September is Chiari Awareness Month. The thing is, even though this is the month to educate others about Chiari, our fam tries to do this all the time. I think when you live with something the average person has never heard of, you get good at explaining it. I love the people who truly want to learn. They listen and reassure you that they heard what you were trying to say. It reminds me to be mindful of where others are. We all have crosses to bear. For our fam it is Chiari, EDS, and ongoing medical treatments and bills. But I try to never take lightly what others may be going through. I want myself and my kiddos to stop and listen to where others are. To find out how we can walk with them on their journey. We can be a friend to someone, sharing you heart and letting them share theirs. I think this is how change is made! You become passionate about things you are close to.
Recently I have heard Chiari compared to many things. In our attempt to spread awareness, sometimes we drag other illnesses down. No matter if you have Chiari, Cancer, Parkinson's, CF, or a host of other things, your story MATTERS! I know it can be frustrating to constantly be misdiagnosed, or told your illness does not exist. It can be heart wrenching to watch your child suffer day in and day out. It can be exhausting explaining to schools, docs, and friends what Chiari is. But stop for a moment and think before comparing it to another serious illness. Would we as Chiarians want to hear, "Well your headaches are really just a bad migraine." or "You stumble and fall sometimes, oh me too! I am such a klutz!" We know our headaches are not a migraine. We know that balance issues are not because we are clumsy. Our brain is hanging out of our head.
I guess I worry we may lose our compassion. We may think our problems are bigger than someone else's. Is this the right attitude? Will this way of thinking help a fellow human? Where do we draw the line when we start comparing illnesses?
A friend of mine has a darling little girl! This babe was diagnosed with Prader Willi Syndrome when she was tiny. To learn more about Prader Willi click HERE. This mom has embraced her daughter and all her health concerns with an understanding heart. She has educated, advocated, and prayed for her sweet girl. She walks along side other families in this same journey. Her daughter has suffered and will suffer many trials in her life. And yet, she would never say "my daughter suffers more than yours." Her hope and prayer I am sure is the same as mine....please God let both of our babies grow to love and praise you even in the hard times!
A lady I know was diagnosed with Cancer a little over a year ago. I do not know her well but added her to my prayer list. I was so amazed by her beautiful facebook posts. She went through 2 rounds of chemo...she was one very sick lady. I never heard her complain. I never saw a post that asked for this to be over. She fought, she fought hard! And she won! She never gave in to the negative side, and inspired so many with her courage. Ok, so I do compare myself to her... but in a good way! I try so hard to hold myself up to this same standard. I have heard time and time again from doctors, that the worst thing is giving in to the negativity. Climbing the mountain is hard no matter what your mountain looks like. You may not hit the summit....but you can make the climb as positive as possible! And I loved this about her! She made her journey one of smiles, memories, and never giving in!
Whether you are battling Cancer, Chiari, a divorce, lost job, painful past, or just complete sadness, we all have a story. We are all on a journey. None of us is more important, or needs to be heard more. We just all need to be heard. To be understood. To be loved. I am so blessed to have a wonderful support of family, friends, and a wonderful Creator. And even though I will advocate, educate, and teach others about Chiari, I pray that my children and myself never compare our walk to yours. I pray that we can be here to listen, learn, and share for others too!