In the early days of Gage’s diagnosis, I would try my best to take things one day at a time and celebrate each accomplishment as it came. I didn’t realize I was doing it at the time, but I had a mental checklist of ways we were in the clear. A check up at the pediatrician confirmed he had gained a few ounces…yay! A visit to the ophthalmologist let us know his eyes looked healthy…hooray! The audiologist established that he was hearing all tones…awesome!
It was so naive. Because truth be told, we were never out of the woods in any situation. Don’t get me wrong, we are so thankful for all the strides and gains Gage has made and I count each and every day of good health as a huge blessing. He’s doing really well lately. Others notice it and so do we. And I still value celebrating each accomplishment, no matter how small. But the scary risks and unknowns don’t go away. Gage has never made it onto the growth charts for his age. He needs glasses to help him see. We’ll keep checking hearing indefinitely. I would love to have a fix for every issue and the reassurance that our struggles are in the past, but that’s not our reality.
2 days ago, Gage had another seizure. It’s the second one he’s had. This time, we were at feeding therapy when it happened. Again, we were lucky to be surrounded by other people there to help. Again, it started slowly and was hard for me to recognize. Gage’s distant stare is also a mechanism he purposely uses to avoid things he doesn’t want to do, which I thought was what he was doing at first. But when I couldn’t get him to respond to his name or make eye contact with me, and especially when he showed no response to playing music or blowing bubbles (his favorite distractions during therapy) I knew something more was happening.
As we moved Gage from his chair to the floor, it seemed like he started to respond to our voices, and at that moment, his eyebrows started twitching up and down and his shoulders started jerking. I decided not to wait any longer and administered his emergency medicine. It took a few minutes for it to take effect, but eventually his uncomfortable movements and labored breathing turned to a peaceful sleep—a result of the meds.
The gracious faculty, staff and student at MSU were so awesome. They assured me we could stay there as long as we needed, which is exactly what we did while Gage slept. They made helpful suggestions, like writing down the way things happened so I could remember when it came time to talk more with the doctor. I was also lucky to get a call back from the nurse at our neurologist’s office in record time. She walked me through what to expect as the meds took effect.
Obviously I never want Gage to have a seizure, but I feel lucky that in both instances we were around others who were able to help. Questioning what to do and how to respond is one of the hardest parts, and I was glad to have others input as we walked through it. Talking afterward, I was asked when Gage’s last seizure happened and told them over a year ago—just long enough to give me a false sense of security. I never imagined we were completely out of the woods, but it was long enough for me to feel confident about our choice not to use daily preventative meds. Now we’re faced with the same tough choices a second time around…and another reminder that we are definitely not out of the woods.
I am in no way suggesting that we should live in fear or always be waiting for the other shoe to drop. I still wholeheartedly believe we should expect good things, but in our world that goes along with trying to be as prepared as we can, learning as much as possible and at times taking a leap of faith that we’ll figure things out and do the best we can for our kid. I hope this post doesn’t seem too negative or pessimistic, I just felt like I needed to share our experience and the feelings I’m wrestling with because of it. As always, I appreciate your prayers for Gage and for wisdom for us to make good choices and not let fear take over.
“When I am afraid, I put my trust in you.” Psalm 56:3
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7
“For God has not given us a spirit of fear, but of power and of love and of a sound mind.” 2 Timothy 1:7
Your post doesn’t sound negative or pessimistic my sweet friend. You are talking from your heart. With all that is happening in this crazy world right now, it is easy to let fear take over. Every parent has fear for their kids. And yes even grandparents. But thankful we have a God who is ultimately in control and when we talk with Him, He takes our fear away. Sometimes moment by moment, which is why we should talk to Him a lot. Love you heart. You are amazing!
Thank you so much, Lori! Hugs!