Mother’s Day is a day that holds the promise of joy and beautiful memories, but life often surprises us with unexpected challenges. This year, our Mother’s Day took an unforeseen turn as fear and helplessness filled the air in our family room. Instead of enjoying the beach, the view of the ocean, and savoring the meal at our favorite restaurant, we faced a daunting ordeal. Join me as I share the journey of a Mother’s Day that tested our resilience and taught us more about the true meaning of gratitude.

It was the Saturday before Mother’s Day, and my husband surprised me with the idea of celebrating Mother’s Day on Saturday instead of Sunday. I loved this idea because we wouldn’t have to deal with the Mother’s Day crowd at our favorite spot. He told me he would take care of the kids and I could just chill, until we were ready to go out. I was so grateful for his thoughtfulness because I was feeling like I was running on empty, and I needed to recharge. Like most families with multiple kids, we are extremely busy with activities on the weekends, so he took all the kids with him for me to have the house to myself and rest.

A couple of hours later they came back with flowers and gifts for me. Sylas was so happy! He loves being a part of a surprise and giving gifts. My heart was full of love and appreciation for my family. I felt so blessed. About 30 minutes later, I was helping Sylas get out the shower, when I noticed he was very quiet. I looked at him, and he was looking off to the side and swallowing hard. I called his name and asked him if he was having a seizure. He said no, but I knew he was. I immediately picked him up and called out to my oldest daughter to get his rescue nasal spray. I got him dressed and gave him the medicine. Only two to three minutes had passed by now, and he was already nonresponsive, and his eyes were locked to one side of his head. We took him into the family room, got the bucket for him to vomit in and towels to clean up the mess. This was the norm whenever he had a seizure. It was accompanied by vomiting. Everyone knew what their specific job was whenever Sylas had a seizure. We all have been trained well over the last 2 years since the seizures started. We knew exactly how to mobilize.

About 10 minutes into the seizure, we noticed that the rescue medication was not working. Our son was still seizing! My husband and I looked at each other in panic, wondering if we should call 911. We waited another 10 minutes to see if the seizure would stop, but it didn’t. By now we all were so scared. We realized this was not the typical seizure that we were used to, so we called 911. While on the phone with the 911 operator, we noticed that he was turning a little blue. My heart sank. The 911 operator then asked if we knew CPR. My husband and I both looked at each other feeling absolutely helpless and terrified. Neither of us knew CPR! I immediately started to chastise myself for not knowing CPR, especially since I have a special needs child. A few seconds later, I was rescued from my own tongue lashing, when we heard the sirens. The ambulance was approaching. We were so relieved! Our son will finally get the help he needs.

They quickly came in and took control of the situation while asking us what happened. While recanting the last 30 minutes, my son started to vomit from his mouth and nose. He also started to convulse uncontrollably. These symptoms were new. He normally did not convulse. As they administered the rescue medication, we were told that the seizure had become generalized, which is why he was now convulsing. After a couple of minutes, the medication worked, and he stopped shaking. He was now in a deep sleep. I felt so sorry for our son. His little body has been through so much, and I could not help him. I felt absolutely powerless.

The ambulance took him to the closest hospital. This was now our third ER visit to this hospital because of the seizures. They attached all the medical equipment to monitoring him and we had to repeat what happened to the ER doctor. This scene was becoming all too familiar to me. I did not want to be there. I wanted these seizures to go away as suddenly as they started. Our life was complicated enough with navigating the other things caused by Kleefstra syndrome. We certainly did not need seizures on top of them.

It was now officially Mother’s Day. We ended up spending the night in the hospital. They insisted on keeping our son in the NICU for observation. They said he had a fever, and they wanted to monitor him as a precaution. The doctor on staff told us they think the seizure was caused by the rhinovirus. Our son had a cold during the week. This was the first time we had ever heard that seizures can be brought on by the common cold. This new information made my husband and I uncomfortable because our son gets his fair share of the common cold. I was tempted to go down that rabbit hole of fear, but something in me said to focus on the now. Besides, we were so relieved to see him alert and talking. They discharged him in the afternoon, and we were able to go home to spend the rest of the day cuddling and spending quality time as a family. These are the moments I live for! This was definitely not the Mother’s Day I had planned for, but I was so grateful to be home and to put yet another seizure behind us.