She’s a Butterfly

Today is the one year anniversary of the FB group I started when we put Sara on this protocol which means she has been on it for just over a year herself.

It has been a WILD year!

Aside from the fact that the Facebook group has grown to almost 18,000 members in one short year (and is keeping me busy!), it has been the success stories that get posted daily that really amaze me and motivate me to keep going.

However, our own personal Success Story  will always be my favorite because it has so profoundly changed our lives.  Watching Sara recover and blossom this year has been amazing.  12 months have passed and yet daily my husband and I still say to each other “Can you believe this??”

When Sara started to recover I went through a range of emotions.  I definitely had some PTSD to deal with after 3 years of watching her decline and some pretty traumatic moments with her.  I had moments where I was so jubilant and full of joy.  Moments where I was scared and worried about regression.  Also, moments where I was frustrated, proud, impatient and on and on.

But never once did I have that sense that – this was meant to happen.

So many times I have read stories where people say that being diagnosed with a tumor or having some other tragedy was the best thing that ever happened to them and I could comprehend why.  Many people almost need that “wake up call” to realize what is truly important in life and require them to slow down and live in the moment.

But I was not that person.

So for a LONG time, I could not make sense of WHY.  Why did this happen?  What was the lesson?  The point?  The purpose?  Why did we have to go through all of this?  I did not feel that “we are better for having been through this” sensation that people talk about.

In fact, I was mostly mad and sad about the loss of so many things.  Sad that Sara had been through so much and missed so much.  She missed out socially, she missed out on her education, she was “absent” for most family functions.  She lost her self-confidence, friendships and so much more.

Financially we took a hit as well, as most of Sara’s therapy, equipment, and special foods was really draining on our modest income.  We had to remortgage our home, stretch out paychecks, cut corners, and often say “no” to fun outings.  It was a priority to have her needs met, so we did what we could and figured it would sort itself out later.

Emotionally…we were all broken.  I personally felt like I was living in a snow globe that was picked up and shook often.  Everything that once was normal was constantly changing and it was at times hard to recognize any hint of our old life.  I often told people that Sara getting sick had changed me to the core.  In some ways for the better but in many ways I had lost the best parts of myself.  Gone was that easy laugh and all day joy.  Gone was that unwavering belief that “Everything will be fine” – I was acutely aware that everything was NOT fine and getting worse every day.

Worse…gone was that chill, go-with-the-flow personality.  Now I was constantly on high alert.  Always looking for things that would trigger Sara, upset Sara, be difficult for Sara, gross her out, give her anxiety, make her tired etc.

I used to not dwell on the details and now my entire life revolved around the smallest of details. Will it be too loud? What will she eat? Does she have her glasses? How did she sleep last night?  When did she last poop?  Do we have those specific apples?  Should we leave before she gets overwhelmed?  It was never-ending.

Gone was that chilled out, Hakuna Matata mother. I missed her dearly and knew that she would never, ever truly come back.  And that made me MAD.  So it has been really hard for a LONG time to ever see any value in this experience.

But Sara is a hero.  She truly is, and after I healed her, she healed me.

She told me all the time that she believes that everything happens for a reason and that she was MEANT to go through all of this.  That she is happy that she went through this experience (which is easy to say when you don’t remember most of it!) and that she believes that her story can help others.  Which was sweet – but I was still pissed.

And then slowly, very slowly, I watched her transform into something better than she was before she got sick – if that is possible.  Before my eyes, she became something greater than she could have ever achieved if her life had been normal.  She emerged from this experience with all the wisdom and perspective that one would expect after being so chronically ill and broken.  She is determined, compassionate and wise beyond her years.

Recently, Sara shared with me that she was at school listening to some boys poke fun at one of their friends who has not been coming to school recently. He has some issues and has been spending his days at home on his Xbox which was something that provoked them to make fun of him.  Sara told me she spent that entire lunch hour explaining to them what it feels like to not be able to get to school, how lonely that is, how difficult that life is and that they should not judge.

And *poof *– at that moment I thawed and began to warm up to the idea that this experience might be “the best thing that ever happened to us”.  That in fact…we might all be better for it.

So now we are all emerging from our imposed cocoons.  We are all changed into something different and maybe something better.

When Sara was a toddler I asked her once what she wanted to be when she grows up and she replied: “A butterfly” which I thought was adorable.  As she walked away she turned around, pointed her finger at me and said: “And you’re gonna be a Butterfly’s Momma!”  And she was right all along!

I made this video years ago for Sara and hope you like it 🙂

 

 

 

4 Comments

  1. Thank you so much for this post and congratulations on your daughter’s recovery. I have felt the same way and wondered why we had to go through this as well. My son continues to recover on Nemechek (only 2 months in) and we are so grateful, but it has been hard. The success stories you post keep me going. Thank you!

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  2. Hi Kelsey,

    Sara’s experience and your video saved my grandson’s life. Last fall, when he was 3, Henry was diagnosed by his paediatrician with autism and selected to attend a specialist school in North London. In October 2017, his midterm report stated that he was “severely disabled”. He didn’t eat, sleep, talk or understand simple instructions. He was sweet as could be but Henry existed in his own separate little world.

    Luckily, I found the beautiful video you created of Sara and, with his parents’ consent, we started Henry on Nemechek on 8 December 2017. Within 3 weeks, Henry was sleeping through the night. By January, he was eating. By February, he potty trained himself and by March he was speaking. It is now June 2018 and Henry is so vastly improved that I don’t believe the word “miracle” would be overstating things

    I will forever be grateful to Patrick Nemechek for puzzling out what autism was and then creating a protocol to solve it, but also to you for the enormous compassion and kindness you shared with all of us struggling to help our beautiful ASD children and grandchildren live happy, productive, joyful lives.

    Thank you, Kelsey. Bless you, Sara.

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    1. I am utterly speechless. Thank you so much for writing to me. In many ways it was hard to put ourselves, and our story, out into the world and messages like this one make me so grateful that we did! I am so happy for you and your family and I am thrilled that you are getting recovery. Please keep in touch as I would love to hear more updates! Will make sure that Dr Nemechek and his wife hear about this as well! Bless you!

      Like

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