A Story
Everyone has a story these days. I have a story. My life has been full of stories. Great stories. Stories filled with humor, stories of dismay, one in a million kind of stories. To some, the story of my kids and their genetic disease is sad and sometimes to me it is sad. There are times when the sadness of their story becomes more than a fleeting feeling but a rhythm that contracts each moment and provokes the tears I want so much to hide. My half stitched heart breaks apart and I am left in a moment that fogs any view of the future. Fear is gripping, paralyzing and suffocating.
I have been thinking a lot about my life. It's hard. I have chosen not to give too many people access to my 'real' hard life, the parts of my life that hurt. I've learned that people become overwhelmed when they hear my stories and the truth is, no one wants to hear that your struggling, that life is somehow a little more restless than normal. Living with three children who have a chronic illness brings a lot of chaos, long days, sleepless nights, empty bank accounts, rocky roads and broken relationships. To save us all an awkward moment, I have glazed my life with a generous coating of sugared sweetness to protect the 'innocent' from having to search for words when I give them an honest answer for their cordial question "How are you? How are the kids?" Just this week, I met with a leader of my church who asked how things were going for my family. I said, "Well, we are struggling, it's tough right now." His reply, "Good, that's good..." then carried on with his most important business, never hearing the depth of those words. Obviously he didn't feel awkward but it's a strange feeling to be screaming on the inside, trying to convey that scream on the outside and it falls upon deaf ears. 'If you don't want to know, if you can't hear what I'm saying, don't ask." is what I feel like saying. In all fairness, I will probably continue to give my standard, safe answer..."FINE, We are doing fine!" I've never been a master communicator but I love to write. I don't have a significant other, someone to share the load with at the end of the day but I do have my journal and boy, does it get an earful at times.
So, in addition to my other blogs, this is one where I will share the good the bad and the ugly of living with Shwachman Diamond Syndrome. A progressive disease that has wreaked havoc on the lives of my children yet woven in this tapestry of chaos are the most beautiful threads of miracles and blessings. Without the holiness and the pain, our lives would not be as rich as they are. It is been a journey with God and it's not over yet!
I have been thinking a lot about my life. It's hard. I have chosen not to give too many people access to my 'real' hard life, the parts of my life that hurt. I've learned that people become overwhelmed when they hear my stories and the truth is, no one wants to hear that your struggling, that life is somehow a little more restless than normal. Living with three children who have a chronic illness brings a lot of chaos, long days, sleepless nights, empty bank accounts, rocky roads and broken relationships. To save us all an awkward moment, I have glazed my life with a generous coating of sugared sweetness to protect the 'innocent' from having to search for words when I give them an honest answer for their cordial question "How are you? How are the kids?" Just this week, I met with a leader of my church who asked how things were going for my family. I said, "Well, we are struggling, it's tough right now." His reply, "Good, that's good..." then carried on with his most important business, never hearing the depth of those words. Obviously he didn't feel awkward but it's a strange feeling to be screaming on the inside, trying to convey that scream on the outside and it falls upon deaf ears. 'If you don't want to know, if you can't hear what I'm saying, don't ask." is what I feel like saying. In all fairness, I will probably continue to give my standard, safe answer..."FINE, We are doing fine!" I've never been a master communicator but I love to write. I don't have a significant other, someone to share the load with at the end of the day but I do have my journal and boy, does it get an earful at times.
So, in addition to my other blogs, this is one where I will share the good the bad and the ugly of living with Shwachman Diamond Syndrome. A progressive disease that has wreaked havoc on the lives of my children yet woven in this tapestry of chaos are the most beautiful threads of miracles and blessings. Without the holiness and the pain, our lives would not be as rich as they are. It is been a journey with God and it's not over yet!
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