8 months :(

Steven and I have been staying very very busy.  That is always a good thing as it keeps the mind and body healthy and clear.  That being said we are still very much grieving parents and when we get a even a moment of quiet our emotions can be very overwhelming.  It is such a juxtaposition of feelings because everything we are working on and towards everyday feels so right, but only because it is so wrong.  I don’t even know if that makes since.  It is so wrong in our hearts that Wylder is not with us anymore and it is pain that I wish no one had to endure.  That being said persevering to provide treatment options for other children with NPD in the near future feels so right.  The hope that treatment options will provide families is something worth putting our hearts and soul into …. even if there are days full of anger and sadness.  It is a promise to Wylder we do not take lightly.  We also know this will not only help families fighting NPD but other children battling rare storage diseases.  As I am sure you can understand there is just  so much bitter and sweetest in everyday of our lives these days.

We are still working away to get our 501C3 Non Profit status for Wylder Nation Foundation.  Our primary objective will be finding treatment options and ultimately a cure for Niemann Pick A Disease and reduce the lives taken by rare genetic disease.  This has been a lengthy process for a few reasons.  One being that we are doing this only part time as Steven works full time, I am back to work part time and working away on Wylder’s books, as sharing his lessons is so important to me.  The second reasons is because it is very complex.  We want to make sure that what we set up is done properly so it can run as smooth as possible, that we are not duplicating research and that we are collaborating with the best of the best to put kiddos and there families through the least amount of poking and proading with the BIGGEST impact. It is amazing waht the medical industry has to offer these days that was not available just a few years ago.   This will continue to be a process, but we are moving in the right direction and will of course continue to share updates and happening right here on Wydler’s blog. 

Steven and I have also been planning some short upcoming weekend get aways.  We are really looking forward to spending some quality time with family and taking some down time with one another.  We are driving to California this weekend.  We even have plans to do a  whale watch on Saturday with Uncle Puppy and his Fiance Corrin… yep uncle puppy is getting married!!!!  YIPPEE.  I cannot WAIT to breath that salt water air … and wrap our arms around lots of family. 

wylder the whale, is that you?

wylder the whale, is that you?

Daily walks … speed walks have become a key part of my daily routine.  Walking miles and miles each day really helps me clear my mind and I am very grateful for our Arizona weather to cruise in.  I have even been tackling a few new mountains (new to me only of course) here in the valley.  Sweating it out and the victory of defeat … well, it rocks!  It is amazing how much I see Wylder when I am on these walks.  Weather is is heart shaped rocks, poppies in the desert, W’s in the sky, the smell of a breeze … everything everywhere make me think of him. 

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T1he MASK unity award luncheon is tomorrow … I am excited.  It is going to be an amazing group to socialize with and my mom and magic Beth are coming as my support system, yippee!!   

Wylder it is impossible for us fathom that you have not been in our arms for 8 months today.  We are so proud of you.  We know that all the things happening in our lives are because of you and for that we feel very blessed.  We love and miss you littles.  See you in our dreams. xoxo

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Comments

  1. Because of Wylder, For Wylder, and in Honor of Wylder….the world is and will be a better place. Thank you Mr. Littles xoxoxox WylderNation NY is so proud of you, Shannon and Steven…and as you continue to persevere until NPA is NO MORE!!!

    • Mommy and Daddy says:

      Thank you Leslie, everything you wrote is so true and so heartfelt. One day … a day without NPD! xoxo

  2. He will always be your guiding force – let him guide you along all the new paths you have yet to explore. Always sending love and hugs. xoxo

  3. I love this post!! I cannot wait to hear more about Wylder Nation Foundation:) It makes me smile soo big, you are so knowledgeable and I cannot wait to see all you can accomplish! and of course we will be here to help in any way we can! I am sorry you lost your baby, I can never think of anything good to say b/c I know there is nothing. I am just sorry, and know that we love you so much and miss him with you. I love your walks and all of Wylder’s messages to you, and I love your action to make your life and his matter, even though you have already made such an amazing impact. sending you so much love, Chelsea

    • Thank you Chelsea. It does feel amazing to be working on things that we believe will truly help other families someday soon. Thanks you for the constant reminder that you miss wylder right along side us and for us … We always feel your support and love from wherever you are in your travels. We are so grateful for you. Lots of love. Xoxo

  4. Cathy Johnson says:

    Shannon – I was away last week and out of touch with the internet, so my comment is a little later. I have already told Chelsea and Sarah how sad it is for me that all of these “un-anniversaries” are so much a part of me that I don’t need a calendar to remind me. I love the comments above and really could not say what I feel about Wylder, you and Steven any better than it has already been said. I do though, want to echo Chelsea. It is the real truth that I (and SO many others) miss Wylder right along side of you. Your beautiful sharing of his story has made him a part of all of our lives and he always will be! As always, sending mountains of love. xoxo

    • Welcome home Cathy! Thank you for all your contineud support and love. We feel you are missing and being proud of our wylder right along side us. Lots of love. Xxoo

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