear: "We have a diagnosis for Ezra..." A few days before that day, I received an email from our UDN genetic counselor, informing me that they wanted to meet "to discuss some results that they got back from Ezra's testing and next steps." There was so much to read into that sentence. After mulling it over (aka, dissecting it, and over analyzing it over and over and over again), Eric and I decided that I would go with Ezra and he would go to work as usual and we would Facetime him at the appointment. Because of our previous experiences with genetic testing all coming back normal, Eric and I came to the conclusion that this appointment wouldn't be any different. We didn't want to get our hopes up. She had mentioned "next steps", so we figured they would suggest further testing. Needless to say, we were cautious and not very optimistic about this meeting. So on that Wedn

At a recent visit to Ezra's neurologist, we ran into one of the neurology fellows that had been quite involved in one of Ezra's first hospitalizations on an epilepsy unit last summer. So many emotions suddenly hit me when I saw her. As you could imagine, it was bittersweet to see her. She is physician that you could only hope to help take care of your child. She is sweet, very kind, caring, compassionate, has a soft spoken voice, and had words of comfort and support during a bitter, hard and fearful time...  When you start researching "Infantile Spasms"or "West Syndrome", as it's also known by, you'll come across some worrisome and frightening words such as: extremely rare, very serious, catastrophic ... This is what Ezra was diagnosed with last summer, in June 2018.  One morning in early May 2018, I had put Ezra into his feeding chair for breakfast. As I was feeding him, I noticed a subtle quick nod his head. Now, as a Mom of a special ne

My son recently went through Vagus Nerve Stimulator (VNS) surgery.   This surgery is an equipment implant to the Vegus nerve in order to help mediate seizures.   The surgery was successful, and weeks later my son is already showing some positive improvement.   However, every evening post   surgery proved to be one of, if not the hardest moment of my life.   I share this moment for us “tough” guys who believe they should not show emotion when faced with troubled times.   I share this moment to highlight the strength of a mother, my wife! My son, my only son, Ezra post-surgery had two stitched up and sensitive areas on his body that my wife and I would have to tend to nightly. The surgical incisions consisted of left chest, just above the heart, and the other, left side of the neck. Every evening post sponge bath it was my job to hold my son down while my wife tended to his wounds.   My wife’s strength and commitment is truly beyond belief.   I witnessed her flip a switch and go from

“How many attempts or how much time would you give your child the chance to walk?...AS MANY ATTEMPTS, AS LONG AS IT TAKES!”    Tony Robbins, a motivational speaker presented this question to the audience in order to draw a comparison on goal setting and our general failure to achieve a set goal. Those who say, “I have tried everything.” Have not.   Furthermore, the saying limits a person’s positive attitude towards accomplishing their goal.   Most people attempt several times towards a goal and simply make excuses for giving up. My son does not give up…   Today was the infamous leg day at the gym. A day I love, but hate so much.   As I prepared for a one rep max squat I wanted to give up.   Instead, I thought “what would Ezra do?” I brought up a picture of my son attempting to craw on my iPhone, looked at it, and hit the squat with the same attitude my son brings forth every day in every task.   Post lift I was almost brought to tears, not because of the heavy lift, but be

This week we visited Duke Children's Hospital as a family. Yes, as a family, our four year old daughter got out of school and joined us all dressed up as Wonder Woman, "I want to be strong for Ezra daddy!" I swear some days this girl has more courage than her parents when dealing with the unknown of Ezra’s future. I love how she treats what seems to be constant visits to hospitals and clinics for Ezra as a normal family outing. Moreover, she does it with super hero fashion and a smile for days. I guess in her own right she is a super hero.   What other four year of kid sees her brother go through multiple seizures, trips in ambulances, and asks mom and dad what she can do to help.   Zara had no idea why we were at Duke Children's Hospital, she just knew she had to be a supportive big sister. However, our visit was for a specific reason. Ezra's visit was for a surgical consultation on the Vagus Nerve Stimulator or VNS ( Source 1 ). The VNS is a treatment for

We are a family; A family filled with love and admiration for each other. We are a family learning to live a different life than we had imagined. We are a Mother and a Father of two beautiful and amazing children. A strong-willed, stubborn four year old little girl and a two year old little boy who teaches us every day what it is to be a fighter, a warrior, to be brave and to persevere...  Our son keeps us on our toes: He has developmental delays, low muscle tone, has not yet started crawling or walking, but is able to sit up unassisted for short periods of time. He is non-verbal, but communicates his needs through sounds. He is not able to self feed and has difficulty chewing foods, but has made great improvement over the year. He has some visual impairment and sees better from the sides of his eyes. To top off the list, he has seizures that are difficult to control.  My husband and I have witnessed our son go through a lot, to say the least. The experiences that our little g