While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.
I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.
Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.
Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.
One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know… It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.
So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.
My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.
My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.