Thoughts from a CURE Parent…

Days Like Today-

These are the days no one warns you about. Yes, you get into a new normal with medically needy children, and you learn to balance the endless days at the hospital, the middle of the night ER trips, and the normal life doctors visits. This becomes your new normal. And you become ok, really ok, with this new normal. It takes time, but this is your normal now, and it’s good. What people don’t warn you about are the EXTRA life events that inevitably happen. The events that, for a normal person, causes stress. Holidays, anniversaries, weddings etc. Days that are supposed to be joyful… But instead, a stark reminder that your “new normal” of life isn’t normal at all. These are the days where your heart is in two places, because usually your child can’t attend such gatherings. A day where your whole family might be in pictures, minus your child. A day where people you rarely see will bombard you with questions about your life that seem sincere, but they don’t realize you’ve been asked all these questions 100 times all day long. These are the days that are the hardest!

To the parents or caregivers reading this, I see you. I see you trying to be happy, and possibly avoiding people. I see you struggling through your emotions and “trying” to have fun. Most importantly, I feel for you, and you’re not alone. It’s ok, EMBRACE your new normal! These harder days will pass.

To the family and friends reading this, remember our feelings might be different than yours. It’s a happy day, yes, and if we look sad, don’t take it personally. Also if the day is not about us, don’t make it about us. We don’t want to be the center of attention, it’s not necessary. Please don’t ask us how we are doing or what the current medical update might be. Enjoy the fact that we showed up, because it was hard for us, and help us enjoy the day as best we can.

August Newsletter 2019

July 2019

June 2019

10th Annual 5K & Fun Walk

May 2019 Newsletter

A note from Adella

When I started as Parent Advocate two years ago, I distinctly remember asking Kiersten, who was training me at the time, “So, let me get this right, I just have to talk to people and support them?”  I remember thinking, “how easy”.  Little did I know, it’s not at all easy.

Nine years ago and a million memories have passed since our daughter, Kaytee, battled Leukemia.  Every day was a struggle.  Every single day!  An abnormal norm became our routine and we found ourselves part of a new family.  A family made of nurses, doctors and healthcare workers, as well as fellow fighters and caregivers.  You know when you are in the presence of those who have walked the road you now find yourself on, because a type of soft kindness comes over their eyes and their entire posture changes.  You become a listener and postulate an air of understanding, because you do.  So, I found that when I spoke with families that had just been diagnosed, or that have been on the front lines for years, these characteristics became a part of who I became.

Over the past two years, I’ve met many new families.  I’ve laughed with some and cried with others.  I’ve seen some win the fight and a few take their last breaths.  For those of you that know me, you know that each experience has had a profound effect on me, personally.  Getting to know you, your child and your entire family, has been the biggest honor in my life.  I want everyone to know that I will never forget any one of you.  You have helped me heal from my own personal journey with my daughter and the difficulties I experienced with that.  You’ve allowed me to share some of the most difficult times of your lives and I hope that I was able to help with a caring and understanding ear.

I would like to leave with a quote I recently found.

Thank you everyone.  Thank you so very much…

Spring 2019 Volunteer Newsletter