Marshmellow Brain

As I begin to go through the mourning process these last 7 weeks, I have come to realize there is not enough information or truth out there about the reality of mourning.  Although there are stages of grief, and everyone’s mourns very differently …. what is not explain is how deeply saddened you really are (your whole body), how much energy is sucks out of you, how both good days and bad come with a tremendous amount of anxiety, and how re-finding your own purpose/place in the day to day world is beyond difficult.  All of Wylder’s clothes are still folded in his drawers, his wishing tree notes are flying high and his bed sheets are cleaned.  My days were so full before …. full of love, full of duties and full of snuggles.  Now, although I still feel and talk to my Wylder … my days are SO different and so empty … even the purposeful ones.  Some days I have to worm myself out of bed at 10 am as I don’t sleep well at night, and decide what I am up to tackling … and other days I am bursting with energy to MAKE A DIFFERENCE in this world!  I run errands, cook dinner, try and make a schedule for myself that makes since … except nothing makes since.

Making my life matter, feels like the only sensible thing for me do right now.  I have pictures of Wylder everywhere; all over our home, on my car vizer, on my mirror when I get ready in the morning.  He is giving me strength.  I making a plan so as to pay it forward while artistically continuing to portray wylder’s lessons and making a difference in the NPA and medical world for others.  I am currently working on another website with a new logo that incorporates the WN logo.  A place where I plan to sell Wylder goodies; more books filled with Warrior lessons, stationary, plush toys and with every purchase … we will be giving back to what matters most to me in this world (Wylder’s research fund and helping lots of kids).  We are learning and speaking with your recommended lawyers friends to learn about non-profit organizations and expanding on our Wylder Nation community too.

warrior momma’s logo

Some days I do nothing.  i will try and do something and realize at the end of the day I have accomplished nothing.  My brain is like putty on those days.  You know how some times you just long for a do nothing day.  A lay and be still, football watching, no to do list day?  Well, if you are anything like I am … at the end of those days that you snag from time to time, you actually end up feeling worthless …  anxious and yucky … even though it is all you had thought you had wanted and needed.  Well that is sort of what I keep in mind with my worm-like days.  If I do nothing, I will actually feel worse at the end of the day.  So I am trying to live each day with great purpose, even though it is so tremendously hard and I am lacking energy.

Recently I have really come to realize that Wylder brought out my creative juices again.  It is as though he channeled through me in some ways.  Towards the end of Wylder’s life I would spread out art books and sketch and draw and write.  I would spread out all over the Master bedroom floor and create, with him sleeping just above me in his bed.  I would draw, talk to him, we would play music.  I would pop up of the floor to show him a creation and he just might open those sweet eyes to take a peek … giving me his approval.  So I have been pulling out these sketches and creating more.  Thinking and being grateful for all he teaches me and how he has made me and others better people.  WOW, Wylder is amazing!

easter 2012 …. sweetness!

Also, I owe some long over do thank you’s.  Thank you for purchasing Wylder’s book.  Every-time one sells I get a little knot of excitement in my gut that someone will be sharing Wylder’s journey and his lessons … and that it may  just help someone else a tiny bit in their life.  As I handed a stack of books to a man at a store the other day to display on his shelf, I shook his hand and said welcome to Wylder Nation …. he said, I am proud to be a part.  It felt so good, I literally had goosebumps.  Another thank you.  Thank you to all of you who got and plan to get pre genetically tested for NPA.  SIX of you in just 2 weeks, WOW!  It means so much to us, and will make a difference against this terrible disease (along with Wylder’s research fund in the future).  And for the letters, emails, text messages etc.  Thank you.  Thank you for helping us through an impossible time in our lives and lifting our spirits daily.  We started this blog one year after Wylder was diagnosed with NPA.  It was not something we took lightly or did overnight …. but oh my am I glad we did.  The support and love overflows and gives us strength and power!  We are so proud to have Wylder Nation behind us that continues to persevere.

jan 2010 (when we started wylder’s blog)

I don’t know that I am conveying all I want to with these blogs lately.  I know I have a lot more to say and will continue to post here … but I have a wicked case of the marshmellow brain.  Hope they are making at least a tiny bit of since.  Clarity coming soon, I hope.  :) xxoo


  1. Shannon honey, every single heartfelt word you’ve ever shared with us always makes sense. You’re so brave and generous to share Sweet Wylder’s life with us and your own thoughts and feelings….even in spite of your heartbreak, you continue to share, and we are grateful to be a part of your journey. We’re here for you always.

    I ADORE the Warrior Momma’s Logo!! It’s perfect! Your creativity is amazing!

  2. Every word written here makes perfect sense. So wonderful that Wylder is giving you strength and creativity. Know that you are not alone on this journey.

  3. we love you and we all understand. You made perfect sense and I am so proud of you for all you did fo rWylder and all that you are doing-he is lucky to have you as his mama bear. thank you for posting his pictures-i miss seeing his sweet face. xoxo

  4. you are so talented with art and logos-have you thought about making a print of a wylder nation quote for people buy and frame or making personalized ones like the one you made for ‘warrior mama” I think a lot of parents would buy personalized ones for their lost babies if you offered that service.

  5. Alice Daxon says:

    Oh sweet Shannon, you are being so very very hard on yourself. I lost my husband of almost 40 yrs. marriage the year he retired from work at age 60 … he just suddenly fell down in front of me & our disabled son & passed away with a massive heart attack. No previous health problems. I’m telling you this as the shock sent me into such grief that for the lst 18 months after he died I was literally ill with sorrow. My family worried that I might die myself, but I had to live for our disabled son. I can promise you that I know exactly what you’re saying about “marshmallow brain’ & “worming out of bed” lack of energy, purpose & motivation, etc, etc, these are all part of the grieving process & horrible to go through…I didn’t think I could ever eat, be happy, or motivated to live again. Unfortunately, it is a process which you have to go through and time (LOTS OF TIME) will make it easier to cope & “live” again. You are trying too hard, give yourself time, give in to your mind & body’s needs & stay in bed all day if that’s how you feel (but without guilt). Grieving is hard & exhausting, but it is because of your immense love for Wylder! Just remember he will always be with you in your heart & wants you to take time for yourself to heal now. Leave all the rest for when you’re stronger & can cope….you will know when it is time. Listen to your heart & body right now! Living will get easier, I promise you! TIME TIME & MORE TIME. Love & Hugs xxx Alice

  6. Cathy Johnson says:

    Beautiful Shannon – I cannot say it any better than the folks above. Everything you write makes perfect sense because no matter how you say it, we are able to know what you are feeling. If it helps you at all, know that each and every person who reads your words cries and aches with and for you. We also rejoice in your joys, whether they are huge or just little moments. The love and light in your heart bathe everyone in your life. Please know that because of your blog, I have added to my collection of “mantras” that get me from day to day and help me in my quest to be the best person I can: NO REGRETS!

  7. Cathy Johnson says:

    I should add, too, Shannon – I totally agree with Chelsea – especially on the personalized logos. I know that would be a lot of work on your part, but , WOW – what a gift to parents who have lost a little! Something to think about.

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