What a cool birthday present.
I came home from California and saw my blog published in Artful Blogging, just in time for my birthday on Sunday.
Now that’s better than a big piece of cake!
Thank you to editor, Jennifer Taylor, and everyone at Artful Blogging for including me in this beautiful publication.
Artful Blogging is sold around here at Barnes and Nobles in the Craft/Hobby section. If you find yourself at the bookstore in the next couple of months, check it out.
I promise you’ll want to put on striped tights and pretty shoes and take pictures of your feet.
Or maybe you’ll be like me when I read my first issue over 3 years ago, and be inspired to start your own blog.
***
My time in California at the CS Family Conference was encouraging and also hard. I met other families with children who are much farther along with the disease. Children with Cockayne Syndrome suffer so much as they rapidly age. It hurt me to look at the older children and contemplate my baby’s future. I experienced a lot of fear and anxiety the first day but the children are so precious. And the support and strength from other families is priceless and I’m thankful we were able to go.
As far as I know, I’m the only one blogging about life with a CS child, so I feel a sense of responsibility to write honestly about this road and to raise awareness as much as I can. I also feel a renewed sense of urgency to raise money for research. I’m going to try and dedicate several days this month to getting some more card sets made for Knox’s Etsy shop.
Here are two of the sweetest little boys in the world. Knox made a new friend who also has Type 2 (severe) Cockayne Syndrome. Knoxy is on the left with his glasses and C. is on the right and is 6 months older than Knox. They look so much alike.
And one more special photo…
Some of you may remember when I posted about a mother from Denmark who has lost two boys to CS. She came to the conference and I got to meet her and she was able to hold Knox. The pictures of her boys online enabled us to get an early diagnosis. I was so grateful to her that I painted her a picture in memory of her boys. It was so wonderful to meet her in person. I still have some post-cards of the painting for sale in Knox’s shop.
Knox was the youngest and smallest kiddo at the conference and he got lots of love from everyone.
And we just keep lovin’ on him as much as we can, every single day.
Thanks for stopping by!
Hi Scarlett,
I dare not imagine how difficult it’s for you to deal with this situation, especially because you know what you will face!
I cannot help you but I think of you during this journey!
I’ll give you lots of compliments for the article.
I love your corner and I think it’s a magic place!
(I hope I’ve written right in English!)
Have a good weekend.
Good luck.
Anna
Lots of prayers for you on your journey with Knox. I can’t imagine the road you are all travelling. Live day-to-day, enjoying the little things.
Congratulations on your blog reveal in Artful Blogging! I’m sure that will help your cause. Happy Birthday to you also.
You are in my thoughts and prayers often. Congrats on your article in Artful Blogging, who knows how much more exposure this will give you in helping others and assisting in raising funds for CS research. We never know what doors will be opened or by what means as we journey through life.
Enjoy your special day!
I’m so thankful you go to go to California. How precious that the woman from Denmark came so far. I’m buying my copy of Artful Blogging today and yes,
Happy Birthday to You tomorrow !!!!
Love you so big !
What a tremendous blessing for you and Knox to have met so many wonderful people with a shared passion. You are a rare and special person, Scarlett, and I have zero doubt that God has a plan for you to reach many others who are going through this most unfortunate disease with their precious ones. Congrats, also, on being in the Artful Blogging Magazine. You deserve it and I am extraordinarily happy for you!
Your blog in the picture in ‘ Artful Blogging’, wow, so well deserved!!!
Wish you a very happy birthday!!!!
Glad you could go to a conference like this and meet such wonderful people!
How cool is that! And Happy Birthday! I knew it was coming but forgot anyway. I am so glad you got to take your trip and make new friends and get support and also see the older children. Knox won’t remember, but the rest of you will never forget! One day at a time and you are handling things so well!
So happy you got your blogged published! So proud of you in so many ways! You are so talented, a wonderful mother and wife, a great friend to me, and on top of that you are taking time to get healthy! Hope you know that I admire you and love you and your family! I hate this journey we are on but I am so glad I have you along to help along the way!
Stacy
LOVE these precious photos! So glad y’all had a fantastic time in California! 🙂
How precious are those kidlets…My heart goes out to you Scarlett…I am glad you had a good experience in California…and Congrats on the magazine article!!! that is so great!!! have a very Happy Birthday my friend…may your birthday be full of family, fun & love…
(((HUGS))))
I am so happy you went and met other families. I believe you sharing your voice and Knox’s journey will help others~ This disease is wretched…I am so sorry for Knox, you n’ your family, and all who suffer with this diagnosis. Your article is beautiful and I so hope it can help make a change in the world~ Awareness is huge and such an important hurdle~ I hope n’ pray there is research and a cure! xo
What a precious time it must have been for you to be with the few families who really know what you’re going through. We love you and your precious family. Congratulations on getting published. What an honor.
Congratulations to you on being published and happy birthday too!
I so hope the CS family conference helped you. Beautiful photos of your dear little boy 🙂
x
@Anna –So glad you came by, I love for everyone to see the photos! And thank you so much about the blog, I’m glad we’ve connected through blogging too! 🙂
@Connie–Yep, the little things have become precious to me now and I really hope the article can raise more awareness. Thank you so much for your visit, always appreciate your comments. 🙂
@Renee –Thank you! I talk about Knox and CS in the article so I do hope it will lead to more exposure for the shop and research. Thanks for the kind words, Renee! 🙂
@Jeana –Love you too sweet friend, hope to see you soon!
@Dee –Thank you so much, Dee. I hope you’re right and I’m waiting to see how His plan unfolds. It’s hard to see ‘blessing’ in the plan right now, but I’m on the watch for it. Thanks so much for your kind words!
@Anneke –Thank you! I appreciate it so much about the blog article. Thank you for stopping by!
@Floy–Oh, Floy, some days I sure don’t handle things well but I’m glad I come across like I am! 🙂 It’s hard but I needed that conference, even though it was difficult at times. Thanks so much, love you!
@Stacy –Love you so much and feel like I’ve known you for years! What would we do without each other to lean on? So grateful I know you and your family, talk to you soon!
@L. N. –Thanks for taking the time to see the photos, I’m glad you liked them!
@Linda–It was a good birthday, thank you, I got to spend the night with my sweet grandmother and then out to eat with family (ravioli…yummmmm) Thank so much, always appreciate your visit!
@Ellen –Thank you! I am super happy that I was given the opportunity to share about CS in the article, it makes me feel like I’m doing just a little bit more for Knox. You know this one has a lot of meaning for me! I’ll be over to visit you soon!
@Noel –Hey friend, thanks for taking the time to leave me a comment, I appreciate it sooooo much. Love you all!
@Joanna Urbani –Thank you, I’m glad you liked the photos…I never know just what photos people will enjoy so I pick my favorites and hope for the best. I appreciate your sweet comment, thank you so much!
Happy Birthday Scarlett Dear. My daughters birthday is today.
Congratulations on your being published in Artful Blogging. That is the magazine that prompted me to be brave and begin my blog so many years ago. I am grateful for your honesty about being part of the CS convention. Nothing is easy all the time. You are a brave and wonderful woman and I am thankful I found your blog. Blessings…
Hi Scarlett – I’m so pleased the San Diego conference became a place of comfort for you – this is a lovely post .. the words are beautiful. How lovely to see the boys together and for your Danish friend to be able to hold Knox …
Interesting that you’re the only one blogging about CS – and as you say it helps bring that awareness to others in the world about the beauty, yet heart-break, you are experiencing.
Wonderful to have your blog featured in Artful blogging – that is such encouraging news … and so deserved …
I hope you had a wonderful birthday last weekend … with many thoughts – Hilary
Wow! Congrats to you on the article being published – love that pic of S in the magazine in her “Jane” dress. And what sweet pictures from CA. To be with people who have walked and are still walking down the same path has to be tremendously comforting. We don’t know your pain in the same way, but we pray for you all. Happy Belated Birthday!
S-
Congratulations on Artful Blogging!
Happy Belated Birthday. 🙂
It sounds like the conference was a great experience. I love the pictures!
Hi, Scarlett…I read your lovely article in Artful Blogging today. So glad I stopped by- your art is so, so inspiring. I’m looking forward to reading more.
Congratulations on your article! Wish I could get that magazine in the stores here! And thanks for sharing about Knox. He is such a sweet boy. You guys are still in my paryers and I wish you all the best! 🙂
oh dear, I am behind as well. I am sooooo excited for you being published in Artful Blogging. I have secretly always wanted to make it in there…ooops, secrets out!
I am going to actively start blogging again next week, and checking in more as well. I need to get kids off to school first. I have a couple huge posts coming and I am really excited about some art adventures starting this fall. ‘
How wonderful for you to go to that conference. I know you’re going through so much. You are so strong. And soon soon soon I am buying one of your pieces for CS!
Congrats on the Artful Blogging feature! Well deserved. Although it was very hard for you to see the children in more advanced stages of CS, I am glad that you went to the conference and connected with the other families. I hope your blog inspires other CS families.