In the desert.

I feel as though I am in a desert—stumbling and dehydrated, frantically searching for water. Wondering how many more days or hours I can survive. Wishing I would just break or give up, and yet somehow I find the strength to keep going. I often use the analogy of a storm, but that doesn’t feel adequate anymore. It doesn’t do our circumstances justice. I am being suffocated by the heat, dying for a drink to help quench the exhaustion. When will I find my oasis?

Do I need to keep knocking down doors or just be still? I am angry. Angry that I am leading our family, when it should be my husband, who is standing right beside me. Angry that a breakthrough hasn’t come yet. Angry that our house is no longer a ‘safe’ place because the air is—metaphorically speaking—toxic. It is pins and needles, and emotions are on high alert. Last week I dropped Brock off at his parents house to spend a couple of nights because the kids needed to catch their breath, and truthfully, so did I. I have three little kids who are overwhelmed with the presence of their father at home. One child wishes daddy could just call them by the right name, while the other longs for daddy to just speak nicer to them. They talk back to Brock and he gets frustrated and tells me to punish them … they are losing respect for their father and it breaks my heart to watch.

Brock is starting to grasp that something is wrong with him, but doesn’t know what or why. His mind feeds him a lot of different stories that he believes to be factual … for example: “where did everyone go? there were a bunch of people here in the house just a little big ago, where are they?”. I left the keys in the car ONE time and Brock unattended for ten minutes… never again. Thankfully, he just moved my car to a different parking spot and all was well, but he informed me that he made a quick trip to Target. Technically, Brock is able to drive (it is a past memory), but the issue is where he would end up. He needs constant supervision and gets overwhelmed easily. This is exhausting to navigate, and I find myself angry at him. When will we wake up from this nightmare?

As far as next steps, I am grateful to have them, but overwhelmed at the thought of them. The plain and simple fact is that there is no ‘right' next step, no one has the ‘cure’ for Brock. I am shooting in the dark; waiting for the clouds to part and God’s voice to boom down… but it just isn’t happening. Last week (Jan 10th ) was full of appointments and researching options.

This is where we are at:

Brock’s heart rate has improved since he has been home and more active, however his resting heart rate is still on the high side. We had an appointment with the cardiologist who believes there is nothing major going on, but would like Brock to wear a heart monitor for a couple of days next week just to be sure. Brock recently had blood work done, and the results showed that his triglycerides are through the roof. He needs to be on a low sugar, low carb diet to try and lower his levels and prevent diabetes. He does not have the feeling of being full after he eats, and loves sweets which makes it all the more difficult to manage.

A praise: the doctor in Australia finally got back to us and would love to take on Brock as a patient. It would be one week of TMS therapy and targeted rehab. He has worked with patients similar to Brock, just not quite to his severity. The doctor is highly trained when it comes to brain things and believes that improvement can be made… whether that be 20% or 50% better is a mystery. Getting to Australia also poses its own set of challenges due to current travel restrictions. Not to mention my personal fear of flying. I need to be medicated just to fly to Florida, nevertheless around the world to Australia. I have a couple of other options on the table, but sadly there is no one right answer. I was informed again that it is unlikely that Brock will ever be 100% again. I am angry that I can’t process these options with my husband, and angry that there is no guarantee. Where are you God? I am stumbling in the dark, give me a glimmer of hope. If there is one thing I have found to be a guarantee in this life, it is that my angry feelings towards our circumstances and even at God are not something I have to be ashamed of. God invites it, feelings are a gift. Feelings can’t lead but they are a great companion. A relationship with God is built on honest feelings and communication, a religion is built on silenced submission.

I share my heart in request for your prayerful support. Light the path Lord, and give me faith to take a step. Your prayers for us are a priceless jewel. Thanks again for constantly surrounding my little family, it humbles me to know that people I never met are rallying around us.