Thursday, May 22, 2014

Meet Evie

This is Evie.

Our sweet, silly, sensitive 5-year-old daughter.
Her smile is a ray of sunshine.
She loves with a fierceness I've never seen.

She is the light of our lives. The best thing Jeff and I have ever done together.

She's adjusted remarkably well to our new life. She was at the beach the day of Jeff's accident. In fact, she saw it happen. She talks about it often, sometimes even telling complete strangers the events of that day.

She is what has kept us moving forward all this time.

She faces our new life without fear, without judgement, without the sadness of things in our life that will never be the way they used to be. We have learned so much from her outlook.

And she has learned so much over the past 10 months. She knows things that very few other 5 year olds know. And she does things even adults are scared of.

Example: here she is switching Daddy's vent tubes like a pro.

We are so proud of our girl. We know that she will face many challenges in this life as she gets older - having to field questions about why her Dad is different from other dads, having to educate her peers on what it means to have a dad with a spinal cord injury. And we hope that her caring nature and determined spirit will help her meet those challenges with success. She's done just fine so far.


  1. Several members of my family have been reading your blog posts since yesterday (9/22/14). My daughter Jessica Parris will share with you soon about the amazing similarities between our story and yours. You are helping us SO much. Thank you! Evie reminds me a lot of my kindergarten 5 year old grandson Jace and the way he had dealt with his daddy's paralysis (total in both legs and one arm) as the result of a nearly fatal stroke on 11/27/13.

    1. Steve, hearing that my words have helped your family mean so very much to me. I've learned that the connections we make in this life, especially with people who have experienced similar struggles, are what help us to keep moving forward. Thank you for reaching out. I look forward to hearing from your daughter, Jessica, to learn more about your family.


  2. Kristen - I'm sure you know what really "rough" days are like and Jessica is having one of those with Chuck today. She wrote out something for you late last night and sent it to me to review (I thought it was wonderful) but she just hasn't had time to post it yet. If you have the time, you can get a bit of a feel for Chuck, Jessica and Jace's story on the following Facebook page that I created shortly after Chuck's stroke:

    I could spend the rest of the night sharing all the similarities about our stories, but us caregivers need our rest too! I've read several more of your posts this afternoon, and even showed Chuck the video of Evie changing Jeff's ventilator. Both of us were very touched! Your story about "Nana" and Evie was almost identical to mine ("Papa") with Jace. Peace and best wishes to your entire family!
    Villa Rica, Georgia

    1. Steve - thank you, thank you for directing me to the "We Love Chuch Parris" Facebook page. I am making my way through the posts and photos. Sometimes I can't even see the screen through the tears in my eyes! The similarities our families have endured are remarkable. This is a story that truly speaks to my heart.


  3. Kristen - I'm glad you were able to read (and see) some of our story! I'm also glad to hear that I'm not alone in reading posts through tears!!! I just had to "kick" Jessica out of the house in order to help her regain some sanity! We talked on the phone after she left and she asked me to copy and paste what she had written for you on Monday night, so here it is:

    Kristen, thank you so much for sharing. Although my husband did not have an SCI, he had a stroke on 11-27-13 (he was only 34)that has left him virtually paralyzed from the waist down. He only has little movement in one arm but can't do anything functional with it and the rest of his body is limp and has a lack in some brain function. Although, I know our situation is different whereas there is that chance to gain back movement, we have been told it is very grim. Reading this blog reminds me sooo much of our daily life. We too have a 5 year old and are having to adjust to a new normal. I was drawn to your post on the flying tire because of the Ernest Hemingway quote. I often don't have the words to even describe our situation to others who don't know what it's like. Finding someone who can understand a glimpse of how us young caretakers feel, is rare. I love the realness in your blog
    and hope one day I can share our story too as you have. People often think just cause my husband had a stroke that he has a droopy face and just a little bit of trouble with day to day life but in reality his situation relates a lot more to an SCI injury minus the permanent ventilator(although he was on one for awhile and had a trach for months) during his 7 month hospital stay. My family and I are all reading your posts tonight sharing back and forth the similarities and intricacies to our story. Thank you again for the hope and comfort I have in your stories.

    1. Steve - Jessica's note means so much to me. Thank you for sharing it. I sent both you and Jessica a message via Facebook so that we can continue to keep in touch.