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 then that the color purple would become so symbolic?

It has been a challenging year in the SMAS community. We've seen too many warriors succumb 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 candidly discussing the graveness of Jayde’s health with my mother. 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 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 and sadly too far gone that most conservative measures do not work. As my Mom cried with me, attempting to console me, she sobbed, “I am praying and believing for a miracle.” I cried out in anger, “I lost two babies before her. I prayed for her, I hoped for her, I wished for her, I wanted her more than I have ever wanted anything in my life–she IS my miracle. So why is this happening to her?” Just like me, she had no answer, and that is precisely where we are in this journey right now–adrift with no answers. The return of Jayde’s illness is frightening and stressful for all of us, especially Jayde. The truth is Jayde needs a miracle. She could take another measure, a feeding tube, but they tend to be a downward spiral with many complications and dangers and rarely no return. Making everything up to this point seem like a day at the beach.

I apologize for the realness and sadness of this post. I wish I could find our silver lining, but it seems just out of reach. I hope next year we will be able to look back on this day and rejoice in how far Jayde has come. Until then, please keep sending your prayers and show Jayde some love with a sea of purple today.

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