I asked this question for two reasons. First, I was interested to see if there are similar needs across a variety of families and the health spectrum. Second, I wanted to show what the major concerns are of families who are dealing with chronic medical issues. These are the things we are forced to think about each and every day.
It’s also quite interesting how the list breaks down in order by relative cost and the amount of time it takes to change. A cure is always best case. I would give everything I have to take Livy’s seizures away forever. However, cures are usually incredibly expensive and can take decades if not centuries to discover. As technology advances, that timeline shrinks. But for a family struggling with a disease or disorder, one day without a cure is too long.
While health care is expensive, it is an area where we can make great progress. I will not even get into this politically charged area and I ask that if you want to comment, please be respectful. We all have our opinions and are entitled to them. It is not until you walk in the footsteps of another that you understand why they feel the way they do, from where they are coming, and how they got to that point. What I will say is that navigating the system when dealing with chronic health issues is incredibly difficult, time consuming, and frustrating. In one case, it took us nearly two years to resolve a dispute. The only reason we came to closure was due to persistence. I’ll discuss this topic in another post.
The final area is acceptance and support. Often, support comes after acceptance. Support can cover many different topics. At the root of it is having a system in place that families can turn to when in need of emotional or physical assistance. Monetary support is also an issue but if health care was resolved, the money issue would be a smaller consideration. Typically, support starts with family, friends, and other families with similar circumstances. Family members and friends often find it difficult to understand a diagnosis and how it changes everything. Families are torn apart and friendships severed due to lack of acceptance and understanding. Parents become different people, on so many levels, when faced with our children’s health challenges. Perspectives are different as are the areas of life on which we focus.
In some ways, we become stronger individuals able to handle and solve really hard problems. But in other ways, we are more emotionally susceptible, fragile, and aware. We thirst for those willing to be a part of our new journeys and for those who have traveled the road before us. We go through life craving acceptance and when adding a disability into the mix, our yearning for approval is magnified. It’s easy to say, “I don’t care what other people think.” But when you’re in public and someone is staring at your child in less than a positive light, it hurts. Hence the need for people who are tolerant and accepting. This piece does not cost a penny to rectify aside from perhaps awareness campaigns. It comes down to basic human decency, what we are taught and believe as a society, and not judging others because they are different.
I hope that we are able to focus on solving these big issues. Working together, we can find cures, care for our children, and build acceptance. Committed parents pursuing common goals are able to make tremendous strides. We are each responsible for moving the conversation forward. I guarantee you, it will not be handed to us. Our children’s lives are literally at stake as is the health and well being of our families. There’s nothing more important than that!