The Tough Question

Has having two children with special needs changed your political and/or religious views? If so, how have they changed?

Religion:

My faith and religious views are not something that I generally share with my Internet audience – not on Jack’s blog and not on the Tracheostomy.com message board (where I have been an active member for over 6 years). The reason is not that I’m embarrassed or ashamed of my faith, it’s just that I don’t want people to read my words and follow my story – or not – because of my religious beliefs. I follow a lot of blogs and websites where the writers are very open and passionate about their faith and I admire those people, but it’s just not my platform.  However, because I was asked, I’ll share my thoughts.

To start, I’ll share a little of my religious background. I was raised Catholic and attended Catholic grade school and high school. I was married in the Catholic church and my children have all been baptized Catholic. I came to the table with a strong faith. Has my faith changed because of the circumstances of my life? I don’t think my faith has changed, I still believe in God. What has changed is my relationship with God. When Jack was on the vent all those months in the PICU, every time they’d extubate him, I’d head down to the hospital chapel where I’d spend hours saying the rosary and begging God, Mary (the mother of God) and anyone else “up there” who might be listening, to please let Jack breathe on his own without the vent. I spent many years praying that things would go a certain way for Jack. Despite many years of fervent praying, my prayers were not answered. I’ve seen many parents who have a much stronger faith than I, and who were much more outspoken in their pleas for God’s healing of their children, not have their prayers answered either. In fact, for many of these parents, their children died. Do I doubt the existence of God because I’ve seen so many prayers go unanswered? No. Nor do I believe that unanswered prayers are the result of not praying hard enough or not having a strong enough faith. I don’t believe God is sitting somewhere picking and choosing whose prayers He will answer and whose He will not. What I do believe is . . . Que Sera, Sera - Whatever Will Be, Will Be . . . and all the prayer in the world won’t change the way things are destined to be. I no longer pray for specific outcomes. Instead, I now pray for the strength and grace to get through the day and for peace with the life I’ve been given. I absolutely feel the presence of God in my life – a tangible presence that drives me to be who I am, and to do what I do. I don’t believe for a second that the words I write, the projects I take on, my ability to advocate for Jack, or any of the things I do that (hopefully) make a difference in this world, I do alone. I believe that everything I do, I do by the hand of God.

I am a much more spiritual person today than I was before I had Jack. I am more reflective and receptive. I try to be more open to listen for God’s direction and be less insistent that things go my way. My religious views haven't changed, I just think that I now have a better understanding of the “deal”. I've learned that bad things in life are not a punishment, but an opportunity. And at the end of my days ………. I’d just better have a reserved spot in the front of the line at the pearly gates!

Politics:

To be honest, I’m not a very political person and I’m not very passionate about political issues. My being the parent of children with special needs has made me passionate about a lot of things, but politics is not one of them. However, I will say that being the parent of children with special needs – more specifically – a child with significant medical issues, has changed my political views some. I grew up in a conservative household. I was raised with a “survival of the fittest” and “every man for himself” type of mentality. Empathy and compassion for those less fortunate were not attributes we were encouraged to develop. I was raised with the stereotypical belief that people on public assistance were lazy and uneducated. Well, guess what? I get public assistance and I’m not lazy or uneducated. I am the parent of a child whose medical condition results in costs of no less than $12,000 per month (nursing and equipment costs). I certainly can’t pay those costs out of my monthly salary. Private insurance doesn’t pick up the bulk of those costs. Medicaid – i.e. public assistance – picks up the tab for the majority of Jack’s monthly costs (primarily, the nursing costs). I know many educated, professional and hard-working parents out there who would be living on the street – or their child would be living in an institution – if it weren’t for public assistance. I now have a better understanding of who relies on public assistance and the importance of public programs. I’ve learned that anyone who thumbs his nose at taxpayer supported programs for those who are disabled or disadvantaged is very naive. Because, trust me … it could be you, or someone you love – that, in the blink of an eye, will find yourself relying on public assistance so that you can keep your job, keep your house and keep some semblance of the quality of life you had before the “event” that turned your world upside down. It happens every minute of every day.

So, how have my political views changed. Well, I don’t consider myself a liberal. However, I’ve definitely moved closer to the middle. I am not so quick to say “no” to government programs that help out people who need help. I’d like to believe that I go to the voting booth with much more empathy and compassion and with an understanding that it’s not all about me.