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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Aug 21, 2017

Episode 8 is Part 2 of Mandy and Nolan’s story. If you haven’t listened to Part 1, head on over to Episode 7 so you have a better understanding and appreciated for Mandy’s story. I mentioned that Nolan was scheduled for surgery and I’m sure you’re interested in an update… and this is directly from Mandy: The doctors were able to perform a scope of his airway to identify the obstruction that is causing the apnea; however, after getting a closer look at just how constricted his airway is, they decided they could not safely proceed with the surgery. We are now discussing a more involved approach to the surgery and exploring other options all together. We are disappointed but thankful to be working with a team of doctors so dedicated to finding solutions for our one in a billion patient.

On this week’s episode, we learn how incredible Mandy and Nolan are and how MadB does not define him as a child. Mandy talks honestly and candidly with us about what it’s like to live with a child like Nolan and how the experience parallels emotions that she had in high school when she lost her mom to cancer. Mandy shares real stories about how others treat and react to Nolan, and she also talks about how incredibly adorable Nolan is and some of his favorite things: trucks, books, and a Bob Marley song.

Mandy also gives incredible advice about what she and her husband do to cope and gives these suggestions for other families feeling isolated by an illness or diagnosis:

1) Go hug your child and keep loving them - the diagnosis doesn’t define your child.

2) Try not to get too focused on the future, focus on making the most out of the present.

3) Don’t go through it alone.

4) Learn everything you can about your child’s diagnosis so you know that you’ve made the best decision you can.

 If you would like to reach out to Mandy, please message me and I will get you in touch with her through email.

Thank you to Gruene Photography for the beautiful pictures of Mandy, Nolan and their family. We can’t thank you enough for taking the time to give Mandy and her family these gorgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook.

Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode.

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