Most of the time, I walk around just feeling numb mostly because I am afraid to feel the emotions of my reality. Since May 31, Jameson has been having more and more grand mal seizures. The first one happened on May 31st. You can read more about that in this blog post.
As I write this, I am sitting in a hospital room, watching my seven-year-old son, who is hooked up to monitors, waiting for him to have another seizure so that the doctors can capture and locate where the seizures are coming from.
What brought us to this hospital stay was three grand mal seizures in the span of 3 hours. Each one getting worse and worse. Once the third one started and timing it, we had to give him his rescue medication, which led to a 911 call for an ambulance. Then a ride to the hospital to be admitted for monitoring with an EEG and medication adjustments. This stay will be anywhere from 5 days to 10 days, depending on the seizure activity and the medication response.
It is so hard to stand by and watch as your child is having a grand mal seizure. It is the most helpless feeling in the world. It’s even harder when you strive as a parent to provide a memorable life for your child and are not able to. And not memorable in hospital stays and doctor’s visits, but memories of laughter, experiences, and FUN!
Every decision of our family’s actions is surrounded by evaluating so many things before we can even get to the decision of the things we were planning to do, like birthday parties, weddings, family outings, trips to the zoo, and even just playing at the park. How Jameson is feeling, what appointments we had for the week, where we are with our finances, how many seizures we have seen Jameson have that day or week, and how much trauma Jon, the boys, and I are feeling from that.
Taking care of just Jameson’s medical needs is an 80+ hour job in itself. Above that, we have taking care of Jameson as our child, plus his brothers, the household things like cooking, cleaning, car maintenance/upkeep, homeschooling, my working as a virtual assistant to multiple clients, working to grow the blog/consulting business we created, scheduling appointments, coordinating schedules, going to church, attending bible study, caregiving for other family members if able to, and so much more I am sure I am forgetting to list.
Jon and I know that God has given us this path as He knows we have the determination, fight, and faith that we will protect our kids the way He needs us to and knows they need.
So where are we right now? Well, literally, we are sitting at Children’s Hospital on the 7th floor, with Jameson hooked up to an EEG monitor, waiting for him to have one of his seizures. Emotionally, we are heartbroken and numb. We are praying for God’s guidance, healing hands, and grace. Mentally, we are exhausted, I would be lying if I said that we were fine and used to all of this, but each time is just as taxing as the last, and right now, at the moment, they feel worse than the last.
Doctors are trying to collect data on where these seizures are coming from so that they can create a plan to help with his healing. The possibility of surgery, changes to medication, and/or further testing are what we sit here waiting to see what God’s plan is. What plan God will use to help heal our son and our family from this cycle of hospitals, therapies, doctors, and restrictions!
We appreciate all the prayers, well wishes, and support. We are grateful to God for the grace and strength that we know he is providing.
Support and Encouragement for Jameson's Medical Journey
For those who feel compelled and in a position to contribute, we have set up a donation campaign to assist with Jameson’s medical needs and the accompanying financial challenges. Your support, no matter the amount, can make a significant impact in alleviating the stress that comes with these difficult circumstances.
If you feel called to donate, a friend has created a dedicated campaign page on Give Send Go. Your generosity will directly contribute to easing the burdens that our family is facing and will be deeply appreciated.
If a financial contribution isn’t feasible at this time, your words of encouragement and prayers mean the world to us. Kindly consider leaving your thoughts and well wishes on the Give Send Go campaign page or below this message. Your positive energy and support are truly invaluable.
We understand that everyone’s circumstances are unique, and your care is a gift we cherish. Whether you choose to contribute, share kind words, or keep us in your thoughts, we are immensely grateful for your presence in our lives.
Thank you for taking the time to read about Jameson’s journey and considering being part of our circle of support. We believe in the strength of community, and with your help, we can continue to uplift and inspire one another.