Blog · December 20, 2017

It’s not Political Stuff, it’s Human Being Stuff

Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the GOP until the last minute didn’t have the ability to deduct medical expenses. Maybe, for most people, being able to deduct medical expenses is not an issue whatsoever, but I am glad that pressure from the disability community got them to open their eyes. The fight is not over, as there are other things at stake.

By reducing revenue by at least $1.5 trillion and increasing the deficit, the “Tax Cuts and Jobs Act” increases the pressure to cut Social Security & Medicaid (programs the GOP stated are “next” on their agenda), which are critical to the lives of people with disabilities. Barf.

I don’t normally engage in political discourse, even though I follow it. I have no interest in arguing against this greedy and ego filled president and his party of clowns with his/their followers, but this issue makes me raise my voice because there are indeed fundamental differences in the ways in which we view the world and believe other people should be treated. It’s not political stuff, it’s human being stuff. I don’t know what’s changed in America to make it so polarized, but I do know I’m done trying to debate with these hoards of selfish, cruel people to look beyond themselves.

Perhaps it was always like this. Perhaps the emergence of social media has just made crystal clear people’s tendency of being blind to the plight of others and exposed their lack of compassion & empathy. It’s incredible to see people spring to the defense of policies that will without a doubt make their lives more difficult. This is why I’ve decided long ago to stop debating someone into caring about what happens to their fellow human beings.  Our disagreements are not merely political, but a fundamental divide on what it means to live in a society where we’re all in this together, how to be a good person, and why any of that matters. It’s very sad, when in the richest country in America, the misfortune of having a child with special needs results in a personal bankruptcy. But that is my life, my truth. Do these people care? Clearly they don’t.

So, for those that wonder why Nicky and I are willing to expose our plight in broad daylight for everyone to see is because we want to accomplish what a debate cannot. To make people care. Not just for us, but for everyone going through a tough time in general. Everyone has something. Everyone is struggling. Our society is a visual one. Words mean little. Pictures are worth a thousand words. Our struggles are not unique. I am certainly not the only mom that “has” to stay home. Yes, staying at home is something I’m proud and happy to do, but it’s also medically necessary. There is no cure for my son’s condition, there are only interventions and treatments that can be done for him. As much as I wish science would hurry up and find ways to for my son’s skin to finally produce Collagen Type 7, no such miracle yet exists. It never gets easier, because when you have a rare disease, even just getting routine care often requires Herculean effort.

For example, I am one of many parents who cannot take their child to a local Doctor. His disorder is just too rare. Once or twice a month we have to make the 90 minute drive (without traffic) to the children’s hospital in the city or the 6 hour drive to Stanford (albeit less often). When we go to Stanford we will watch the sun rise as we drive, make our regular half-way stop at the ice-cream place, and get settled into our hotel, only to do the same thing again the next day after our appointment. On our 90 minute drive to CHLA we brave the city’s rush-hour traffic, find a parking spot on the bottom level of the underground parking garage, get the wheelchair out and finally find our way through the halls of the children’s hospital to check my son in for his appointment with one of the specialists or his iron infusion or whatever we may be there to do that particular day.

You see, my social media feed is swimming in all the stories of an EB person who is doing something amazing. Which is cool. I don’t begrudge these people or stories, I am truly happy for them, but it’s hard to feel hopeful and renewed when I know that this will never be our story. Not even close. EB can be so different from one patient to another it’s mind-boggling sometimes. What can be inspirational to one person can be depressing to another. Yet we all struggle, we all suffer. Is it too much to ask that we are not driven to bankruptcy as we care for our children?

I love being my kid’s mom. It sharpens me every single day. We are warrior moms, fighters, and uniquely made. Let’s pray for one another and lift each other up. Who will you reach out to today?

Love & Light, and Merry Christmas!