Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Today seems anything but hopeful. It is the day the 45th President will be sworn in to the United States. For many in the disabilities and medically fragile community, we are scared. We are scared that the services we have fought so hard for will be stripped from our children. We are worried that the tolerance that was created under President Obama will be obliterated and harmful words we worked hard to destroy will return. As a parent, I worry about what will happen to education if we approve his cabinet pick Betsy DeVos. I worry about how laws will be enforced under an Attorney General that has referred to children with disabilities as an annoyance and disturbance in the classroom. There is a lot that keeps me up at night. Yet, today I have decided I am going to be hopeful.

My son has several incurable diseases and developmental delays. He is a child that has beat the odds, and continues to surpass all expectations set before him. We were told he would never be Einstein, may never speak, have learning disabilities, may never work, may never contribute to society, and may die at a young age. We don’t know a lot about this future, and it’s made me realize we don’t know a lot about the future in general. Most of us are worried about things we cannot control. I am up at night worried about what could happen to health care without knowing what will actually be.  There are times I’m shaking thinking about what could happen in our legal system to the rights of children and adults with disabilities, but I don’t know actually what will happen. In our house we call this kind of worry “Paying interest on a bill that is not due”.

Today I am taking back my control in the situation. I am no longer going to pay interest on what is not due. There is no way of knowing what is going to happen, and speculation only fuels anxiety and fear. I have enough anxiety to fill up silos, grain elevators and probably enough to fill an entire cargo ship. Listen, I’m not letting the media, social media or my friends hype me up about this today. I am the one person that can control my reaction, my choices and my outcome. I am also one person that can create change in my community. I am putting my energy in to my Faith.

Today I am going to be the best mom I can be. I am going to continue to instill the values that I believe will make my child a loving and kind individual. He will be taught that all people are deserving of love, that loving someone has no gender or sex, and that all humans regardless of race or ethnicity deserve to be loved and respected. We are Christians first in this household, and we are citizens of this world second. We will continue to model our love for Christ by serving others, being humble in our lives, giving what we can to whoever we can, showing grace to our enemies, and loving our neighbors as we would love ourselves. Our model for how to be in this world is not the president, our model is our Lord and Savior.

Jesus would not care today about who is president. Jesus hated politics and came to the world to show humans how politics and religion were destroying us. He modeled love, grace, humility, patience, kindness and he sacrificed his life for all of us. If more of us were a little bit more like Jesus, and less like what we see in the media every day – we would all be happier. I can not control who our president will be. I don’t believe Jesus or any God answered any prayers by making Trump president. What we can do as Christians and as loving humans, is to love one another, be kind to one another, and find a way to not get sucked in to negative messages we see every day.

I’m going to remind my son every day that Jesus loves him, I love him, and that he is a perfect master piece. I am going to teach him to love others and respect others. He will learn that he is not defined by his disabilities, but they are simply a part of his fabric. I can control the messages he hears, I can instill the values in him that are important to me, and most importantly I can model what I want him to see. Our family will continue to serve our local community, we will continue to find ways help those in need, we will continue to help our neighbors, we will continue to love our enemies, and we will continue to try to exercise grace and mercy each and every day. It is not up to a President to define how I feel about myself or how my child feels about himself. We will lean in to our faith, and pray that things will work out for the greater good. We can’t give one man so much power and so much authority in our lives. The only man that has that kind of power in my life is Jesus, and I promise you he’s teaching my son the most valuable lessons in life. He loves us so much, and no matter who is president and what happens he will always be here. Today is only temporary. A flicker in our history. We will go on. Jesus will continue to be here when the dust settles.

Psalm 16:8  I know the Lord is always with me.  I will not be shaken, for he is right beside me.





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