Walk This Way

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We took full advantage of the long weekend and did a little exploring around the city with Evie in her gait trainer. This was our first time using the gait trainer on a family adventure since the Cerebral Palsy walk last September. We went to the aquarium and the children’s science museum and she loved it. It was a great experience for me too. I needed to see Evie be able to explore with some independence. My husband and I couldn’t stop talking about how much fun we had all weekend.

Today we had another follow-up visit with our Neurodevelopment clinic. It was a bit tough, but it was actually perfect timing that we had the clinic visit this week following a fantastic weekend. I have been amazed at the improvements she has made since her last visit. This girl constantly seems to defy expectations. However, we had a tough talk with the doctor.

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Evie is now two years old. She still is unable to sit independently. Remember that little instruction we were given that if she could sit independently by the age of two she would walk. Well today we were told she probably wouldn’t, at least not independently.

This was really hard to hear. I cried. Repeatedly. Not because of what her neurologist said, but because it just doesn’t fit with what I still believe will happen for Evie. What I still hope will be. And again, I was reminded that reality doesn’t always fit within the box that I had planned. But, reality is always better lived than dreamed.

I just kept looking at Evie after we had that discussion with the Neurologist. I kept looking at her smiling and playing. She was happy. I was crying. She wasn’t discouraged and I was trying not to be. I just keep thinking about how unfair it seems to count her out of the running yet. She is only two years old. Most children aren’t even potty-trained by the time they are two, but most are able to achieve that…at least by adulthood. Why shouldn’t I believe that she will still walk independently?

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I whole-heartedly believe Evie will be able to walk independently and live a full and independent life. I hold on to that belief while living in a realm and accepting the reality that that belief most likely won’t be true, but while also holding onto a hope that the reality is wrong. Basically my mental status update should read…It’s complicated. Sometimes as a parent of a child with additional needs, I feel like I am carrying a mixed bag of emotions with me. It’s almost like I have severe polarized moods swings, beliefs or hopes. I have feelings of happiness, discouragement, determination, resilience, and pride all at the same time. Please tell me I’m not the only one!

I am learning a lot about myself in this process. Life has its challenges, but that isn’t what you have to overcome. You have to overcome the emotions; the fears that are tied to those experiences. During these days where I find myself on an emotional rollercoaster, I just need to keep looking at Evie. I need to keep looking at that bright, smiling, happy face and I am reminded that our life is perfectly imperfect, and I really like it that way.

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5 thoughts on “Walk This Way

  1. Jan Shafer says:

    if we look closely, each picture of Evie has hands or support mechanisms in place to lift her as she happily mobilizes along. Each of us should and can be so lucky as we feel arms reaching out to give support as we wobble through life. There are hands ready and able to give support to each of us from various sources, may we all use them, appreciate them, and know they are there for us. May you feel that love and support today.

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  2. Jill says:

    Your daughter reminds me a lot of mine. Our daughter just turned 7, was diagnosed with CP at 14 mos old. She is a well-liked girl in first grade who has taught her classmates about acceptance, determination, and value. She uses her gait trainer in the classroom and everywhere she goes. We have learned that independence takes on many forms. We are grateful to live in this day and age where technology has advanced and our daughter has benefited- a gait trainer, a speech device for deciphering the tough words, therapy for muscle control, and lots of knowledgeable therapists and doctors in our court. It is very hard to stop comparing her with peers her own age, and to not feel she is ‘behind’ all the time. But we have learned that our daughter does everything on her own schedule, at her own time and never ceases to amaze us with everything she has accomplished. My advice to you would be to let Evie discover all her abilities and celebrate even the (seemingly) small ones. Allow yourself to cry and grieve- we still have moments when we are sad for the challenges our daughter faces, but that Is much overshadowed by the joy to brings to us and those who meet her!

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  3. Greg Shafer says:

    Honey, so sorry for the dis-spiriting moments you have along the way on this journey. Hope you are feeling better today.
    I’ve got odds on Evie, she’ll prove the doctor wrong, and will walk; and she’ll keep that angel smile on her cute little face, to keep all our spirits up until then : )!!
    All our love,
    Dad

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  4. iamaworkingmom says:

    Oh friend. That sweet little girl has her mama in her, which means nobody is going to tell her what she can and can’t do. Whatever her path looks like, she will make it happy and full of love. Love and miss you.
    Xo

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