Painting the Clinic

The Center for Rare Childhood Disease is moving full speed ahead!  So far they are on track to open this August, yeah!  This last week we made HUGE progress on the clinic by painting the exam rooms fun shapes and colors for the kids to enjoy.  I was thinking of Wylder every second and how he would have especially loved the red polka dot wall!  After a couple days of prepping, taping and going a bit cross eyed with my momma and Robyn (from TGEN) we were ready for the paint and brushes.  The volunteers came in full force this Saturday~ 

 It was just what so many have dreamed this clinic would be.  It was a community that came together to be a part of something BIGGER.  And to top it off … the rooms came out beautifully.

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I unfortunately caught my first cold in almost 6 years this weekend as was unable to help in the painting festivities.  I was so disappointed.  I did help with all the prep work before my sickness came on with a vengeance, but I am so disappointed I did not see the community come together with my own eyes and paint brushes in hand.  So I too am cherishing all the photos taken.  I am slowly on the mend and anxious to get back to the clinic so we can now get the lobby in tip top shape and ready to go.  This weekend was certainly a reminder of what having a bug and feeling down is like.  I could not help but think of Wylder and so many children that do not get to feel 100% on a day to day basis.  It was heartbreaking and a reminder for me to appreciate the days I do get to fell 100%. 

I also, wanted to remind you all about the decorative tile opportunity for the clinic.  I have a few more details on it now from TGen.  We are planning to hang decorative tiles on a wall in the lobby to create a community ‘art piece’.  This masterpiece will come together with the help of local artist Joan Baron (  As part of this instillation kids, parents, grandparents, and friends are invited to paint 4” tiles. Each tile is $20 and the proceeds will go additional items needed for the clinic.  When kids and families come to the new space, they will be able to see their tile as well as the tiles created by the other kids and families.

The tile painting party will be held at the new clinic this week and I will post as soon as I know the final date(s) and time(s).  It is looking like it will be Thursday evening or Saturday. 

 If you are out of state and want to participate and do a tile with or for a kiddo in your life please message me.  You can either send me a sketch of what you would like on your tile and I will do my best to draw if for you … or if there is an “as you wish pottery” in your area you can do your own 4” tile there and ship it to me.  Please email me anytime if you want to participate from afar.  Shannon@  I will of course continue to post pictures of this amazing-ness coming together as it happens. 

 This upcoming Saturday the 20th will be our one year mark without Wylder James in our arms.  It seems impossible most days and we are feeling much anxiety this week.  We have already received a few cards and notes from many of you in anticipation of this date and we thank you all so very much.  We miss our Wylder beyond words.  We know that all things are possible because of him … but it feels like much is impossible without him.  Wylder we will see you in our dreams little one.   You are so loved.  xoxo



  1. Cathy Johnson says:

    So utterly awesome, Shannon! I would love to have you do a tile for us – give me a few days to come up with a design. I know in my head what I am looking for, but I’m no artist! :) I have a feeling you might get overwhelmed with requests for tiles! :) So sorry you are under the weather and couldn’t be there for the painting festivities. I know how much this project means to you. But I am sure Wylder was there lending his Mommy’s artist’s eye to the whole day! Thanks for keeping us posted on the project – it’s such a wonderful effort! xoxoxo

    • Cathy Johnson says:

      There should NOT be a smiley face by the part about you being sick! Fat Finger Monday!

      • Mommy and Daddy says:

        No need to explain “fat finger Monday to ME” (ha ha). I am the queen of typo’s as my fingers are often quicker than my brain … just wish it was only mondays for me too (tee hee) xoxo

    • Mommy and Daddy says:

      I cannot wait to see the design you come up with Cathy. I am happy to draw on as many requests as possible. I think it would be nice if our Niemann Pick Families could be represented in a BIG way in the lobby of this center. I am happy to be on the mend now .. I too know that Wylder was lending me a hand. Thanks for wanting to do a tile Cathy!! xoxo

  2. Hi Shannon,
    I would also love to have a tile painted for the children. I have a working service dog named Dru (a sweet Golden Ret like your girl Maddie). I also take Dru to special needs classrooms as a therapy dog so the kids can love on him & read stories to Dru. It’s an amazing sight to witness the children come out of their shell & light up when they see him! So I was thinking of having a golden ret exactly like the one on the movie UP! (You know Dug the dog in that movie? So I can send you my rough sketch (& I’m talking rough because I’m not artistic at all! Hehe)
    Anyway my one question is…is the tile painting available for anyone who would like to participate? Our connection would be to all of the sweet kids who I’ve been following on the blogs about Neiman Pick. Let me know…thanks so much Shannon! I hope you’re feeling better & I so admire you & Stevens hard work & dedication to this project & all you two have done in keeping your sweet Wylders spirit Alive & helping others! You two are truly an inspiration & I so admire you both!!!i too lost my sweet baby boy, Jesse 5 months into my pregnancy. Hardest thing I’ve ever been through losing my loved & special baby boy.

    • Mommy and Daddy says:

      I am so sorry to hear about your loss Amy, so sorry. You sound like a special and amazing mother and person, and Dru sould like a perfect jem!! Wylder used to just love getting visits from the service dogs. What a gift and lite that is to so many families. We would LOVE it if you would do a tile, it is open to absolutely anyone! You can send me you sketch to . I will draw it up the best I can and send you pictures! It is going to be special when it is all done. xoxo

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