Home and Reality

Well guess what? We are back home. It is definitely bittersweet. I love my family, friends, and my dog Marley. The beach is our happy place. Hayden is like a different child at the beach. His eyes focus. He smiles. His monitor stays steady throughout the night. Yes, this is why we have been to the beach 10 times in his precious 13 months. Trust me, if you have never experienced it you will never understand our happiness. If you have experienced a beach trip with us you understand. I cried today as we left the beach. You see summer is drawing to an end. Brent is really busy with work in winter. I know that our beach trips are fixing to start slowing down until spring. We are planning on one last trip with some Best Friends. As far as I know, that will be our last trip for the Winter. Most of you are probably thinking enough is enough. Once again the joy our family has in Florida is something that I can not describe. I cry just thinking about it. I told mom today that Dad will never be able to sell or replace our condo because the memories are SOOO SOOO precious. I can not wait to share some pictures from the trip tomorrow. I will update my blog with some pictures so you can experience our joy. I left in tears today because I know Haydens prognosis is so poor. I fear everytime might be the last time. This trip was extremely emotional. Hayden and I spent a little extra time in the bath tub last night. I do not want it to be the last time. Unfortunately, tomorrow is not promised for Hayden nor myself. Only God knows when our time will be. I do know that our worries disappeared while at the beach. Unfortunately, as we left they are back. We are home. We are back to reality. Worse part is Hayden has had more seizures today then all week combined. Really???? What in the world causes Hayden to do so much better in Florida. Hayden's seizures are on a rise. So please pray that he feels a little sense of Florida in Mississippi. I need my little buddy to have more good days. He is my little side kick. I LOVE good days. I am EMOTIONALLY tired of sad days. I do not HATE anyone but I HATE seizures. They are consuming our life. I am going to start counting down the days until our next Florida trip. Maybe this will help us get through the exhausting days. On the positive side, I have the best mom and grandmom in the world. They came to my home and cleaned for us today. They even hung photos and redecorated. Yes, they are by far the coolest people in the world. They always put Hayden, Brent, and myself first. Thank God for these two adult Earth Angels. Please pray for some peaceful days in Mississippi that have a little touch of Florida. We had the best vacation with awesome moments. Ahh.... I love my precious family. Go away seizures, stop bullying our precious child. We would love to have some awesome weeks. We are still fighting this ASLD battle. We refuse to GIVE up. We are still holding onto HOPE and claiming our MIRACLE. Each day is going to continue to be a special precious memory.