Blog · April 26, 2018

4 Things I Worry About as an EB Parent

Worry seems to be a mantra for EB moms. We worry. Our heart sinks with every new passing. Myself, I try to cherish every day and not think about the future, it is unknown after all. Thinking positive is hard, but I do try. I keep telling myself: Nicky will make it, Nicky will make it… he will live to see a treatment that will improve his life drastically.

It may be false hope, but the truth is, my heart needs it. 

Let’s be honest, there’s no handbook for raising a child with an incurable illness. We just have to muddle through, day by day, hour by hour. These are just a few of the major worries that cripple my spirit at times…

1. What if I get hurt and cannot take care of my child? What if he outlives me? 

It could happen at any time. Yes, I try to take care of myself physically, I try to eat well and exercise, but accidents happen. This is actually a lesser issue now that it used to be. In the past decade Nicky’s dad has stepped up considerably. He could definitely take care of him if something was to happen to me. But then… what if something happens to him also? Where would Nicky go? Who would take care of him? It boggles the mind.

2. Are we using too many medications? Are we using the right medications?

Medications are tricky. Some side effects are deadly. Combining medications is a risk. I’ve been doing research on proper medications for Nicky for what seems like forever. If Nicky is on the medications that he is right now, it’s because I was the one that brought the issue up with the various Doctors in an effort to relieve awful symptoms… such as the itching, the constipation, the pain, the acid reflux and more. I’ve asked other parents what they use, I request information, I google stuff to death. I try to have only one Dr in charge of every medication he has so we do not have possible counteractions. I also try to have an open line of communication with the pharmacist. But… is it enough?

3. What if we lose your health insurance?

This has been a big worry in Nicky’s life. While he’s never been without insurance, anytime we had to change health insurance it has not been an easy nor comfortable thing to go through and it has been something that caused countless sleepless nights. More often than not, changes in insurance come with a change in doctors and covered services. We went from all bandages being covered to none, and viceversa. This is a nightmare for any family of a special needs child. How do you explain the years of a complicated medical history into a quick conversation which gives an accurate picture of all the medical issues to a new Doctor?

Losing insurance altogether because of our losing the ability to afford it would literally kill my son. Nicky’s health needs do not end after one appointment or one procedure. There will always be another appointment. There will always be another test, another scan, another surgery. His health needs to be monitored constantly.

It should not be left unsaid that this is only a “US” problem. In other words, I only have this problem because I live in the United States. I would not have had 2 bankruptcies due to the medical bills that the insurance refused to cover had I lived in any other “first world” countries. Not in Europe, not in Australia, not in Canada. Not even in Cuba! Having grown up in Italy, I grew up with the mindset that Healthcare is a human right, not a privilege. To me, health care is as inalienable as food and shelter. “Life, liberty, and the pursuit of happiness” are impossible to achieve without maintenance of health. Simply granting “access” to everyone means nothing, because access doesn’t necessarily mean that it can be afforded. 

4. What if state funding is cut?

This is as stressful as losing or changing health insurance. There are programs available that are funded by the state that help special need families quite a bit, they sure help us.  Here in California there are programs that help parents take care of their children (IHSS) and programs that help cover what the insurance does not (CCS). CCS, in fact, covered bandages when the insurances refused to. The problem is that rules, availability and eligibility guidelines are constantly changing. It does not help that the general population wants to cut spending on these programs because they assume that belonging on these programs or others are a result of making poor choices. The truth is that the majority of time, things happen that we have no control over. It could be an accident, a catastrophic illness, loss of employment, becoming the primary caregiver, etc. the list is endless. It’s a safety net. But many don’t care. They allow rules to get tougher, they allow eligibility to become a labyrinth, they allow people to be treated like criminals just to get help. I’ve been there, I am there, that’s how I know.

Love & Light,