Jameson is 7 years old. Fairly outgoing, loves to say hello to people (everywhere we go, even in the car at traffic lights LOL), he enjoys playing with monster trucks, cars, and dinosaurs, and loves his family a lot. His favorite thing to say, “the person he loves the most is God.” (This always makes Jon and I smile.) I strive to have the faith my 7-year-old has… While my faith is strong, seeing it from his perspective makes me feel it could be stronger.
This 7-year-old little boy just wants to be like every other kid, playing with friends, growing with God, experiencing the world that God created. But there is a damper in that thought. A brain tumor, seizures, and an immune system that is lower than most.
August 10th was the last time he had multiple grand mals, and was even hospitalized to observe and capture the seizures on an EEG – which was successful. Leaving the hospital, he was put on a bridge medication to help keep his seizure activity low while he was getting back up to the necessary doses to keep preventing seizures (while in patient they weaned him down and off to capture the seizure activity) .
Well then Friday, September 8th, while playing with his friends outside, he had his next grand mal seizure. We had to give him his rescue medication and call paramedics to evaluate him as the seizure was more than 3 minutes long (time the doctor said to give rescue). Paramedics said he was doing all right. One insisted we take him to the ER, but we called the neurologist on call first to see what they said. The neurologist called back and assured us that we can just watch him from home and that they will have our primary neurologist call Monday or Tuesday.
It is heartbreaking to see your child just wanting to be a normal kiddo, being able to enjoy being with his friends, meeting new ones, and enjoying the fun of swimming, running, and being active. But his little body just doesn’t let him.
Jon and I pray for Jameson that God would heal his brain and that He would allow Jameson to enjoy the things He created. I write this not to make you feel sorry for Jameson or our family, but to inform you of the reality in which we live. So many think they understand, but they do not. Every plan we make goes through a long list of what if’s and what is happening and what has happened, in order to even decide if we will allow Jameson or our family to participate, leaving us to sit on the sideline or not participate at all at the time. Basically walking around, waiting for the next grand mal, and trying to prevent it if we can. Also, trying to help keep him healthy as him getting sick lowers his threshold to have seizures even more and causes him to have more grand mals. Our experience this last week from being sick even more so proves this reality.
It is why while other kids who are his age are able to go down the large water slide, he has to play in the kiddie pool with the younger kids. Or why while his friends want him to play and run around outside, he is inside playing with toys or resting. It is why at church he sits with his mom and dad and/or older brother instead of going to youth Bible group. Yes I am being specific here about the situations we face. Providing our story is something God has put on our hearts a while back and that is why I try to keep this blog current with updates and such.
I also do it to help others in our shoes to know that they are not alone, and that Jon and I see you and your struggles. We know how it feels, how most days are heartbreaking, and how the weight of your decisions and life are pulling you down. But there is something to hold on to that God tells us. James 1:17 (NIV): “Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.” This verse emphasizes that every child, regardless of their differences, is a gift from God – a gift that may seem overwhelming at times to take care of, but that you, as the mom or dad, are fighting to make sure is protected and grows to live out the purpose God provided them to do. A gift that – while overwhelming and making you feel like you are left out – is actually providing you with a greater appreciation for life, a stronger relationship and reliance on God, and a resilience that most people will never understand. But it takes work. It takes finding a community because you CANNOT do it alone, even if you are that window of life, doing it alone will burn you out so quickly. God reminds us that we are to share our burdens in Galatians 6:2 (NIV): “Carry each other’s burdens, and in this way you will fulfill the law of Christ.”
So I close with this. If you don’t have a special needs child, take the time to understand the families that do. While it may be easy to just assume that the parents of that child are doing all right because on the surface they are figuring it all out on their own, they need your help. They need the help of a fellow brother or sister in Christ to come alongside and help them. Not just to pray, but to help them with what they are carrying so they too are able to work on their relationship and growth with God, and to do so with their children/family.
What’s next? Well, for Jameson, we have an FMRI (functional MRI) on September 19th for doctors to be able to know and understand what functions are still being controlled by the area on the left side of the brain where the tumor/seizure activity are. Then at the end of the month, we see the, Neurologist, Oncologist and Neurosurgeon to understand what options we have, and if surgery is an option – since if it is, he would be able to have the abnormal cells removed and possibly live a seizure-free life. It won’t be a normal life, but the hope is that it will be better than what he is restricted to now.
Thank you for the continued prayers and support. This journey we are on is heavy, but Jon and I live by God’s grace, and know that our children are the blessings God will help us to take care of.
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 Josh & 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.
