Shark Week

I can’t believe Shark week has come to an end. 

You know what that means,

now we can get back in the pool …

Caannnyonnn Ballll!!

24 22 11

Shark Week will never be the same without you Wylder James, but I love remembering all our chats about the fabulous-ness, scary-ness and awesome-ness of the creature. I know you “get it”.  Love and miss you littlest one. xoxo


  1. Cathy Johnson says:

    I always think of you, Steven and Wylder whenever I see ANYTHING about Shark Week. I love that getting to know you through your blog has provided me with so many triggers that make me think of Wylder. I love picturing his sweet face and I love the reminders to have hope always. :) xoxoxo

    • Mommy and Daddy says:

      I do love that about blogs Cathy. I feel the same about all our Niemann Pick families and all we learn about them through their blogs. I too have lots of “triggers” to remind me of each beautiful baby because their families have share them on their blogs. I am grateful for our web-family, thanks for thinking of wylder. xoxo

  2. I thought of you guys everytime the shark week commercials came on-wishing Wylder was there to watch it with you too-xoxo

    • Mommy and Daddy says:

      Thank you Chelsea, I know it was such a hard weekend for your family too. Sending you our love. xoxo

  3. Saskia Laue says:


    I know you guys don’t know me but your story is a great inspiration for any mother actually anybody at all.
    Nothing can ever take away your loss or pain and I will never find the right words to say to you. Your story and your sontruly have inspired me to be a better person.
    I came across your website though Quinns’ blog and wanted to let you know that your son’s story has touched me very much.
    I will think of your sons often and let him live through our thoughts.
    In general way to many people tend to create their own problems instead of just living life and enjoying it, your blog posts have tought me not to worry as much about every little thing but just to enjoy and be happy.
    I hope dearly that you guys find a cure for NPA or any other rare disease, I think it’s so unfair that not enough reasearch is done for rare disease, just because it is not as profitable for many big companies.

    Best wishes from Germany :-)

    • Mommy and Daddy says:

      Thank you so much Saskia, the number of people that show love and support for all our NPA families through the web is such an incredible light and strength for all of our families. Thank you for remembering always. xoxo

Speak Your Mind