The other day, a new person posted on the Shwachman Diamond group that her son had just been diagnosed with Shwachman Diamond Syndrome. She posed the question to the group, "What can I look forward to..." I thought that was an interesting way to pose the question.
I'm sure she got the information she was hoping for. She got more than enough advice on pancreatic enzymes, bone marrow biopsies, infections, and the likes. Her question got me to thinking, not only how I would respond to her but what those words really meant.
Well, here is a little more than my allotted 140 characters of my response to the question, What can I look forward to with SDS?
1. There will never be a dull moment and if you do find yourself in a dull moment, embrace it, no matter how big or small. They don't come very often. Learn to love the dull parts of life, the mundane, the ordinary. Someday, in the not so distant future, you may find yourself craving those dull and boring moments. Someday, you may even forget what those moments look like and ordinary will be the farthest thing from any point of reference you have, compared to your 'ordinary' friends.
2. Welcome to the classroom of chronic illness! It's a smallish class and the lessons can often be hard to grasp and a little crude, even traumatic at times. You may be asked to repeat classes over and over, it's not because you failed the test, it's just so important and bears repeating. You'll be surprised at your level and depth of interest in things like white blood cells, platelets, how the pancreas functions and even the shape and color of poop! I said crude didn't I? You will never settle for the luxury of not learning. You will become a rock star at research and make the FBI look like amateurs and doctors will write blog posts about how insecure you make them feel. Don't listen to them...you are advocating for the most important person in the world- your child.
3. Some people spend a lifetime trying to break through the molds of society, refusing to be a round peg in a nicely fitting round hole. You won't have to exert that kind of energy to be different. Don't worry about tattooing your body in rebellion, piercing the shadowy parts of your soul like some wayward, puberty stricken teenager; chronic illness takes care of all that alienation for you with very little effort on your part. When people ask how the kids are...the transformation magically takes hold with your first response, "Not good." They will turn on their heels or some brave folks ask a few times before they learn it's better not to ask because they will never understand the volumes involved in the word 'FINE'. With that, you will feel different, unique; like someone with their own special place in the world so far removed, no one will ever bother you.
4. You get a front row seat to some of God's greatest miracles! Those are pricey seats you know. Not everyone gets the backstage pass to see God's hand in nearly everything! Not only that, those little and big miracles are happening right before your eyes with your own little creation of a child. Be careful where you are looking, they may not always be right in front of you but they are there, just look.
5. Sometimes, the things we need to learn in this life, can only be taught with chronic illness as our teacher. There are moments of amazement as you watch your child rise above the challenges; determined and more courageous than a fleet of Davids facing Goliath sized problems. Perseverance, grace and love, along with compassion for others, will blossom like a succulent desert rose when all around you is the scorching earth.
Speaking of love, a mother's love is fierce and deep as she cares for her stricken and sick kids. She will take the questions and accusations and roll them off her back, never showing the deep scrapes to her self esteem left behind. They will scab and scar and she will go on carrying that love to exponentially deep levels that very few mothers will ever feel or ever thought possible but you will know that feeling and it will move you to tears at any given moment, in the most tender moments, in the grim and dark moments, with every first accomplishment and every last, even in those moments that catch you off guard and no one will recognize or understand the slipping tears of pure love.
And that my friend...is what you have to look forward to!
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