Not too Rare to Care

 


Superior Mesenteric Artery Syndrome, to the majority of the world these are merely four random words put together, having no significant meaning. To our family, these words are anything but random or meaningless. These words have taken us on a journey of discovery, fear, anxiety, relief, and sadness. Today is SMAS Awareness Day. It is the day where I wish I did not need to explain the purpose of wearing purple. It is the day when I wish the same wish as the other 364 days of the year - that no one else needlessly suffers from this disease and the ignorance which surrounds it.

Though no two journeys are the same, I would like to share with you the necessity for SMAS awareness day. This is a glimpse into our journey - Jayde's journey.
Since her diagnosis almost three years ago, Jayde-Rhiannon and I have cried a river of tears together, and separately. It was a diagnosis made sixteen years too late.
I witnessed the light in her eyes extinguish when her doctor informed me, "She is not sick, well not in the literal sense, I think we should try Zoloft." At the time, she was only thirteen. Another doctor ignored my pleas, and instead of helping, told me, "Well she seems fine now. It is better to have a thin child than one who is obese." Though this account was the first time I heard those dismissive words, it wouldn't be the last. The doctoral ego along the way was so deep at times, I thought we would drown. This experience only made finding the few humble, yet wise, physicians even more priceless.
I have laid, sat, and kneeled on our bathroom floor with my precious girl more times than I could count. I have cleaned her trash can just as many times, if not more. Jayde's vomiting episodes are brutal, taking her days to regain her strength. I have often minimized how terrible things truly are, to those closest to us. Understanding, unless you live this journey, there is no comprehending how vicious it can be. Through it all, Jayde is the one who puts on a brave face for the world to see.
Only six months ago, I watched as her weight plummeted from 112 pounds to 88 pounds. I fought back the urge to break down and cry as she laid in her hospital bed with tear-stained cheeks, pleading with me to allow her to come home and die. I made my daughter a promise several years ago, "On the days when you feel you can no longer go on, I will carry you." I never comprehended how devastating those days would be, until that day in the hospital.
The scale is her friend, it is also her enemy. The same can be said about food. This week she weighs in at 97 pounds, last week she was almost at 100 - it is a rollercoaster. A nurse visits every Tuesday to place a new needle in her port. She sleeps three nights a week hooked to an IV bag. Each Friday I remove the needle, giving her a few days of freedom. Her pain is minimal since her surgery, but it never disappears. We have chosen medical marijuana over opioids, yet some still dare to criticize and judge. There was a time I would have cared.
With sixteen different diagnoses, this is the one we fear the most. The reality is, her surgery is a bandaid, not a cure. Making another reality more frightening, one in three do not survive this disease. Since our family became a part of the SMAS community, too many warriors have lost their battle. We are grateful for friendships forged with fellow warriors from all over the world. These beautiful souls have been a lifeline and an extension of our family.
This day is not a celebration, it is a day we honor those who courageously fought their battle but lost. It is a day to call for awareness and give hope to those still bravely fighting a battle so rare that most physicians are oblivious to its existence. It is a day when the .013% are reminded that their lives, their fight, they all matter.



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