Finding Support in Random Places

One of the many challenges of having a child with special needs is finding families like your own. I was struck by the randomness of this the other day when reading the Facebook feed of the Feeding Tube Awareness group. A parent posted something to the effect of: My child is 3yrs old. He recently had a feeding tube put in and is now being sent to get a iv port implanted into his heart for regular blood infusions every three weeks for the next 10yrs of his life. Are there any other parents that have experienced this? If so, any advice on what to expect.

This is just one example of the random requests that come across this page. This parent obviously has her hands full, and if she is anything like me, she is likely terrified! I know nothing about what she was looking for, so I had nothing to add. To my surprise though, 30 people responded! I was shocked! There were no, "I'm sorry you are experiencing this" posts. The responses came from real people experiencing the exact same thing ranging from dealing with it for just a few months to many years! This mom didn't likely learn that her neighbor was an expert in this area, or someone else in her family had gone through the same thing, but that other people around the country have had the same experience. Just knowing that you are not alone can be empowering in itself.

In our house, we are well aware that there are many others with far more difficult lives than we have. We never set out in search of sympathy. We do, however, frequently set out in search of someone that is experiencing some of the same things that we are. Unfortunately, there is no "awareness group" for people that have had leukemia, contracted a brain infection, acquired an uncontrollable form of epilepsy, needs to wear a helmet all waking hours, has all the skills to eat on her own but can't sustain her life by eating enough orally, etc., etc., etc. So, we tackle that elephant one bite at a time in search of whatever information we can find and whatever connection we can make. One group will have a single person or a small number of people with similarities, and another group will have the same. A lot of time that "support" comes in knowing that others are facing the same struggles. Frequently, others have many of the same difficulties and haven't found any solutions either. But, we have learned that others are out there!

With the HIPPA laws, it is next to impossible to connect to others with similar issues via any medical professionals. The very laws that are set up to protect our privacy also prohibit us from making some valuable connections. There are likely several people in every city that have gone through some of the same experiences, but the only way we would learn that is through some type of awareness group or non-profit organization. I was a "late bloomer" to Facebook as I just didn't see the value in it. At this point in our life, I really enjoy seeing what is going on in the lives of some people that I have known many years, but otherwise wouldn't stay in touch with. But, most of all, I really enjoy the connection to people that I have never met that are traveling down the same rocky road that I am on. I have always been told, "Networking is one of the most valuable things for you." Professionally, maybe this is true. Personally, I have found this to be one of the best tools to help me and others find answers. Who knows, maybe another connection will even come out of this post! That would be yet another random occurrence to add to the list.