Learning to ride the roller-coaster
Truth is...I am on a roller-coaster. Come on, you saw that metaphor coming. What do you mean Melissa? Thanks for asking my friend. That metaphor actually started when my little man was born. I was in the hospital for 6 weeks on bed rest before he was born and he had his own stay in the NICU for close to that length of time. When he was in the NICU, a mom who had gone before me in that surreal space gave words to the days that I was enduring. She told me, "I'm praying for you. It's such a roller-coaster in the NICU!" One day your baby is making great strides. Their doctors start to tell you they can go home in a few days. Finally, you may get back to your cave, your space, your nest where nurturing and growth take place. Then, a bump or a u-turn or a flip happens. Your baby's sats drop, a test result comes back inconclusive, body temps drop, that feeding just wasn't a good one and the ng tube has to go back in. You then find yourself waiting for another day, another visit or another round from the doctor that gives you a good report. You may find yourself waiting for the words that you will get to go home and get off that roller-coaster that is the NICU.
For some, for those who later come to understand that they have entered the world of special needs, their roller-coaster continues.
From the very beginning, we knew our guy was unique. His birth was unique. He spent his first year going to more appointments then most go to in a lifetime. We knew he processed the world differently from the beginning. He never liked to be held. He couldn't fall asleep when I was holding him. To be honest, those first several years are marked more by doctors notes then scrapbook pages.
In all of those appointments, we still had hope that things would get better. By better I mean, he would interact with us more. He would get used to the sounds. He wouldn't have to go to the doctor as much. We were told by specialists, he is in a marathon but keep at it; some kids grow out of this; we will just have to wait and see. In my mind, I heard, "The roller-coaster may have an end."When he was diagnosed with autism at 2, there was such a sigh! It was such a relief! I knew there was a community of support. I learned that autism was not a disability but rather a different way of viewing the world. I knew that our lives would adjust and we would figure out this new normal. I thought the roller-coaster was over.
Then, the rare heart diagnosis 2 years ago. Then, the genetic diagnosis. Then, treatment for heart. Then, the hard to treat GI diagnosis. Then, the seizures. Then treatment for GI disorder. Then, treatment for heart diagnosis is not effective. Then no seizures.
Then, it clicked. Thanks to a mom who has walked this road before me in a different arena said, "Let's face it. There is always going to be a next thing. There is always going to be a new way of fighting for health with your Moses." Get used to the roller-coaster missy. You will not get off it. Acceptance, maybe.
So, our next loop is seeking for a better heart treatment. In December of this past year, we were told that his heart treatment isn't working. Medication isn't doing what it needs to do in order to keep him from going into a fatal arrhythmia. So, he needs a defibrillator, a tiny machine placed into his heart to shock him back to life in case his heart stops. The problem with this course of treatment is that these machines are not programmed to our son's rare heart condition. Because of that, he will develop PTSD from being unintentionally shocked. To help reduce the amounts of shocks, he will have to endure subsequent surgeries to alter the message to the machine. This puts us in a new arena of care. We are being asked to make decisions for him that will dramatically alter his quality of life while affecting his quantity of life. Not a place any parent wants to find themselves in. If I make this choice, my child's life will endure less peace. Or if I make this choice, my child's life will be shorter. Who can choose between that, harder or shorter?!
Now before you look at our life with pity, just wait. We have come to understand a small glimpse of what Jesus talked about in losing our life to save it, even though we still try to hold on. Of how God's power percolates in weakness though at times we try to change our weaknesses. Of how beautiful life can be when you are surrounded by a life that is not comfortable, even though we still try to search for rest in broken hammocks. That life is too short to live inauthentically, even though we still bend toward a fear of what other people think. That Jesus is present in the darkest of places, even when they don't change.
So, I wonder. What roller-coaster are you on? What wave are you learning to ride? What if letting go of the idea that the ups and downs will end is actually the best place to land. After all, we are in the age of the already but not yet. God has already started the process of redemption but it is not yet fully realized. What if He put us here, in this time zone, this time of history to be ok with the tension?
Photo credit:
http://amusementrides.org/information-big-roller-coaster/
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https://my.clevelandclinic.org/health/treatments/17165-lead-extraction
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