Showing posts from January, 2020

She is My Miracle!

  When Jayde was a baby, Chris thought pink was too basic a color for her, his favorite color to dress her in was a beautiful shade of lilac. Who knew the color purple would become so symbolic. It has been a challenging year in the SMAS community, as too many warriors have succumbed to this disease. Each death is a stark reminder of the anguish this illness can inflict on its patients and their families. A few days ago, I was having a candid discussion with my mother on the graveness of Jayde’s health. I explained my latest concerns over the two types of SMAS – acute and chronic. The long-term prognosis for acute SMAS is far better than that of the chronic type, which Jayde has. Acute SMAS is a sudden onset condition from a dramatic weight loss due to illness, surgery, or injury. This type generally responds better to conservative therapies or surgery and, in time, heals. Chronic SMAS is a long-term form, usually diagnosed once the symptoms are too severe to be ignored by doctors a

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 cha

Yesterday Was a Good Day

  There is no rhyme or reason. It is 4 A.M, and I sit on the floor beside her, rubbing her back. Except to just be here, I am helpless to make any real difference at the moment. I am the best friend who holds back her hair, except this is not from some stupid self-inflicted debauchery. This is her life. She has chosen to make her bed on the floor. I contemplate doing the same to be closer to her. The regular companions snuggle in around her. They are familiar with what the sounds mean. She is finally asleep in her bed. I check on her one last time. I pull the blankets up to my chin. It is now 7:20. Jayde's bathroom and trash can are once again clean—hopefully, for the final time. The laundry from the night's episode lays in the hallway. It can wait until later. Chris is peacefully asleep. I envy my sweet husband's ability to sleep/snore through anything. The episodes are becoming more frequent. The respite we enjoyed for a year seems like a distant memory. She has started l