It's 2:38AM on Christmas Eve. Hawaii time. I can't sleep. I have been tossing and turning all night long. I need to get stuff out of my head, or I may go insane... Which sadly is nothing new. But, here we go anyway.... I don't sleep much anymore. It's not this time change. I love Hawaii time. It feels as if you have more time in the day to just soak in the fabulous noises of the ocean and smell the incredible flowers that bloom year round.
It doesn't feel like Christmas Eve. At all. I feel like I am stuck in the middle of summer and this whole year has been one crazy blur and believe me, I don't want to go back in time to this year. This Hawaii trip has been wonderful and in a lot of ways, much needed. We have seen so much and done some incredible things. I'm cherishing everyday I have. There is just one problem. Brandon is sick. Very sick and no one knows why or how to deal with it. I think we were hoping the disease wouldn't follow us here, but it has. His disease is a long story that one day I will try to go into detail about for my blogs sake, but I can't wrap my head around that right now. Eosinophilic gastroenteritis. It's an ugly auto immune disease that no one, I mean NO ONE knows what to do with. They can diagnose it, but that's about it. Basically, after a full year of various treatments he is getting worse, not better. Like with any other auto immune disease, you don't always see the illness on the outside. Looking at the pictures I have been taking, all looks well and at some levels, it is. But things aren't always as they seem. This disease has taken a toll. A heavy horrible toll on our family and my sweet Brandon. Fighting, crying, anxiety, stress, tension headaches, more fighting... And that's just in one day. We all fight, all the time. If we make it longer than an hour, that's a small victory. We have to be doing something constructive to keep our minds focused from the fights. You can cut the tension with a butter knife. We have short fuses and will attack even when there is nothing to attack. It's my fault. I am the worst. Brandon is patient and the kids are kids. I am the dragon that shows its ugly head and goes crazy on a daily basis. I leave a trail of anxiety and darkness. I pray daily, well, hourly to find the calm and peace my heart aches for, but that prayer is rarely answered. Prayer has become an obstacle that seems to set us back instead of move us forward. I know deep down that's not the case, but it feels like it is. My prayers aren't the same anymore. There is too much going on in my head and I can't think clearly when I pray, so I usually give up and hope Heavenly Father will just hear my heart. I get mad at him a lot, so I'm sure He has walked away from me because I feel alone most of the time. I have never felt so alone. Not just alone from God, but with the world. No one understands what we are going through, so how could anyone understand? There are less than 50 documented cases of this disease in the world, so we are basically the guinea pigs to the Dr.s. B has become best friends in real life with his gastro Doc. He is a great guy, but even he says he doesn't know what he is doing most of the time.
We were hoping that this Hawaii trip would help alleviate the tension on all of us, especially for the kids. Truthfully, I think we were wishing we could run from our problems for a week and they wouldn't follow us. But, they have. Brandon is weak. He is eating, which is good. But, his speech is slurred and he has to nap frequently or he won't make through the day. He moves slow. Very slow. It feels as if he is 80. There are parts of me that resent him and there are parts that love him unconditionally and want to keep fighting to get him better. I need my Brandon back. Our marriage is crumbling and I don't know how much more his body or my heart can take. We get back next Monday, and he goes straight into surgery for who knows what. I don't ask anymore because they (the doctors) just talk in circles and use words like "experimental drugs and surgeries." Maybe that's why I can't focus. Because when we get back home, we go straight back to reality. And if I'm being honest, I don't like our reality right now. At all.
Don't get me wrong. We have had some amazing blessings throughout all of this ordeal. Brandon has been able to work and it's been a good year financially. I'm so grateful for that. We have had successes in other ways, But this damn disease always takes our family down into the depths of darkness and I don't how to pull us all out.
Christmas is my favorite time of year. The music, decorations, family, friends. It's snowing at home and I am missing it. I wish I was having a white Christmas. Snow does my soul good and I need all the good in there that I can get. I feel weak physically and mentally. But, I'm the weakest spiritually. I believe in God, but I don't trust him right now. A years worth of prayers and pleading for answers, just to never get them will do that to you. I know He doesn't trust me either. Problem is, I'm not quite certain how to fix that. So I lay awake at night and toss and turn. I search social media and blogs for inspiration, but all my heart sees is families who are happy and prospering or families that are struggling in different ways begging for help. Perception can be a tool our brain uses to make us feel bad about ourselves. Our family is slowly drowning and I can't reach the surface to take a deep breath and carry everyone. Carrying 5 people all the time can be exhausting and daunting. So, I am taking this one day at a time. Sometimes one minute at a time. I am not the person I thought I was and I am not the person I used to be. I don't always like who I am right now. I have questioned my faith. I have questioned God. I have questioned religion. That seems to happen when things don't go the way we want. It's easier to blame God and walk away rather than pick up what he has given us and have the faith and obedience it takes to keep following Him.
I know we will get through this. I don't know how it will all play out, but I hope everyday it will get better. It has too or I may never come back up from this darkness that surrounds me. The light of Christmas time can usually pull me out of a darkness that I am in, but this year I can't find the light. Hawaii isn't very festive. There are not a lot of lights anywhere and I have yet to see a nativity. I have seen 4 Christmas trees in total and they all have had blue lights on them. I have never understood blue lights at Christmas.
Today, my prayer will be to find the light of Christ here in Hawaii on this wonderful Christmas Eve. I pray we can make it a day without fighting or worrying what the future might hold. All I want for Christmas is health for my husband m, peace in my heart and in the hearts of my children. They know way too much about stress and I see daily the toll it takes on their sweet hearts. I want to see my kids faces light up when they see something magical this Christmas season. I want to feel love in my home. Santa is coming to our home while we are gone. We will return to celebrate our Christmas our way. Then reality will set in and we will keep moving forward. I just hope this Christmas, our family can find the light we so desperately need. Merry Christmas to all. May you all have peace in your homes and in your hearts. And for the love....2016, please be good to us!
What they don't know, is Christmas is waiting for them at home under our tree! 
