Tile Project

Thank you all so much for the incredible well wishes last week and messages of hope. It helped us through another difficult week. We continue to feel so blessed by the family and friends in our lives, and everyone who surround us believing in all things Wylder. This was the sky Wylder gave from our back yard last Sunday night as we watched an incredible storm roll in. I have never seen a sky like it before.

SkyonAngelversary3SkyonAngelversary2SkyonAngelversary

This last week I managed to take some time to work on the decorative tiles for Dr. N/TGen Center for Rare Disease Clinic. My mom and I made a fun day of it and tackled the amazing drawings from many of you that you sent our way. Spending the day at As You Wish Pottery is always a treat for me (what a dorker I am). We cannot thank you enough for being a part of this; it really is going to be a “community built center”. I even had the privilege of getting a sneak peak at some of the tiles the kids have done and they are AMAZING! I spotted an Elmo, a ballerina tutu, and even one with photo on it. YEAH! We did the best we could with the designs you sent over and hope you love them.

before hitting the kiln

before hitting the kiln

before being fired

before being fired

 

wylder's aloha tile from us

wylder’s aloha tile from us

Little Garrett's tile from his mommy

Little Garrett’s tile from his mommy

from aunt liz and uncle larry

from aunt liz and uncle larry

from aunt sue and uncle bernie

from aunt sue and uncle bernie

from wylder's cousin's The Latta's

from wylder’s cousin’s The Latta’s

Wylder's Gran's tile

Our Colorado family was hard at work on their tiles too…. we cannot wait to see the final tiles. Loooooovvveee you sweet nieces and nephews.

tiles4tiles5tiles6tiles7

It is so hard to believe the clinic is opening THIS week! WOW. The first patients will be seen this Friday. That being said the clinic decor won’t be completely finished until September … but I don’t think those first patients will mind one bit. What an exciting time this is for the rare disease community!

That’s all for tonight … more updates and happenings soon I promise. Steven and I are planning to go to the National Niemann Pick Conference at the end of this week in Baltimore. This will be my first time and I am a bit anxious about it. That being said I cannot wait to meet and squeeze many familiar face who I have only meet online. It is going to be an overwhelming weekend no doubt. Wylder, we miss you and we love you little one. I’ll see you in my dreams. xoxo

cuteness coming through!!!!

cuteness coming through!!!!

Comments

  1. Shannon…..Wylder Nation NY’s bunting and banner is in its final “creative construction” stage…..I will message you when it’s ready to make its way to you xoxoxoxo

    • Mommy and Daddy says:

      I cannot WAIT to see it Leslie!! I know it is going to be just beautiful with your crafty touches. Thank you, thank you, thank you. xoxo

  2. Beautiful creations from amazing people – Wylder’s sky and all the tiles. We will see you at the conference, you will be welcomed with loving arms.

  3. Cathy Johnson says:

    So glad to hear you are going to the conference, Shannon. I think it must be so amazing to know that you will be meeting some of your NPD family face-to-face. It’s an unthinkable reason to be connected, but I believe that having that physical connection is a unique source of comfort and support. I am so sorry I haven’t gotten a tile or drawing to you. My schedule exploded last week and is just beginning to calm down. I would still love to send a tile if it’s not too late. If it is, I will do something else. Please let me know and enjoy the conference – the laughter and the tears – it’s all good for the soul. xoxoxo

    • Mommy and Daddy says:

      I agree with every word you just said. I just wish we were all getting together with a cure for these kids, I really do. That will be the day. No worries about the tile, it is an ongoing project so there is no deadline for tiles. Get me whatever you want drawn whenever it is good for you and i will whip it up and get it to the clinic. Thank you so much for wanting to be a part of it. I have a feeling this project will continue to grow and grow as kids begin to visit the clinic :). Thank you for your sweet words Cathy. xoxo

      • Cathy Johnson says:

        Thanks, Shannon. I will get something to you soon. Have to confer with the fam – they want to help, too! :) xoxo

        • Mommy and Daddy says:

          I know whatever you come up with will be great! Don’t feel rushed, as I said this will be an ongoing growing project :) thanks Cathy.

  4. Ok, i love how you said, “dorker” haha, that made me smile:) I love all that you are doing. I have been thinking about you so much the past week. I know it was hard, I am so sorry. THanks for all you are doing for your sweet Wylder and this amazing clinic, I know Wylder is so proud. love you guys! love ,CHelsea

    • Mommy and Daddy says:

      Dorker is a a famouse word in my family, we all say it! ha ha. I don’t even realize how funny it is because it’s such a habbit. We love you guys and and can’t stop staring at your pictures fromt he Linzer trip … UH-MAZING. xoxo

Speak Your Mind

*