Everybody has one.
Last week at She Speaks, I met a wonderful girl, Mandy Anderson, who was young enough to be my daughter and we bonded in a huge way. I think we would have anyway because I have a heart for young adult women, but Mandy and I shared a huge life event that is not always positive.
That thing is Cystic Fibrosis.
My youngest sister was diagnosed with this awful disease at 7 months and it has been the elephant in the room for all of us ever since. Mandy also has the disease and has written a book about it which I ,of course, bought and devoured in one sitting as soon as I got home and had a moment to myself. The book has stirred a hornet’s nest in my mind.
One of the goals I had when I quit teaching was to help Amy, my sister, write her story. That has been two years ago now and we haven’t gotten one word down on paper. It is a hard, hard topic and is going to dredge up lots of hard, hard emotions. For a stuffer like me, that isn’t something I look forward to struggling through.
I have been encouraging Amy to start writing her story-the story of living with a life-threatening illness. And I would love for my dad to write from the perspective of parenting a child after being told she probably would be lucky to live to the age of 12. Our family has witnessed several miracles from God, who has gotten us through the many trials.
Even though I never acknowledged it until recently, I have a CF story, too. Illness doesn’t just affect the person who receives an awful diagnosis. Because of it, my other sister and I have swallowed some awful medicine, as well.
Now to have the courage to face the hard stuff and get it down on paper.
Are you the sibling of a seriously ill brother or sister? Or perhaps you are the one living with such a diagnosis. Please share in the comments. I would love to talk about it.
Susan- I hope you do write about it. I am a "stuffer" too, and try not to think about some of the harder emotional issues in life. I know it is not healthy but it is how I handle things. Bless you as you move forward to write your sister's story down. xo Diana
Hi Susan! Well, this God-arranged meeting at She Speaks really spoke to you, didn't it.
I have a nephew with Autism, and a niece with Neurofibromatosis. I do not live with them, but I see the stress my brother and sister-in-law have (they have both kids). It is so grinding, and they really do stretch for the joy. We have all decided that they are going to heaven.
God give you the grace you need to write about your feelings. They have infinite worth!
Ceil
As someone who's son has been recently diagnosed with a devastating disease I can concur that it definitely doesn't just affect the person diagnosed!!
Brett
I know when you write it, it will bless the lives of so many Susan. My son has angelman syndrome and I have always wanted to write about my life as his mom, but as yet only in my mind and heart. It does bring up so much doesn't it? I would think as a sibling it would be so hard and have wondered about my own amazing children. I wonder how their books would read?
That is great you met her and connected. I know you had a lot of notes to compare!!
Thankfully, none of us have anything life-threatening *yet*.
Thank you for the sweet comment 🙂