Denying the Obvious

 

This photo was taken yesterday afternoon before Jayde's doctor's appointment.

 As always, we have been trying to steal every happy moment possible, even though they have become few and far between. I mark my calendar with each new episode, wishing I could erase that particular day. Last night was Jayde's fifth SMAS episode in thirty-six days. Denying the obvious is no longer an option for any of us. The short-lived reprieve from her illness was a blessing and a curse. She is angry, frustrated, afraid, sad, and on the verge of giving up as she exclaims, "I don't want to live like this. This is not living!" She is right. She has experienced a brief taste of what her life should be like and desperately wants it back. I hold onto her as I hold back my tears, "It is understandable for you to feel hopeless, but know I will never give up on you. I will never give up hope."

Next Friday, Jayde will have multiple scans performed to see what has changed. The tests will be easy. The tricky part will be waiting through the weekend for the results. I hope the Wellspan radiologist knows what they are looking at now and doesn't miss what they did many years ago.

Tuesday, January 28, is Superior Mesenteric Artery Syndrome Awareness Day. Forget zebras; SMAS is the unicorn of rare illnesses. Only .013% have SMAS, and one in three individuals do not survive. These numbers alone are frightening, but they are merely numbers. When you witness your daughter suffer day in and day out, those numbers become real. This battle is isolating and lonely. I am asking our friends and family to show your support for Jayde as she struggles to find the strength to battle this illness again. Purple is the color of SMAS awareness. On Tuesday, please show your purple on Facebook or Instagram with the hashtags #smasawareness and #jrsjourney  No, your photos will not heal her, but on the days when she feels afraid, angry, frustrated, and hopeless, she will know she has an army rooting her on. 




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