Denying the Obvious
This photo was us yesterday afternoon, before Jayde's doctor's appointment. We have been trying to steal every happy moment possible, even though they have become few and far between. With each new episode, I mark my calendar, all the while 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 she 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. Waiting through the weekend for the results will be the difficult part.
Tuesday, January 28, is Superior Mesenteric Artery Syndrome Awareness day. Forget zebras, SMAS is the unicorn of rare illnesses. Only .013% have SMAS, 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 day out, those numbers become real. This battle is isolating and lonely. I am asking our friends and family to show your support of Jayde as she struggles to find the strength to battle this illness again. Purple is the color of SMAS awareness.
No, your photos will not heal her, but when she feels afraid, angry, frustrated, and hopeless, she will know she has an army rooting her on.