How far we have come

Yesterday at the Doctors Office

9 Year old boy: Why is she in a wheelchair?
Me: She was born with cerebral palsy. Her brain has a hard time telling her legs what to do
9 Year old boy: So she can’t run or jump or climb?
Me: Not exactly, she needs help to do all those things
9 Year old boy: Will she walk when she is older?
Me: She is working on it.
Mother: Brandon!
Me to Mother: Its ok, I don’t mind answering questions, most of the time kids are more curious than mean
Brandon: That makes me sad.
Me: Why?
Brandon: Because she can’t walk
Me: Don’t be sad. She is not sad. She doesn’t know that she is different. She actually thinks she is a princess with really cool light up wheels
Brandon: Is she really a princess?
Me: (I wink at him) Yes, she is!
Brandon: Well she is pretty like a princess
Brandon to Mattie: You are pretty
Mattie: (continues to ignore conversation because she is watching a princess movie on my phone)
Nurse: Mattie Spinner
Brandon: Thanks for talking with me
Me: Thanks for talking with me (smile to myself and think about just how far I have come)

This morning:

Mattie : Mommy – I want to hear the princess songs
Mattie:  Mommyyyyyyyyyy – Belle first then Rapunzel (giggle) then Tianna
Mattie: Mommyyyyyyyyyyyy – Did you hear me? I want to hear the princess songs
Me: Ok Mattie, give me a second to get to a red light
Mattie: Mommy – Put it on!
Me: Mattie, Is that the polite way to ask for something?
Mattie: Pleaseeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee can I hear my songs?
Me: (music is turned on in order: Belle, Rapunzel, and Tianna)
Mattie: (giggles) I love the princesses. Mommy – Did you know I am a princess? My name is Mattie the Mermaid and I am the most beautiful princess mermaid ever.
Me: Yes you are babe!
Mattie: (starts singing along with Belle)
Me: (smile to myself and think about just how far she has come)

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3 years ago if you would have asked me if Mattie would be walking by 5, I would have said absolutely! I know I am a positive person, but I really did believe it. Now here we are, making birthday plans for her 5th birthday (ok I know it’s still 2 months away but I am a planner!) and Mattie is still not walking. It’s definitely not from lack of trying, surgeries or the countless hours at therapy. There was a period in my life that I felt stuck. Mattie was not really moving forward and not really going backward. I was struggling with my feelings about the progress Mattie was making physically. I was struggling with accepting a different path, a path that included her not walking by 5.

There were days I wanted to punch a wall out of frustration and days I wish I could call out sick and pull the covers over my head and cry all day. I never did these things although for my sanity (and Jim’s) I probably should have. I kept my head up and continued to push both myself and her forward. Somewhere along the way I finally accepted that Mattie would do things at her own pace and no one else’s. I finally accepted that Mattie would not be walking at 5. It has taken me a long time to come to terms with it. It just is what it is and just that. Mattie is almost 5 and can’t walk on her own AND I can finally say… I am OK with this.

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I think part of the reason I am moving on is the fact that Mattie has continued to develop in so many other ways. Her vocabulary is right on target. She has memorized complex songs and can sing them the entire way through. She is actually very witty and loves to say and do things to make us laugh. She can maneuver around an iPad better than me. She is super loving and will come give me a kiss and tell me she loves me when I least expect it. She loves when I hold her and dance. She thinks she is a princess and I never correct her.

 

Although I have accepted Mattie will not be walking by 5, I haven’t given up hope that Mattie will walk one day. She is closer than she has ever been. The surgery this past December has really helped her loosen up. She bends her knees like she should and she is starting to realize that she has 2 legs that can do separate things. She has been able to pedal a bike all by herself. Mattie continues to rock her crazy therapy schedule of speech, horse therapy, PT, OT, and ABM all with a smile on her face. So we all push on, in hopes that Mattie, the mermaid princess, will someday be able to walk, while winning each day at life.

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11 thoughts on “How far we have come

  1. I agree! Mattie is beautiful and can/will be whatever she wants to be! God has a plan for her, along with you and Jim! Enjoy these days with your princess, You are all so inspiring!

  2. She’s so beautiful, and one day she will totally be walking on her own. Mattie the mermaid will each and everyday bring a smile to all around her.

  3. I love reading your blog. You get me. I would love to know what kind of surgery she had. We’re considering a hamstring procedure this summer. My son is 9 years old with cp.

    • Hi Darla – The procedure is called SPML. If you search it on hopeformattie.com you will find more info about it. Only 2 doctors perform this type of surgery. It is very non-invasive and the results are incredible. There is a great FB group as well: SPML – Selective Percutaneous Myofascial Lengthening

  4. Hi,

    It was great to get the email and read the good news that Mattie’s knees have “loosened up” since her operation in December! We pray the increased knee movement will help with her PT.

    Susan Kinsinger

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