It's hard, life goes from good to bad and back again in a matter of minutes. Your emotions are on a roller coaster 24/7. You are constantly problem solving, changing and adapting. Just when you think you have things figured out, then it throws you another "curve ball". You guess and debate with yourself all the time.
You are sleep deprived and cranky. Yet you have a "facade", of course you say things are good when they really aren't. Some days you just don't want to explain it all and others, well, it would be just too much for the "average" person to take in. Seriously, there are days you just DO NOT WANT TO KNOW. There are days I wish I didn't know. Days I wish I didn't live with it. That I could just get away for ONE day and forget about it. I can't. That's my reality. It's always there and it will never leave.
Some would say it never takes a vacation. In reality, it never lets ME take a vacation. Not a real one anyway. Never again will I be able to go and relax and just "forget" about life for a couple days. It will always be in the back of my mind. I want others to be knowledgeable about it. I want to educate people, but how can I expect that when it is constantly changing. Constantly making me change.
It has made me learn things about myself I never knew. It has forced me to do things I never thought were possible. It has brought me closer to my faith and made me question it at the same time. Question why us, why now? What is Your purpose? It has helped me learn to trust and lean on others when I need it.
From now on, I will always have to be the "nosy" mom that has to say "no" to a lot of things. I will have to "approve" parents before any fun can be had. They will have know it. They must know what to look for and how to take care of it. Yet, how can I expect others to help me control it, when I know what it takes to control? How can I show them what life is really like with it?
I can't. There just is no way to show them. Sure, they can get a glimpse of it. They can be sympathetic and understanding. To those people, I salute you! Words will never be able to express what that means to me. It takes great courage and effort to even learn a fraction of what I know. It is true what they say, that you will never really understand until you live with it. Until it is there staring you in the face everyday. But then there isn't a person in this world I would wish it on. I wouldn't even wish it on my worst enemy. It breaks my heart every time I hear of another child that is diagnosed with it.
Despite everything, I have HOPE. I have HOPE in technology that will help make life better. I have HOPE in the people that are working so hard to find a cure. I have HOPE that someday my daughter will be able to say that she "USED to have it"
I have to have HOPE because without it, I have nothing.
"Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free"-Addison Road "Hope Now"