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Showing posts from July, 2019

Learning to Let Go

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 As I observe my little sister, a combination of adoration and envy washes over me. After an evening of floating in our pool, my nephew is peacefully sleeping in her arms. You can sense his pleasant contentment without worry or concern. I glance at Jayde, fondly remembering those days. Recalling the moments when her only care in the world was driving her Barbie car around our back yard.  When our children are young, we hold onto them simply because we can. Letting go is a gradual process. I remember the ritual with Brady. Now Jayde being on the verge of eighteen, I find it difficult to believe this is where we are in our journey with her. I realize baby steps are necessary at this juncture. Not just for me, but for her as well. Last weekend she slept over at a friend's house. Around 11:30, I received a text, "I miss you." When she arrived home Sunday afternoon, I received a hug, and an "I missed you" whispered in my ear. It felt good to be missed.  A few weeks a

First Do No Harm

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 Age brings wisdom, and with this wisdom, I have learned, “The pen is mightier than the sword.” It is also much more cathartic. Unless the day falls on a holiday or special event, we have made Thursday Jayde’s therapy day. It has been the one weapon in her arsenal of treatment, which helps her survive week to week. Two weeks ago, we endured a rather unpleasant experience during Jayde’s IV therapy session. The three of us departed the hospital feeling angry, frustrated, and with an overwhelming sense of concern. Never good emotions when receiving healthcare. I decided to send the following letter to the hospital's care team. Upon returning last week, Jayde was treated like the princess Chris, and I consider her to be. I can only hope this will continue in the future. "In the world of chronic illnesses, especially the invisible type, you become conditioned to doctors not listening or rather not hearing you. We are years past the random testing and misdiagnosis. We have moved bey