When I was 29 weeks pregnant with Kason, we had a 4D ultrasound of our sweet baby at an ultrasound clinic not affiliated with our routine obstetrician clinic. The ultrasound tech noticed that something wasn’t quite right about his brain so the clinic contacted our OB/GYN & we were seen by him the very next day. We were then told that something was very “wrong” with Kason although we choose not use that term. We were referred to many specialists & were seen every week until the week Kason was born. Seeing him every week was such a blessing to us!

At 33 weeks, we were advised to terminate the pregnancy because Kason would not survive birth; “continuing the pregnancy would be putting myself at an unnecessary risk”.  We declined that “advice” & continued our pregnancy. At 39 weeks & 6 days, December 19th, 2016, we welcomed our absolutely perfect baby boy into this world. He was born seizing which scared everyone beyond belief. We spent a week in Arkansas Children’s Hospital following his birth just as a precautionary measure & we were then sent home.

On March 8th, 2017, he had one of the scariest seizures of his life while at home & passed out. In those moments, we thought it was over. My husband performed CPR & was able to resuscitate him while I was on the phone with 911. Although his first year of life was the absolute best, we lived every single day not knowing what to expect because of that moment.

Shortly after his 1st birthday, the seizures returned & unfortunately, never stopped.

In July of 2018, Kason had an 11 minute seizure which was followed by a very long hospitalization, ultimately resulting in him getting his first feeding tube.

In February 2019, a little over two years after his birth, we finally got our GRIN1 diagnosis!! A HUGE weight was immediately lifted off our shoulders. Until that moment, we had no idea what to expect as far as life expectancy. We had no idea that our baby was expected to live a long life! Even then, we were so thankful for the time God had loaned us.

In July 2020, Kason & I had our 8th life flight together. He had been placed on a ventilator because of aspirating during a seizure. Again, we thought it was over. We were so terrified that Kason wasn’t going to be strong enough to come off the vent. The first few days that Kason spent on the ventilator, I remember staring at him counting his breaths, thinking “this is it… I’m going to have to make a decision.” I absolutely did not want to be put in that situation. During the 8 days he was ventilated, I composed his obituary…. Just in case. I knew that if I did it then, I would be more able to, than if he were already gone. After 8 long, miserable days of being on the ventilator Kason was finally stable enough to try to come off the ventilator!! He did SO great & shocked us all with the most perfect smile!! We were in the hospital for over a month during that stay.

We had a few more shorter hospitalizations following that one but his last hospitalization was in 2021! He had been well enough for over a year!! At that point, we began to think that maybe he was “in the clear”. This would always be our life & we were okay with that! Things were going great for so long… until they weren’t.

In August of 2022, we began planning for our precious boy to start KINDERGARTEN!! The same baby that wasn’t supposed to survive birth was going to “big boy school”. His first week was the best week! He made new friends. He had the best teachers. He was living his best life…. Until the very next week on August 22nd, 2022, when we tried waking him up for school, our precious boy was gone.

His passing took the breath from our lungs.

The one thing that our entire lives revolved around was gone & we had to learn how to “walk” all over again. Every single aspect of our lives had suddenly changed & not for the better. I vividly remember climbing into the ambulance while holding him, asking the paramedics, “what hospital are you taking us to?” Their response was, “oh honey, we’re not. I’m so sorry but we’re waiting for the coroner.”

To this day, I still say that if it had not been for our other child, Kaine, they’d have taken me with Kason, also. I will always be so thankful for my children but Kaine forced the air back into my lungs, immediately after Kason’s passing. I knew he still needed me & I knew that as much as I was hurting, I couldn’t let him hurt too. After all, he was only 18 months old.

Although MY world stopped turning that day, the actual world, unfortunately, did not. The show had to go on. I returned home weeks later. I returned to work. Nothing was the same. I became a whole new person, just as I did the day he was born. I started drinking… & I couldn’t stop. I needed something to help ease the pain, even if it were for just a moment. I didn’t care that the high had a much lower low.

It wasn’t until October, just 2 months later, that we found out we were pregnant with the most precious rainbow, sent straight from Kason & God himself… our daughter, Zadie Mae. Much like Kaine, she was the light we needed in the deepest darkest pits of hell we were living in. I HAD to stop drinking. I had to FEEL all the emotions I was trying to hide from myself. I didn’t know the true meaning of BITTERSWEET until that moment.

That same month, we decided to start a Memorial Scholarship Fund in memory of Kason. As a fundraiser for that scholarship, each year we host a 5K marathon event where people come from all over to walk or run in his memory. As funds allow, we award scholarships to high school students who are pursuing the medical field, though students who are interested in pediatric nursing do have priority. One of our “requirements” to apply for his scholarship is that the student must posses some of the same qualities & attributes that Kason once did but more specifically inclusivity, kindness & compassion. It is our ultimate goal that one day these students may some day have a part in finding a cure for GRI disorders that devastatingly keeps taking our children from us!!

Losing Kason is single-handedly the hardest thing I have ever been through & will ever go through but it is my hope that someday through his scholarship, that we all may receive sunshine when our skies are gray.