Feb 01, 2017
Article By Pam Hodge
I have cried a million tears and asked why a million times, never to get the answer. At times I have just held on because that is all I could do. I thought at times our family would crumble because of lack of support. I have gone through the stages of grief only to return and work through them again. I have sat and wondered how people come to terms with getting a diagnosis of an incurable rare disease. How do they move on and live their life normally like every day isn’t a battle?
It was as if I was living someone else’s life waiting for mine to return. The world was bustling around me as my life seemed to pause in a crisis. I felt I was in a battlefield picking up the pieces of me that were left after this bomb detonated. Trying to hold it together while actually falling apart most of the time. All the while asking why this is happening to me? Begging God to take this from me.
I have a mast cell disease. Everyone has mast cells, they help fight infections and are the cells involved in allergic reactions. As for everything in life, moderation is the key. My mast cells have gone rogue, fighting everything in their path. My environment, foods I eat and even my own hormones can cause life threatening allergic reactions. For years I have trudged through this battle with my body learning how to navigate the daily crisis. Every day not ever giving up hope that tomorrow will be a better day.
Then a day came that changed everything. My daughter got the same incurable rare disease diagnosis. How could this be? My daughter, my baby, my princess. How could I carry my own fears and hers too? How could I do this to her? It was my fault, I did this. The guilt came fast and grief was right behind with all of it’s many stages.
I carried all of this around for a few months until one night it was as if God spoke to me and said “Don’t you understand now? I prepared you for HER battle. You are well equipped to handle any crisis if it arises.” Peace came over me, because I have my answer:
The only thing worse than having an incurable rare disease, is your child having an incurable rare disease and feeling helpless in what to do or how to treat it. I do not feel helpless, because I have lived this! That is why.
To my daughter, don’t shed too many tears, but when you do use them to clean your eyes to see what and who is important. When you ask why, be patient for your answer and don’t give up on getting it. Work through your grief but don’t get stuck. Never be too strong to ask for help when you need it, and hang on to the friends who help without being asked.
Tie up those boots and straighten that tiara my little princess because the battle has begun. Put your fears aside because you are not alone, there are many in the mast cell community fighting right beside you. I am a NOW “locked and loaded” and ready for this war!
Rare Disease Awareness Day is February 28.
Currently there are no cures for mast cell diseases.
You can care about rare by making a donation here!