Day 37, Superhero Day!

When we first arrived at CCMC, a very long 37 days ago, I noticed an informational video looping repeatedly on a TV screen in the hallway, with a short segment showing many of the staff wearing superhero shirts or costumes. During the next week, I remember hearing about “Superhero Day”, and how it was coming on April 27. At the time, a few days into our journey, I remember having two conflicting reactions to this – one reaction stemming from my difficulty in accepting this surreal set of events, not believing that we could possibly still be here by the time April 27 arrives; the other stemming from the deep despair of the moment, worried that we may not still be here by April 27.

Well, we were definitely here today, and Amber fit right in among the Superheroes!!

Superhero Day

Superhero Day is a special day at CCMC. As their site puts it,”In honor of National Superhero Day, caped crusaders took a break from fighting crime to visit with our patients who are fighting battles of their own.”

Amber is fighting a battle, fighting it hard. Today, PT brought a walker for her to try standing with. They helped her climb out of bed and grab onto it, and encouraged her to try to take a few steps. With them supporting her torso, and helping direct her left foot, she started pushing the walker forward, taking a few steps. And then a few more. Next thing we know, she is leading the way out the door of her room, into the hallway, and across to the nurses station, dragging the two therapists along with her! By the time she makes it back, a total trip of about 40-50 feet, she is exhausted and needs help climbing back into bed – but, she did it, and was proud of herself (almost as proud of herself as her Mom and Dad were of her!). Yes, she needed a lot of help from the therapists, but it doesn’t matter. She has the determination, and the motivation, to work real hard at this. And, over time, if we can maintain this momentum and the positive attitude, she will be more and more self-sufficient, and defeat both this evil villain and the next.

When I look back 37 days, and re-read some of our earliest posts to this blog, I am truly amazed at the distance we’ve already come. We have avoided posting pictures of Amber during this time – but feel it appropriate now, to contrast our current state against where we were at the beginning. Here is a link to a picture from March 22, hours after her first surgery. I am including this as a link, instead of putting the full picture right here, as some may find the image alarming, or at least may not wish to show it to children – it is of Amber lying in bed in a hospital gown, bandaged and hooked to many machines.

https://amberswayblog.files.wordpress.com/2018/04/amber20180322.jpg

Next week is a big week. Monday we have an MRI, and are expecting to receive the results on Tuesday. This MRI is checking on the recovery of the brain, and looking for any tumor regrowth. Then on Thursday, we go into surgery – first removing any bits of tumor that have returned, then replacing the piece of skull that was removed on March 22.

In preparation for this big week, we ask for continued prayer for Amber, that she continues to be strong in her determination, motivation, and Faith (these are her superhero powers!); we pray that it is within God’s will to grant us a miracle, no matter how big or small, toward Amber’s recovery; we pray that God continue to provide strength and clarity to the medical professionals providing for Amber’s care; and we pray for the strength to accept God’s will, whatever it may be.

And we thank our friends for organizing a special prayer service for Amber, this Sunday night at 7 PM, at our Church, St. Mary’s in Baltic CT. If you cannot attend in person, we invite you to join us in prayer at this time, wherever you may be located.

“You’re much stronger than you think you are. Trust me.” (All-Star Superman) Amber is proving this true, both about herself, and about us, every step of this journey.

11 thoughts on “Day 37, Superhero Day!

  1. Amber is sincerely a superhero to us all!!! She is an amazing warrior who will defeat all obstacles that she is presented with! Always in our prayers and hearts sweet girl as well your family!!! 💗🙏🏻

  2. Amber looks amazing! She is my favorite superhero 😍 Sending lots of love – xoxo

  3. I love the picture!! She has come a long way from the first day I seen her. She is a strong girl and the determination she has. It makes me so proud of her! ❤️❤️❤️❤️

  4. Amber, you look great and I know that you are putting a great deal of work into your recovery. You are a Super Hero!! There are many prayers for your recovery especially this Sunday evening. Know that we love you very much and we miss you!!!

  5. Wow…..they are awesome looking and go all out. So amazingly sweet and kind for all the kids, specially for our Amber!!! Yes, continued prayers for the week ahead. Though we are not there in person we will be praying. We love and miss you all so much. Love Auntie Mel

  6. Amber is unstoppable! She has been presented with so many hard, really hard, challenges that no little girl should ever have to endure and she fights back and continues to define “superhero”. Keep going, keep fighting, be brave! This beautiful little girl is an inspiration!

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