They don't look sick
'It's 2:00pm, the kids tumble through the front door after school bringing with them renewed energy and empty tummys. After a quick and less than nourishing snack, we pile ino the car to tackle the chores. It's difficult to blend into the crowds with 3 active kids, one of whom as bright orange hair! We can always count on two or three remarks about the hair, inquiries as to its origin, followed by "Do you ever have your hands full." My standard reply, "You have no idea!" and I feel my insides cringe with anxiety at this exaggerated understatement.
Occasionally, the conversation will then focus on their size. Such tiny compact frames which so obviously disagrees with their calendar age. In a moment of weakness, I tell them of the genetic disease which has found a home within their non-consenting bodies. They want to know more so I share with them the Disney version of our ride through chronic illness. It's not for pity or sympathy but just to be heard, understood and validated. Funny how I allow a total stranger to witness this. During our conversation, they will inevitably make two more comments. "How do you manage to smile?" and "Well, they don't look sick."
No sooner does this exchange take place that the masquerade of strength and courage tempered with a measure of apathy takes hold. The timing is graceful and emotions just enough to soften the cold hearted sound of my voice. Each word is carefully selected and skillfully used to protect the raw emotions never meant or allowed to be revealed. I pull it off as if each sentence had been choreographed, rehearsed and refined more than a thousand times. Despite my best attempts at a scientific explanation of what Shwachmand Diamond Syndrome is, there is still confusion surrounding our communication.
I even ask myself what the disease is. The doctors behind their fancy titles act like they know but really they have no idea. Some days, if I'm lucky, I feel pretty confident in managing my children's care but then out of the blue, a new problem is discovered and then a shiver pierces my spine and I realize that even I don't know what SDS is. We have been told the basics, pancreatic insufficiency, bone marrow failure and a handful of other abnormalities but if you ask me, this is not at all what SDS is.
SDS is mischievious. It's a rebellious soul wreaking havoc on a peaceful quiet home. Don't turn your back on it for one minute because as sure as you do, you will lose your grip on reason and logic. It moves fast and plays a game that will make you feel crazy. Soon your family members and trusted doctors will begin to question your mental stability. For the most part, no one knows the rules to this game of wit, especially the doctors but a mother knows. We take on the rage of this wayward thing known as chronic illness. It's the magic of a mother's intuition that saves the soul. The soul and heart of her precious family. We suffer the criticism, the accusations and accumulation of well meant but hurtful comments that sear and scar our fragile self esteem. We fight and fight in the name of love until our point is made. Each day, we awake on the battle front, poised in a bunker to bravely shield the innocent from the ever present force of SDS. We don't have the luxury of turning our backs. To do so would be giving up hope and greater peace.
The encounter with the stranger comes to an end and my wandering mind returns to the moment. Life becomes normal until you are forced to discuss it. The speech is so rehearsed I don't even have to concentrate on my words, they just spill out. However, I am never lucky enough to escape one final heart wrenching statement, "Well, they don't look sick." They sound as though I just made the whole thing up. I purse my lips and say goodbye.
Perhaps they don't look sick but does SDS have a 'look'? Does any chronic illness have a 'look'? If you want to know what SDS looks like, don't look at the kids, look at the mother. SDS is grey hair at 30 spiffed up with dark, hollow circles under the eyes from keeping watch through the night to temper the fever. It's another migraine from trying to understand 1/5 of what the hematologist is saying. It's falling tears sometimes just because someone understood me today but usually out of shear exhaustion. SDS looks like supermom, hyper organized in managing a care plan because no one else will and all the while being caught up in an undercurrent of fatigue. It's bruised egos, broken hearts and scraped esteems. The mother is the shock absorber, the preservationist for childhood innocence, the glue that keeps the heart together.
So, one final question they ask, "How do you manage to smile?" A smile is a little care package from God that he sends to pass along to my kids. A reassurance that He is here, mommy is here and everything is going to be okay because they are my joy and my delight. A smile magnifies my love and by the grace of God, strengthens my ever growing weakness.
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