Today’s feature on The Thersday Series is one of my oldest and dearest friends. We were roommates one summer in college, attendants in each other’s weddings, and guests at our children’s birthday parties. So when her A-DORABLE son got sick 18 months ago, I felt very, very far away, unable to help. Still, it was a comfort to know that Hallie had one of the strongest support systems during Grayson’s long hospital stay—and still does. What I find most remarkable about this tenderhearted mama is her resiliency. With her son’s childhood epilepsy diagnosis. With upcoming choices to be made about his education. Even with a recent accident her father suffered which moved her yet again to model this resiliency. Hallie, Grayson’s story amazes me. So does his mama. Welcome to The Thersday Series. I’m so honored you’ve shared your story with me.
Tell us a bit about your family and, specifically, about your darling Grayson.
My husband Brad and I have been married 9 years. He is a project manager for a construction company in Lexington, KY and I am an elementary school teacher. We have two children, Elliott (6) and Grayson (5). There are certainly days that I’m certain I was crazy for wanting my children so close in age, but as they grow older it is so sweet to watch their friendship grow.
Grayson has always been my rambunctious child—he has no fear. That boy has climbed, jumped, and fallen more times than I can count. We were on vacation in 2017 and while walking to the beach Grayson fell. I chalked it up to new flip flops and his feet adjusting to the uneven sand. But over the course of our weeklong stay, I noticed several other falls, though they were always something I caught out of the corner of my eye, and Grayson never missed a beat; he would just get back up again and continue whatever he was doing. Our last night at the beach we were walking to dinner and he fell again, but this time I saw it from start to finish. He fell down like he had lost all control of his body and then bounced right back up. This time he was upset because he scraped his knee. When I asked him how he tripped, his responses were confused, like he didn’t know what happened. Something was not right.
Back home the next day, I expressed my fears to Brad who encouraged me to take him to our pediatrician. The following Monday, we had an appointment. I had witnessed several other falls in that time period and recorded them all just in case. I could hear the doubt in the nurse’s voice while I explained what was wrong. But then, it happened. He fell right in front of her. She ran out of the room calling for the doctor. Our pediatrician did a whole battery of tests on him and finally told me that, while it was odd behavior, Grayson passed all his screener tests. He referred us to the University of Kentucky Children’s Hospital to see a neurologist. When I called to make the appointment the receptionist informed me that he could be seen in October—OCTOBER! It was June 5th.
That week I watched his falls become more frequent and I knew I couldn’t wait. I called Cincinnati Children’s Hospital and begged for an appointment. They squeezed me in that Friday. I remember being so nervous the night before his appointment that I couldn’t sleep. Would they look at me like I was crazy and say nothing was wrong? The next morning, I told Brad not to come with us, we wouldn’t be there long. I dropped Elliott off with a friend for a few hours, made plans to play with friends that afternoon at the pool, and headed to Cincinnati for his appointment. We were only in the office for 15 minutes when the neurologist explained to me that they were going to admit him because they were sure he was having seizures. Seizures? My child? I was not prepared for this.
They immediately hooked him up to an EEG and assured me that though it didn’t hurt, Grayson might find it uncomfortable. I had to hold him down while he wailed and three techs hooked him up. Within 30 minutes of being on the EEG, the neurologist on duty told me Grayson already had several seizures they could see on his report. They wanted to start medication. The whole process was so overwhelming, but my sweet 3-year-old continued to introduce himself and his bunny to the doctors and nurses, and ask everyone ask them their name and what they did at the hospital.
He would stay hooked up to that EEG for eight long days. Eight days of being by his bed and trying to entertain my 3-year-old while doctors experimented with new combinations of medications. We were told he had to be seizure-free for 24 hours before he could go home. On day six, he went 22 hours—he was so close—but then they started again. He was scared and didn’t want me out of his sight. He finally made it 24 hours and the doctors announced we could go home. . . with a helmet. The poor kid had endured tests, needles, pokes, and so many medications, and now he had to wear a helmet all the time. You know what though? He did it without complaint. Grayson truly amazes me daily.
What does resiliency despite circumstance mean to you?
It’s funny, a year and a half ago this question would have meant something completely different to me. I understand that what Grayson faces isn’t life ending, but it’s definitely life altering. To see your child go through so much with a smile on his face, it’s amazing. I have learned more about him and myself than I ever imagined during this time.
After Grayson’s initial hospital stay and diagnosis, I didn’t feel comfortable. With each question I asked, the doctor would answer, “I’ll consult my colleagues” or “That’s a great question.” My mother’s instinct—which I’ve learned to trust—kicked in and I started seeking a second opinion. Though a second opinion meant starting all over again with tests, blood work, etc, I knew that it was best for Grayson. The difficult part for me was trying to determine how to explain it to an almost 4-year-old in terms he could understand.
Our new team of doctors began doing blood work frequently to make sure his medications weren’t damaging any vital organs. I specifically remember one day Grayson knew what they were about to do, and started crying. He begged me for “no ouchies” and I tried to explain that it was all to make sure he was okay so he could get better. When the nurse finished taking his blood, he told her thank you and gave her a huge hug. My heart melted. I truly believe he understands that while it may not feel great or be fun, it’s necessary and they are only trying to help him. Now that’s resiliency.
We’ve just rung in 2019. Tell us how goals and dreams look different for your family now than in years’ past.
Our goals and dreams for Grayson and our family are more short term now. Let’s try and make it a few weeks without a seizure, let’s try to make it a month, six weeks. Along with the medications come side effects, some not so wonderful. We are continually working with him on goals to help him overcome some of those side effects and behaviors.
This next year, Grayson will face a lot of challenges. He will start kindergarten and we have to think about what is best for him in that setting. He is already behind his peers and will need extra help. Will a label change the way people look at him or treat him? Will we go that route? Will no more naps mean more seizures at night? Will he be able to make it through the day and keep it together without a nap?
What piece of wisdom would you offer another parent experiencing a sudden change in their child’s health?
Always trust your gut and continue to seek other medical opinions. Don’t be afraid to ask for help. There were so many times when I was on the edge of losing it. While trying to process all that changed for him and just wanting a “normal” life for him, I worried that others were judging his behavior and my parenting skills. I have another child whom I worried was missing out on time with me. Of course, it seemed like her brother was getting all the attention. My friends truly rescued me! A girlfriend of mine could just look at me and know. She was and still does always offer an ear, a glass of wine, and playtime when I need it most.
Who keeps you company on your journey?
I couldn’t have survived this journey without my girlfriends. While Brad was an awesome support, there is something about another mother who understands your doubts and fears. I have a small group of good, solid girlfriends who love me, love my family, accept Grayson for all his challenges, and pray for us.