Superior Mesenteric Artery Syndrome Day 2022

There are images, moments, and emotions from the past several years that are indelibly etched into my mind and soul. They are forever a part of me, a part of her and her journey. I began documenting Jayde's journey with the hope it could help another family traveling our same path. My heart smiles, knowing we have. 

Because this battle is relentless, I chose to chronicle her story...the good, the bad, the ugly, and all the moments in between. I use words and photos, so on the days she feels as though she can't go on, she will see just how far she has come and find the determination to continue pushing forward, when with every fiber of her being all she desires is to give up.

January 28, is SMAS Awareness Day. Though no two journeys are the same, I would like to share the necessity for SMAS awareness day. This is a glimpse into our journey - Jayde's journey.

Since her diagnosis almost four years ago, Jayde-Rhiannon and I have cried a river of tears together and separately. Even with the countless hours and days spent inside hospitals and medical facilities it was a diagnosis, in my opinion, made sixteen years too late.

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. SMAS Awareness Day, it is the day when I wish I did not need to explain the purpose of the community rallying and 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.

I witnessed the light in Jayde's eyes extinguish the first time 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 a few weeks shy of twelve. 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. It also made their loss more profound.

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 equally 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 indeed are, even 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.

In 2020, after eighteen months of what was deemed a successful DDJ surgery, we watched as her weight plummeted from 112 pounds to 88 pounds. I fought back every urge to break down and cry as she lay 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 110 pounds, last week, she was almost at 108 - it is a rollercoaster. Over the past year, Jayde has managed to gain most of the 24 pounds she lost in 2020. It's a balancing act I wouldn't wish on my worst enemy. Her intense pain has been minimal since her surgery, but it never disappears. Her nurse still visits every Tuesday to place a new needle in her port and draw blood. We have chosen medical marijuana over opioids, yet some still dare to criticize and judge. There was a time I would have cared. That time has long passed.

She still experiences eight to ten-hour vomiting episodes. Thankfully they aren't as frequent, but they are still unsettling. Recently a new practitioner to Jayde's medical team used the ICD 10 code for anorexic and anorexia to justify a few tests. It's a wonder my neighbors didn't hear me roar, or maybe they did. You may think, no big deal, it's just a simple mistake. Except, in the SMAS community, being labeled with anorexia is a death sentence. Too many patients stumble upon doctors whose heart is not in their practice and view their patients as a commodity. Anorexia is a simple, easy diagnosis. Except for the anguish and havoc, this illness wreaks on the patient and their family, there is no mental component. This is not an illness that is in their head. My child has never had an aversion to food or any of the other criteria required to be labeled as having anorexia or anorexic. With us still searching for the correct doctor to manage Jayde's SMAS, after her surgeon passing last May, the incorrect code could have been an insurmountable obstacle had it gone unnoticed. Though it required a few phone calls, several emails, and a lot of fighting, the inaccurate codes have been rectified. 

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 and their fight matter. 💜

#SMAS #SMASyndrome #SuperiorMesentericArterySyndrome #SMASawareness #nottooraretocare #jrsjourney


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