Perspective

I have always known that life is so much a matter of perspective, that “life is 10% what happens to you and 90% how you react to it.”  I have never had this tested as much in my life as I have now.

As I was ready to post my blog last week about perspective, I was challenged with my own perspective.  As I try to stay positive throughout this journey, I was struggling.  A few months ago, my sister, Holly, met a guy who runs a rehabilitation facility in the LA area, the NAPA center (Neurological and Physical Abilitation center).  Holly  has been asking me to go and check out this facility.  People come from all over the world to this facility for intensive treatment, both traditional and non-traditional therapies.  I went last week with Peyton for an evaluation.  Let me say, the NAPA center is an amazing facility and we are happy we found it.  The people there were loving and accepting, completely understanding and comforting.  Thank goodness, since the minute I opened my mouth to introduce myself, I started crying.  Once again, (if you have read my previous posts) I was overwhelmed and shocked by my emotions.  In that moment, I felt as if, out of the blue, someone ran up to me, shoved me to the ground, smacked me in the face, kicking me as hard as they could while yelling, “Your daughter still has PWS!”   You would think I would be used to it by now, explaining our situation, being overwhelmed by my emotions, but no, I keep being taken by surprise, caught off guard.  I know that I am not in denial about Peyton nor my emotions, it is just difficult at times because she is doing so well and when you look at her, it is hard to imagine that there is anything wrong with her.  When I go to a new place and have to introduce myself and Peyton and tell our story, it just brings up all the emotion from the day we were told of Peyton’s diagnosis.    After the evaluation and my experience, I was trying so hard to find the silver lining, to keep a positive perspective, but I couldn’t get out from under my hangover of emotion.

Today, I brought Peyton for her first therapy session.  We have therapy 6 times a week at home, so we have chosen to use the NAPA center for some non-traditional therapies, most specifically CME or Cuevas Medek Exercise.  This is a form of physical therapy that exposes a child to the influence of gravity.  Peyton’s first session was painful for both her and I.  She cried through the first session and subsequently, so did I.  It was extremely challenging.  We call Peyton the WBB, the World’s Best Baby because, quite simply, that is exactly what she is, the World’s Best Baby.  She has the sweetest demeanor and she is just the most loving, easy-going baby.  She does not cry a lot and when she does, she is easy to console.  Today, was the most and the hardest she has every cried.  About 35-40 minutes into our hour long session, I had enough.  I knew this therapy was helping Peyton, but that was all we could handle for today.  I left there feeling sad.  I was sad that Peyton had to go through this, through therapy, through PWS.  At the same time, I wanted to stay grateful for finding the NAPA center (Thanks Holls).

Tonight, I was holding Peyton, she was sitting on my lap and she was so aware of her body, holding her head so straight, using her arms to support herself, engaging her stomach muscles, and there it was…the silver lining.  I couldnt’t help but say to her, “we are doing it, we are doing it, Peyton.”

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14 thoughts on “Perspective

  1. Hang in there, Renee. You know what needs to be done and when to back off. You have the internal knowledge to do the right thing. Trust your instincts. There are many of us out here thinking of you and supporting you with positive energy. I only wish we lived closer and could provide more tangible support. Love to you and your family.

  2. I continue to be in awe of your courage! I am so inspired by you Renee! Can’t wait to see you guys soon, I bet Peyton has grown so much! LOVE

  3. I still get emotional and tear up when I read your stories with Peyton. Not because I’m sad for her, or for you. But because I’m proud of her, and proud of you. You are am amazing mom and she IS the WBB. big hugs to you both.

  4. You are able to put into words some of the exact feelings I have experienced while raising Justin. I often wondered what the rest of the world was doing while we spent countless hours in therapy. But to this day Justin remembers so many of the obstacles he overcame because of all the wonderful and committed therapists, teachers, physicians and many others that helped him along the way. He even recalls the names of the people that he met in his late toddler years and on. That is what a difference they made in his life. Keep up your great persistence…you will have so many success stories ahead. They will offset the heartaches that come along this bumpy road 🙂 xo.

  5. Seeing Peyton today was so wonderful. I was so happy to see her and now I know why. What a sweet little angel. I don’t think I have ever seen a baby smile as much as Peyton. I know why she smiles, because she is surrounded with love.
    Keep working with that little one it will all be worth it. I told your Mom that I truly believe that through Peyton and your new circle of friends you will meet the most amayzing people. Friends worthy of having you and your beautiful family in their lives. Not shallow, boastful people but those who are thankful for the blue sky and silver linings. I hope that each day you will find a new silver lining.
    Merry Christmas to you and your amayzing family.

  6. RENEE, THANK YOU SO VERY MUCH FOR KEEPING IN TOUCH, THE LETTERS ABOVE EXPRESS MY FEELINGS EXACTLY. I KNOW SHE IS GETTING THE BEST CARE POSSIBLE. IT MUST HAVE BEEN VERY DIFFICULT FOR YOU WHEN PEYTON WAS CRYING, USING THE MUSCLES WILL HELP TO STRENGTH THEM.. WITH THE RESEARCH, ETC. THERE WILL BE A CURE
    MY THOUGHTS, LOVE & PRAYERS ARE WITH ALL OF YOU. LOVE GRANDMA

  7. Renee….your messages and stories are so amazing. The strength and courage you show to the rest of us is so inspiring. You are an amazing mother, woman, wife, daughter and friend and you need to remember that and hold on to the love and support from all of those around you. The tears you shed are a release. They wash away the past, pent up emotions and revitalize and strengthen you for Peyton and each day ahead. Remember that God is GREAT and ALL things are possible through HIM. Peyton is so very lucky to have such fantastic, loving parents, family and friends to love and support her. And you and all of us that know her are so very, very lucky to have her and the love and inspiration that she gives just with her smile. We love you all and will always be here for you. Peyton and your family are in my thoughts and prayers daily. Bobbie 🙂

  8. It is so heartening to read the comments of your friends and family members, for they are all reaching out to you with gifts of understanding, love, and devotion to Peyton and to all of you. The journey that Aurise Gallucci has made with her own child and the commitment that so many specialists dedicated to him and apparently to the successes he now enjoys is tremendously encouraging. Some of us are endowed with enough emotion for several people, while history reveals that the tyrants of the world had none. Be so glad that you feel so intensely for little Peyton. The Mother is the fulcrum around which the rest of the family revolves. You will be so surprised one day when Chad is asked to write about the person he most admires and he will write about you and the tenacity and spirit that you have revealed in this effort to give his sister every opportunity available to live joyfully and productively. There is a huge cheer leading section on the sidelines for you and your family. Our very best wishes for continued successes with Peyton in the new year. Carol P.

  9. I am just so in awe of you, Peyton and your beautiful loving family. She has been blessed by finding such a beautiful Mama and you, in turn, have been blessed by the angel who is Peyton — the WBB! Thank you for sharing your inspirational experience, Renee. xo

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