Preparing for Firsts

Christmas Decor.  To decorate or not to decorate … that was the question.  I know that it sounds like an incredibly silly question, it is only decorations … but it was a decision I vacillate about for days on end.  With the Elephant of grief sitting on my body every day, would I even be able to do it?  Should I or is it silly because we will be heading to Tucket so soon and wont be around for much of the Holiday.  And then it became so obvious … Wylder’s Grinch tree MUST stand tall in our living room.  Of course we are going to decorate.  I love how it make me feel, I love the memories, I love that there is a tree that is only for Wylder … and I want our house to sparkle at Christmas.  Niemann Pick Disease has already taken so much from us, Christmas will be different and incredibly hard … but Christmas will be Christmas and it is the most wonderful time of the year.  So with my momma’s help the tree’s went up … with the Christmas music blaring.

snowman tree (we have had this tree for 13 years)

Grinch Tree

The trees are the only decoration we decided to put up, they seemed feel the most important.  Some of the other treats just felt like “stuff’ and work.  As Steven and I try to persevere through grief we both have become VERY aware of how materialistic items are just that … and they are certainly NOT what matters.  So this year the little trinkets stayed in their boxes and the trees are shinning for Wylder to look down and enjoy with us.  Oh, how he LOVED the Grinch!!!  We love your tree Littles, we do …. it makes us smile. 

wylder loving his grinch tree last year

As we prepare for impossible FIRSTS this year we were given a packet of questions to answer from Hospice with one another.  I thought it was super helpful and wanted to share it with those of you that are grieving for Wylder and/or others this Holiday.  What is important is that we communicate to our friends and family what feels right and wrong.  It will help us to understand each other and ourselves and get through these firsts together. 

wylder’s first thanksgiving


I predict that the most difficult parts of the holiday season for me will be; _____________ _______________ ______________

My riggers with be: _________________ ________________ ___________________

Words that can be helpfor me to me to hear would be _______________ ________________ _________________

we always took our christmas card photos on thanksgiving (1st)


Just a few options from HOV about how to create your own memorial/honor your lovelies; 

Plant a holiday plant or tree.  Make a toast to Honor your loved ones.  A Memorial Candle.  Place a single flower on the table  to honor the “presence of your loved one”. Share stories/memories.  Buy a gift for your home that has special meaning.  Journal.  Be gentle with yourself and ask for help when you need it.

These things above do not fix what is broken or the way we feel, but honesty in some small way will help us get through this time.  Thanksgiving is tomorrow.  Traditions seems impossible and yucky to us right now, as “going through the motions” as though nothing has changed brings anger.  So we are stepping out of the house tomorrow and heading to brunch.  A first.  The weather will be beautiful and we will walk, talk and remember that there is a whole awful lot to be grateful for.  Happy Thanksgiving Wylder Nation.  Squeeze your loved ones so tight this year … we are sending love from our home to yours.  xoxo

First Thanksgiving

Second Thanksgiving

Second Thanksgiving

Second Thanksgiving

Third Thanksgiving

Third Thanksgiving




  1. I am most certain Mr. Littles is giggling with his buddies as they enjoy The Grinch Tree…..I’m happy you continued his tradition, Shannon, as hard as it must have been. I wish I were closer to give you a mom-hug, but know that you, Steven, your family, and of course, Sweet Wylder will be in my prayers and we are in your corner always in support, love and continuing to pray for a cure for Niemann-Pick.

  2. Cathy Johnson says:

    Yay for you, Shannon! I love how you will not let NPD take anything more from you. You and Steven are incredibly brave; your honesty is a source of strength for many. A world of love to you!

  3. Hi Shannon, I just wanted to say that I’m glad to see that you went through with putting up the x-mas tree’s, I know it will be a difficult holiday season to get through without your little warrior baby, Our son never experienced the holidays with us, When x-mas came around I didn’t know how we were going to celebrate without him, Then I finally said lets make this a special holiday tradition, we bought a small x-mas tree and a bunch of angel ornaments, some lights, I put his tree up with angel figureines around it, and his picture right beside it, the netivity set next to it as well, So every year his tree has gone up, My father inlaw cuts a tree down or buys one and take’s it to the cemetary and decorates every year that is his tradition, and I am glad we do because I know he is loving the special attention during the holidays, everyone of our imediate family members has an ornament with his name on it. I hope this holiday season becomes a special time of rememberance of your little warrior! May God Bless you and Steven both with lots of love and courage to enjoy the holidays, Wylder will be right there enjoying it with you both, Lots of love and hugs….xoxo<2

  4. wow, what a powerful and emotive post. It really got me, you are so wise. I know it is so hard, it breaks my heart that this will be the firsts for you and Steven. I love your idea to go to brunch, that is so beautiful. I know Wylder is looking down on his tree and loving it. you are such a wonderful mama. I loved the picture of Wylder on his 1st thanksgiving in his little pouch. sweet, sweet boy

  5. Lindsey irvine says:

    Thinking of you and Steven during this time of “firsts.” you are so loved by so many and I know Wylder is looking down, smiling and happy. Lots of love and holiday squeezes.

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