It's taken me over 24 hours to sit down to write this post. Scratch that. It's taken me over 24 hours to sit down. Goodness.
Yesterday was our meeting with the director of the Brain Balance Center as well as the program director. My mom, being the totally supportive mom and grandma that she is, went with me to give me a second set of ears to hear all the information. Plus, she was getting kind of curious about the center. Ben was PUMPED. His grandma was going to see his school with him.
After he went back with his coach, my mom and I stepped into the program director's office which has a window for us to watch the session without Ben knowing that we're spying on him. The coach put a vibrator on Ben's left ankle since he's right brain weak, and Ben also wore special sunglasses that only allowed him to see with his weaker eye. Just watching him do his activities blew my mind. That would've driven me NUTS, but Ben seemed totally content to do his activities and work with his coach while wearing the special equipment.
Then we made our way to the director's office to discuss the parent binder as well as the nutrition packet. Here's where things started to go downhill. It was in this meeting that the full extent of the parent participation was explained. I kept trying to not look shocked as the director explained that we would be responsible for doing special exercises with Ben at home for 30 minutes twice a day, even on the days that he is at the center. And we're not talking a few sit-ups and jogging in place. Specific eye focal activities. Core strength training. Reflex retraining. None of it easy or coming naturally to Ben. And we are supposed to do these things for an hour every. day. I almost cried.
Ben is incredibly difficult to motivate. He would rather miss out on good things in the future than do what you ask him to do in the moment. My brain immediately skipped ahead to what a nightmare the next six months would be, doing these activities for an hour of every day of my ever-loving life. Six months. Approximately 180 days. What have we done?????
Just when my brain thought it might explode, the director explained the last exercise and began to talk about nutrition. It was just as I expected. No gluten. No dairy. No processed sugar. And limited eggs, soy, and corn. For six months. He'll need supplements. We'll need to keep track of his exercises every day on a chart that must be turned in on Monday each week. The intensity of the room was overwhelming, and the gist of the conversation was that it was on us to make all this happen for Ben.
Even worse, they had recently decided to just email the parent binder rather than provide paper copies for the parents so I had no where to write all the details I was being told. I thought my brain was going to explode. The Brain Balance Center was going to be cleaning up my gray matter from off the ceiling because here's my thing: I have four children. Ben is only one of the sweet souls that have been entrusted to David and me. And I have very little short-term memory right now for details. Trying to remember all the facts and figures that were given to me in the meeting since I had no where to make notes was the straw that broke my sanity. I processed out loud (read: rant) with my mom the whole way home. And then I cried as I told my dad about all the information, all the work, all the details to keep track of that I just don't have it in me to chart. It was just too much.
God has given me David. Of this I am sure. I called him at work and was sobbing uncontrollably. I couldn't imagine how we could do all of this with Ben over the next six months. I couldn't imagine what he would eat. I felt like the meeting had been rushed. Like all my questions hadn't been answered. Like I was just not up to this gargantuan task, but I could not imagine retreating from this opportunity for Ben. David listened, didn't try to fix me or explain it away, and then he cleared his schedule for the evening. He came home, ate dinner with us, built a fire in the fireplace, washed all the dishes, and made sure I had all the time I needed to read the nutrition guide and to make sense of how this might actually work over the next half of a year.
By the time the last log was on the fire and Emily was ready for bed, I had read enough to understand the program and to feel like it was more manageable. I had emailed the director with a couple questions and made a plan with David to split the responsibility for Ben's exercises. (I'll do the morning, and Dave will do the evening.)
By the morning, the director had responded to my questions, and things looked a bit brighter. As I sat in my bed snuggling Emily to sleep, I prayed and begged God for guidance. By the providence of God, Emily's developmental therapist came today for the first time and we talked through the demands and strengths of the Brain Balance Program. Despite talking about how hard it is going to be, she encouraged me in the positive aspects of the program and was supportive as well as realistic. When I called David after lunch, he and I both still felt like this six months is a gift that we needed to give Ben, and we need to give it to him now. Not a year from now. Now.
So this evening we did Ben's exercises. Our date night tonight was a hot trip to Aldi and Meijer to stock up on gluten-free, dairy-free, and egg-free items that we can have on-hand for Ben. And I'm gearing up for the trip to Fort Wayne in the morning (read: going to bed as soon as I publish this).
We are begging God for the strength to see this program through to the end. For wisdom as we seek to balance our time and show our other three beautiful children that they are loved. For Ben's growth and cooperation. For our marriage to remain strong. For our lives to reflect grace even when we are beyond ourselves exhausted.
Several of you have asked how you can help. Would you commit to pray? To daily pray? When we are weak, I know Christ is strongest in us. I'm fervently praying that this journey will strengthen my sons' faith and even encourage Laura to trust Jesus with her life. We are pressed but not crushed, and we will press on toward allowing Ben to live the fullest life possible for him.
And thanks. Your notes and emails are a blessing beyond what I could ever express.