Wednesday, July 2, 2008

These little wonders





I cannot believe some stressed out, bitter, unhappy women hacked into my blog yesterday and left that post. Very rude, don't you think? No matter, I am back. The real me. Wait, was that the real me? No, I think not. Just one of my multiple personalities that shows up now and again. My apologies to those who chose to suffer through it. My thanks to you who offered your kind words of support and understanding. New day today and I must say it was much, much better. Started with the extremely early swim lessons, followed by a Doctors appointment for Zoey and then ...... off to the beach! I cannot believe that the beach is a mere 30 minute drive and we hardly go, ever. We had such a great time. Jake boogie boarded almost the entire time. Joe just had a blast digging and swimming and socializing. Me and Zoey, well we just hung back and enjoyed the moments. A far cry from where we were this time last year and believe me I thought about that a lot today. How incredibly lucky I felt to be sitting together enjoying the warmth of the sunlight. Well, luck actually, had nothing to do with it and today it was so obvious that our thanks at being able to do what we were doing, needed to go straight to God. So thank you God, for the gift of today. I seriously think I had a smile on my face the entire day. Just watching all the precious kids soaking up life. Carefree. One of those moments you wish you could freeze. Zoey was an angel. She was so tired. Not a wink of sleep all day and her teeth are working over time to break through, but no complaints from her. The only semi difficult part of the day was g-tube feeding her. G-tubes and sand don't mix really well together, but we managed. We more then managed. She nursed for me also, so I felt she was well hydrated. As I have mentioned before, Topamax inhibits the bodies ability to sweat and it's important to make sure they are cool and hydrated. We have made a date with the "Carpenteria Beach Crew" to join them every Wednesday and we sure are glad they have invited us to join them. They are a bunch of really darling kids with parents and grandparents to match! We could not have asked for a more gorgeous day. Just the right temperature. Not too hot and just enough breeze. It was a perfect day all around. Tomorrow is another big day. Mark's birthday AND another day off for him. However, it comes at a cost. They need him to work on the 4th instead. Not his choice, just the way it goes. So we will make the most of tomorrow and will miss him while we are watching fireworks on Friday. Today was pure joy. To be at the beach doing regular, normal stuff was priceless. To watch the faces of the boys as they just did regular, normal boy stuff was, incredible. To hold my miracle child in my arms, as we watched the beautiful Pacific Ocean waves roll in and back out from shore was, magical. To be able to envision a day, when I will watch my miracle child, herself playing and carefree on the beach is, beyond words. I have always stopped just short of envisioning Zoey at certain stages in her life but not today. Today I was able to envision my little wonder full of life, soaking up all that the world has waiting for her and that my friends is what I call, blessed.

12 comments:

Kelly said...

Looks like you had a blast at the beach. I see some little familiar faces, there. So good to see Zoey together with "the crew."

just jean said...

Ahhh...just a normal day that was full of peace and happiness! Is there anything better? maybe, but not much better! What a gift it is to be truly IN the moment....just noticing all the joy and pleasure of a beautiful day in God's creation. I believe that is what God wants of us....to frolic and to find awe in the simple yet amazing gifts He has created for us, just as children do. I'm so glad that your journey has led you to this day and this beauty of life. We faithful blog readers have shared your journey and insights. (at least, virtually) May you have many more days of peace and joy!
just jean

Dawson said...

BRAVO on having such a wonderful day. It looks like you guys had an absolute blast and what a beautiful little girl she is!!!

Our prayer is for more and more days just like that one

The Bliss Family said...

Hi. Thanks for stopping by our blog. It's amazing how many wonderful blogs I've come across & how many wonderful families I keep in contact with now. All thanks to the blogging world. How old is Miss Zoey?

Lisa

Russ Mitchell said...

Hello Heather and everyone,

My name is Russ Mitchell. I'm a writer for Conde Nast Portfolio business magazine (portfolio.com)

Conde Nast also publishes the New Yorker, Vanity Fair, Vogue, GQ, etc.

I'm working on a story about infantile spasms and the cost of high-dose prednisolone (low) vs. the cost of Acthar Gel (very high.)

I'm fairly familiar by now with stories surrounding ACTH, but I'm looking for parents with direct experience with high-dose prednisolone. I see that a woman named Jo posts here about her daughter Sheena. Could you get in touch with me? Also, anyone else using high-dose prednisolone?

I'm referring in my story to Johns Hopkins Children's Center, which has stopped using ACTH, not because it doesn't work (it's probably the most effective drug out there, on average) but because of the price. In their experience, though, high-dose predlisolone works just as well, at a tiny fraction of the cost.

If Jo or any others could contact me at the email address below, I'd very much appreciate it.

Thanks!
Russ Mitchell
russ_mitchell @ condenast.com

Kele said...

Oh Heather..I'm so glad you had a better day yesterday! I know about the multiple personalities, but we are entitled to those 'outlets'. Thanks for checking in on Presley and for your kind words. You couldn't be more right, she is my motivation and inspiration. I was just thinking today that I never thought someone so tiny and so young, could ever be a hero to me, but Presley is absolutely 'my hero'. I know you understand as you have your own hero in Zoey!

Forever Greatful to be a Wife and Mommie said...

Clicked over from Ivey's site ... Your family is so beautiful!

Reagan Leigh said...

I'm so glad you had a nice relaxing day in the sun. Here's to a whole summer filled with relaxing days like that...you, Zoey, and your entire family deserve it!

Bluebelle said...

Looks like everyone was having a California sunshine day at the beach. Good for you - hope your summer is filled with them

Love from the east coast.....

Tammy and Parker said...

I can't imagine anyone who deserved such a great day more.

And I tend to have those split personality moments too. :)

amy flege said...

Looks like such a wonderful day!! Your Zoey is so cute!

Mary said...

That is the cutest swim suit! A happy belated birthday to Mark!