Tuesday, November 13, 2018
There are situations in our life that we will not understand and not everything will have an answer. Take Blount's Disease for example. For those who have kiddos newly diagnosed with this rare condition you don't know how to react. You aren't getting the answers you need from Doctor's, you may feel alone, overwhelmed, and at some point blame yourself on your child having this condition. You try and keep a smile on your face and be the strong one of the household because at the end of the day you know your child depends on you. Sometimes its easier to hold on to things rather than open up and deal with or talk about. As a rare disease parent, I am here to tell you it is ok not to be ok.
Remember it's ok to not understand. Blounts Disease lacks in research and currently has no supporting organization for this diagnosis. Don't spend countless hours googling this condition as I was that parent 10 years ago when my girl was diagnosed; and in all honestly it just made me more overwhelmed to see all the research I came across was similar information or old research. Remember its ok to get frustrated. Its ok not to know all the answers. Google is not a Doctor and this type of behavior can affect your mental health. Parenting is not easy and especially when your life is changed due to a diagnosis. It takes a lot to be a rare disease parent and not everyone is made to understand your journey. Remember it is ok to get stressed. Stress is one of those things that happens to anyone no matter what. There is no running away from stress. At some point in a persons life they will experience the emotion of feeling stressed. While it is ok to have these feelings, don't allow stress to become who you are as a person. Learn to take time for yourself and space to center yourself before dealing with the next crazy moment that may happen in your life. Learn to breathe and take however many moments you need. Lastly, remember it is ok to cry. There is nothing wrong with crying! Crying does not make you weak as a person. Crying means you are strong. Crying is believed to help release stress hormones or toxins from the body.
Do whatever it is you need to do for you. Everyone may have problems in life, but it is important to know you are not alone. Sharing your feelings can bring a sense of relief. The journey of being a rare disease parent is filled with ups and downs. Not being ok is building you to be a stronger person and not everyone will experience the same feelings you may be experiencing and that is ok. Through the events in our lives good or bad, you own everything about yourself; your voice, your feelings, your actions. Its ok to not be ok.
"There’s no shame in feeling like the world is falling around you, and there’s definitely no shame in asking for help."
-Angela U., Blount's Disease Strong
P.S. It is ok to ask for help or to reach out to vent. We are all in this together!