Wow, thank you all for your supportive comments. This blog experience... it's really quite something, isn't it? I sometimes just marvel at the world-wide conversation we are having, and relationship we have built! For those of you who are regular commenters, thank you for doing so. For those of you that lurk, thank you for simply being here. I know I wish more people would comment every day; heck, you're thinking your comments anyway, why not just write them? I hope it isn't that you are all thinking bad things and just keeping it to yourselves! If that were the case, thank you for at least doing that! LOL. While that may be the case for a few people, (you can't please everyone and you shouldn't try), I bet many of you read every day, have a thought, keep it inside, and then move on. Maybe just once in a while (like at least monthly if not weekly) you share your thoughts with the community?
See, there I go again, never satisfied... just couldn't leave it alone... I guess I'll never change, why am I asking anyone else to? :P I'm just playin'.
Anyhow, how do I top the past two posts? You can't hit a home run every time you're at bat. I feel like I don't have anything profound to share today. It was a good day in the office; had a profoundly deep coaching call with a client today; I am so honored to be a coach. To walk beside someone through their own muck, and to assist them in seeing past their blind spots... doesn't matter the area of life. To assist and be of service like that... that's a heavenly good way to earn a living. I am so grateful and thankful to earn money by contributing to others. One of the things I struggled with at the seminar was paying attention during the investment portions. It is important to understand and leverage investment vehicles if you really want to be financially free, but earning money off my money just doesn't give me the same warm fuzzies...
However, if I want to accomplish all that is on my radar, it best suits me to get over that. The greater vision is more important. I dream of getting to a point through investments where the dividends to one portfolio could furnish bandages to families in need. THAT would be WORTH paying attention to investments, wouldn't it? For me, money gives you the chance to bless TWICE... you can bless others while earning money, THEN you can bless a completely different group with the money you earned blessing the first group! That is the possibility of money.
That's all well and good, but I think the most important and relevant info I can share today is about Patrice Williams' EB Auction! You should go see all the wonderful things she is auctioning off over the next 4 days. All the money goes to DebRA, so it's for a good cause! If you see something you like, BID ON IT! We are all in this TOGETHER, folks. We are an unwilling band of brothers and sisters, but some of us are taking EB on over and above just treating it. That, believe me, is plenty. I am in awe of how much work Patrice puts in ON TOP OF having a sweet little (almost) 2 year old with EB. She is a MACHINE! Rock on, Patrice. You are leading the way to a cure as well, and I am proud to be by your side. PRETTY PLEASE, go on over and bid on some items for the auction!
God night.
booooooring.... hahaha just kidding
ReplyDeletebut well, life can't be so exciting EVERY day, we just wouldn't be able to handle it!!
Yeah Patrice is so active, unbelievable! And she is sort of the "spiritual founder" of this community: many learned about Bella, Tripp, and many others through Jonah :-). I like the motto used by Debra Spain on Intl. rare diseases day:
"ALONE, WE ARE RARE; TOGETHER, WE ARE STRONG"
I also like the motto "THINK GLOBALLY, ACT LOCALLY" Every small thing each of us does as individual, becomes huge when there are hundreds or thousands of us doing it.
Bella will keep us together and strong until we kick EB off the face of earth.
Love and hugs,
juana
Proud member of DEBRA Spain
And this lurker says...have a good day! I've been looking forward to the auction...some good stuff there!
ReplyDeleteMorning!! Did you see the OC Register today??? 30 million dollar gift given to CHOC for the expansion project. Wow!!!! There are so many giving wonderful people in this world. By the way, how is Ali doing in school, I love the Ali updates!!! Have a great day!
ReplyDeleteLara
This family pic is one of my favorites! Adorable. When Cory wears that bib we tell her that was Bella's bib! Ang's pampered chef stuff should arrive soon! The rest came today.
ReplyDeleteHave a great day today.
Much Love! Amanda
----->Frequent lurker, sometimes commenter, checking in! Funny how life works, I often stopped by to check on Bella, pray for her, and cheer on your family, but often ended up being so inspired and encouraged by your words!
ReplyDeleteThank you for continuing to share your journey! I have been trying to (and will continue to) encourage others to text their donation.
God bless your efforts to help fund a cure for this horrific disease.
Hi, Tim and family...
ReplyDeleteI'm still here, reading every day. I haven't commented in a while because life has just been extra busy recently. But I'm taking a minute on a chilly, rainy evening to let you know that I continue to cheer you on in your efforts to raise awareness - and funds - to cure this horrid disease. The texting idea is great and I have already taken advantage of that easy way to give.
Thanks for continuing to share your journey and your family with us. Please don't ever worry about being "boring". I enjoy reading about everyday life for your family, especially the tales of the wonderfully effervescent Miss Ali! And I'm sure others would agree that we will never tire of seeing the pictures of your beautiful Bella, the reason we all are here in the first place.
Blessings to you all, sweet family!
Susan
A friend in NC
I'm a daily reader. Have been since Bella was diagnosed with left ventricular hypertrophy and you thought one of her meds was causing it. Anyway, that was a loooong time ago. I've been here, literally, EVERY SINGLE DAY since then. Know what? You are absolutely right. Certainly I *think something* as I read your writing. Why not jot that *something* down? Such a good point.
ReplyDeleteI haven't really read today's post, I read yesterday's and skimmed today's to see if indeed I missed it this morning. So, this comment is on yesterday's post. Wow! That fella has some courage! He sure is dedicated! He makes sense (as always). You're very "relatable" (I know, I know..it's not a word, but it's MY word :-) )
Oh, one other thing I was thinking is, "this guy's gonna do it! He's really gonna reach his goal. I hope they use the money wisely and all Tim's efforts aren't in vain. They have to use it to refine that darned BMT protocol."
So, I'm off to see if Daylon's mommy has posted. From there my routine is to move on to Courtney and Tripp's blog, to Patrice and Jonah's blog, check in and see if Charlie has an update. He's doing marvelous, isn't he?! Then I'll stop by Molnycke's website to check out a product I'm unclear about. I care for someone with EB, and I'm not real sure about a new product we received............so, my thoughts go all over the place, so bear with me. It's part of the de-lurking. With practice, I'll get better at posting.
Ann
you are so boring :)
ReplyDeletebut that is GOOD!
Boring? Not so much! :)
ReplyDeleteLOVE this family picture - I think it captures each of you just perfectly.
Hope you have a wonderful Friday! Tell Ang and Ali the Team from TX says hello!
Love,
Laura
I love this family picture. Gorgeous! Ang's face is lit up so beautifully by the joy and love she has for her little family.
ReplyDeleteThis post is inspirational too...give yourself some credit!! You are NEVER boring!
Lots of Love,
Amber, Craig, Malorie, and Liam
The McLaughlin Family, CA