Never Give Up

I found this quote the other day and it really resonated with me. It takes a lot of strength to take the jabs and punches of life and to keep going. My situation with Jameson is extreme but not unique. Everyone has something they're going through that can feel like it would just be easier to give up. The true strength within us all comes from what we do when life has knocked us down to our knees.

Little man has been home from the epilepsy unity at the hospital for about a week. He has not had a tonic - clonic seizure since the Saturday before we left. (Thank you God) We had a lot of anticipation for our trip to MN, and while I'll admit that we weren't completely happy with the answers we got, I also took on a new perspective. Jameson is a complex little boy and his medical issues are not black and white. He is the epitome of gray zones. He lives in a world of rare cases and the small percentage of patients that don't respond to treatments how they should. He has a severe and complicated form of epilepsy that is difficult to figure out or medicate. The best we all can do is put our faith in his team of doctors and let them guide us in this journey.

Seizures are terrifying, I won't lie. No one can ever get used to watching their child have a seizure and stop breathing....but you can learn to help them in whatever way you can. I have no control over Jameson's brain activity going haywire and into a seizure on a Saturday afternoon, but I can put him on his side and give him rescue medication so that the seizure stops. That is something I can control. And the rest will get easier with time. Just like when Jameson was a 7 lb, 5 week old little peanut and his feeding tube was surgically put into his stomach. I didn't know what a feeding tube was, let alone how I could handle taking care of it. Now, 2 years later, tube feedings are second nature. Same goes for his vesicostomy. When they told me he would need a hole in his bladder that goes straight through the skin and leaks out his abdomen, I cried. How could I do this? This isn't right and it's not fair. But like everything else, it becomes a part of life and no big deal. Seizures will be the next hurdle, and they too will become a part of life and we'll take it as it comes. I have faith that there is a plan for it all.

Thank you everyone for your continued prayers for Jameson and our whole family. While some days can be harder than others, we are always so grateful and proud to have such amazing friends and family that love and support little man in his journey. What a journey it is! :-)