February 28th is recognized as Rare Disease Day, an occasion to raise awareness for rare diseases of all types. Learn more about joining together through better care at RareDiseaseDay.org.
Rare Disease Day is a day we never really gave much thought to in our house before. Recently, however, things have been a little turned upside down in our lives because of two new words….
Looks strange. Hard to pronounce at first. To date, there are only about six recorded cases in medical literature. We are in the midst of determining if our child will become the seventh.
The middle of the night seems to be the time that my brain goes into overdrive. My mind is full of unanswerable questions. At least, I have not been able to find the answers I am looking for anywhere. I have spent countless hours scouring the internet for information about children like mine. I have found a few scholarly articles. I am getting pretty good at actually understanding what they say, but I still can’t find answers to my most burning question. “What does this mean for my son?” “How will this play out?”
Not being a person who likes to sit around and wait for things to happen, I decided to start writing a blog about my son, Zack. I do not have any formal training in writing, computers or gastrointestinal issues, but in the middle of the night, with worry creeping in, I decided to take charge and be pro-active. Maybe another mom will be up in the middle of the night searching for information about her child, maybe she’ll find my blog and it will be helpful. It gives me an outlet and a positive way to deal with the uncertainty.
Not knowing for sure what is wrong with our child is hard for our entire family. Zack is not our only child and his condition affects us all. There are days where it feels like all we are doing is treating symptoms and waiting for the next thing to happen. It feels as if we are working hard and not accomplishing anything. This leads to many a frustration.
Personally, there are days where I feel pretty alone. Does anyone understand how hard it is to watch my child hurt? Does anyone else know how hard it is to watch as other children play and go to school and do other normal things that my son is not able to do? When will he be able to have his ileostomy reversed? Will it be successful? Are the doctors missing something? Should we see yet another doctor for a second, third or fourth opinion?
When those days happen, and they do, I try to remember all of the ways I have been blessed. I’m blessed to have a great family, friends and neighbors who check on us regularly and ask how they can help. Even though there is nothing anyone can really do for us, it is nice to be asked. We have doctors and nurses who care deeply for our son and work tirelessly to help us find the best course of action for Zack. I have been blessed to meet two other parents with children who also have rare diseases. Although their conditions are completely different from Zack’s we are able to talk about things that are common to our lives of hospitals and tests and about our fears and hopes for our children.
Instead of letting those fears and doubts and worries take hold, I remember that I am stronger now than I was eight months ago. I have realized that there are many families like mine caring for a child with complex medical issues. Although there might not be many with the exact issues I face, we have many similarities. We are smart, we are tenacious, we can handle intestines, we can give injections, we can measure medicines, clean wounds, and fight for our children with a love we never knew possible.
So this year my family will recognize Rare Disease Day for the first time. Uncertainty surrounds us, but we are ready for whatever this year may bring.
Dawn Penrod is the wife of a newly retired Air Force guy and mom to three boys. Together they traveled the world before making Maryland their home. Dawn can be found at crazymessylove writing about life with a special needs child.