Summer Finale

I miss this sunset....




Our last hoorah of the summer was a short trip back to Destin. We go there almost every year, and it never gets old. The beach, the salty air, the food, the sunsets...we love it. It's an easy, relaxing vacation, that's big fun, low cost, and pretty much stress free.



The view from our balcony



The view from my chair



What I would give to have either view right now...Sigh.

We stayed at Waterscape this year, and it was amazing. It had beautiful pool areas, a lazy river, an awesome splash park for the littlest bugs, and a private beach access just steps from our condo. It was perfect.






















I especially loved watching the kids this year...So much fun.




Last year was an entirely different trip because Maddie wasn't even crawling. This year, she had places to go...and she went!




This year, Mason finally floated down the river by himself.



While Maddie was perfectly content in her Daddy's arms...



And the two of them played together for hours in the sand...






It was a beautiful way to end a perfect summer...



till next year...

Been Busy.

I don't know how some of you do it. You know who you are...Your house is always clean and ready for any unexpected guests,your garden is beautiful and weed-free, your kids are always perfectly put together, you are never late for carpool, you cook amazing, healthy meals every night for your family, you find time for manicures, date night, and blogging.

OK...so now that I've read that, I realize I just combined about 8 friends into one incredible person that I want to be. Truth be told, I'm sure none of us have it all together, and spend way too much energy wishing we did. Lately I've found myself in that state of constant juggling...and although the big picture may suggest that all balls are in the air and accounted for, I know better. There are definitely some things falling through the cracks. And I am just as guilty as the next person of beating myself up over what's been neglected, and convincing myself that everyone else is getting it done, and making it look easy.

Take this blog, for example...One look at the banner can tell you I've been busy. My kids are still dressed like eskimos (and we live in New Orleans). I've been meaning to change those pictures for months...and it just isn't happening. I used to average about 5 posts a month on here...and I'm looking at this past year and I haven't done more than 3 since February. I only posted once last month, and this post will be my 2nd this month...If there's anyone out there still reading....Sorry. Been busy.

And it's not that things haven't been good....they have. I'm just so consumed with keeping up, that sometimes I don't slow down long enough to realize how good they've been. That's been such a struggle for me lately...just letting myself relax, and enjoy the moment, without worrying too much about what comes next. I've had this conversation with Michele (PT) alot lately. Maddie is doing so much more than we ever hoped for...the progress has been absolutely amazing. And yet...I'm still waiting for the other shoe to drop. Why do we do this to ourselves? I know I'm not the only one. Instead of enjoying what is going so right, we shift our focus to what is still going wrong...or what may go wrong eventually. It's not fair to ourselves, our families, and especially our kids....Because so much is going right.

Click HERE for video.

Her newest trick...Walking on grass. If you know anything about SB, sensory input, or the state of my backyard, you know what a HUGE feat this is. And after this clip ended, she proceeded to climb that ladder by herself.

All of her therapies are going so well...including hippotherapy. She is no longer afraid of the horse. In fact she seems to enjoy it alot, and the instructors are thrilled with her strength and stability. She is definitely a rockstar at school. She acts like she owns the place when we walk in...It's hilarious. There's still a few tears when I leave, but she's all smiles when I pick her up, and she chats about her day the whole way home. She. is. doing. awesome. I need to remind myself this daily, and try not to stress about what lies ahead.






Mason, is thrilled to be back in school! He loves the teachers, the kids, the routine, and all the new activities this year. And he loves seeing Maddie there. he told me last week that he saw her on the playgound and gave her a hug. Be still my heart. What I would give to be able to watch the two of them there...
My little guy is smart and funny...and I adore him. He is also the most strong-willed child I have ever seen. Ever. We've had some definite struggles lately over everything from food, to clothing, to a recent haircut....(a nightmare I will never re-live here or anywhere else) I know this will serve him well one day, but geez...It's been tough.




So all in all...We've been busy, but good. Lots happening all around us, and sometimes it's tough to keep up, but I can't complain. When all the extra stuff falls through the cracks, the things that matter most remain.

Firsts

Well...We made it. I'm pretty sure I had a tougher time than either of my little people, but that wasn't totally unexpected. I knew this was gonna be hard. I've been stressing about it for awhile now, and probably for no reason. I knew Mason would be fine... He had his new McQueen backpack, and he was thrilled to be going back to school. But Maddie...I just wasn't sure.

She woke up super excited for the first day of school...Chatting away and happy as could be. This continued through breakfast, the entire car ride, and the walk through the hallways. It ended at the doorway of her classroom. Then the tears started...for both of us. Who am I kidding...my tears started way before that.
I passed her to her teacher, and promised I'd see her soon. I walked away while hearing her whimper "I want my Mommy"...longest. walk. ever.

I knew she'd be fine, but that doesn't make walking away any easier. I called the school a little while later, just to check in, and of course, she was fine...happy as could be. It's funny how hearing that she was fine brought on new tears...she was doing great without me. My baby's growing up. I remember feeling this way on Mason's first day too...It's just this sudden realization that they're not babies anymore, and although I am so proud of these amazing little people, sometimes knowing how quickly they grow up can take my breath away.







loveys? check.

From 2011-09-06

I may not be ready, but I'm pretty she's been ready all along.



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With the start of school, the end of our first tropical storm and the arrival of our first cool front (thank you GOD), I am starting to feel the shift of the seasons. I am so ready for fall! College football made its return in our home this weekend too...and Thank you LSU for bringing it back in style!! Geaux Tigers!


Maddie's Game Gear





Southern Cutie-Patootie


And finally...my little schoolgirl. Click HERE if reading on FB.

Soccer Mom

It's official....I'm a Soccer Mom.





Mason has always loved kicking the ball around our yard, so we knew he'd love playing soccer. And I think he will...even though the first practice was less than stellar. My little guy is an interesting personality. If he feels comfortable in a situation he will ham it up, talk nonstop, and do whatever it takes to be the center of attention. If he doesn't feel comfortable, he clams up instantly, becomes painfully shy, and can be downright rude in the process. We never see it coming. It's happened at birthday parties of his closest pals, playdates in our own house, and now...the soccer field. Mason is the friendliest kid you could ever meet, but when these moments occur, he can be a tough nut to crack. I'm so glad he has a coach that was willing to make an effort to include him. Mason had been watching from the sidelines, as the kids ran around and played. He stood there with his brand new blue soccer ball, wearing his new shoes and shin guards, and watched sadly as we begged him to join in. The coach had been coaxing him throughout the practice to join them, but then with 10 minutes left to the practice, she kicked her ball his way...Without thinking, he automatically kicked it back and smiled. The ice was finally broken. For the remainder of the practice he chattered on and on, about anything and everything, he ran, played, and had a blast. I am so thankful for those special people who know how to connect with my kids....



Which brings me to Michele...our PT. From day one she connected with Maddie in a way no one else had. She has the ability to motivate her to do things she wouldn't normally do...even when she doesn't feel like it.



She pushes when Maddie needs pushing, she praises when Maddie needs encouragement, and she holds her hand when she feels unsure. We love Michele, and all of the amazing therapists that have become a part of our life.



I attribute Maddie's recent progress to these amazing individuals who treat my daughter as their own, and I thank God every day for bringing them to us. I'm in awe at how far she has come. This time last year, we were still waiting for her to crawl...and now she is doing laps around our house with no help at all. It's incredible!



We have even started going out in public without the walker. She has walked at restaurants, the doctors' offices, church, and the library...and the more we try it, the more comfortable she gets. The most exciting thing for me is that she has finally decided she would rather walk than crawl in our home. It definitely had to be on her terms, and my pushing was not getting us there...so I'm thrilled that it's finally her idea.



Our 2 yr. appointments with Urology and Ortho were last week. Overall, Maddie did really well. Ortho was very happy to see her walking unassisted. The x-ray of her hips looked great, and she is showing no scoliosis...which is awesome. Although we know there are still orthopedic surgeries in her future, we are uncertain what the best age for them will be. Our doctor is in no rush, and seems unconcerned about longterm effects...but we have gotten different opinions from other docs, and we really need wisdom in making the right decisions for her. So please keep this in mind when praying for Maddie. It can be so overwhelming to know that such big decisions are ultimately in our hands...and I hate knowing that I might make the wrong one.

The other realization that we've become increasingly aware of is that mobility may not be Maddie's biggest issue. The urology concerns are mounting, and we feel more confused after meeting with her urologist. It seems some things are almost inevitable. And although I'm not ready to go public with any specifics to my daughter's continence issues, I do realize that this will be our biggest battle.

She and Mason will be starting school on Sept. 6th, and although I'm nervous, I'm so excited for both of them. Till then we'll enjoy what's left of our summer with more pizza nights...



more grits in the morning...


pinkies out!



and more silly faces all around...

The Last Launch

A few weeks ago my 2 neices were in town. My Mom had lots of fun things planned for them while they were visiting, and my kids were eager to hang out every chance we got. One of the days included a trip to the Stennis Space Museum. With the last shuttle launch scheduled for the following week, it seemed like a great opportunity to give the kids a peek at what all of it was really about. (Plus it's late July, and this is Louisiana, so I was all for any indoor/ air-conditioned activities!) Here are a few highlights from our day...


Preparing for Launch...All Systems Go.



We have Liftoff...



Houston we have a problem...Small child climbing on aircraft



Problem resolved...Continue mission.



See her boldy go where no toddler has gone before...

I'm Awesome

If you're seeing this as a note on FB click HERE.




So yep...She's awesome. And she's doing some pretty amazing things these days. Our annual meeting w/ her Early Steps team is this week, and we will be discussing our goals for the next 6 months and year. It's actually harder to set goals for a year from now, when she has learned so much in such a short period of time. This time last year, I had serious doubts that she would ever walk on her own...I was still waiting for her to crawl, and it was agonizing. Her first birthday came and went with no forward motion whatsoever...no army crawling, no scooting, nothing. And here we are, one short year later, watching her walk around the house while the walker sits in my trunk. It's amazing. Absolutely amazing. And I hope I never get used to it...I hope every time I see her take steps I will continue to get goosebumps. I hope I will always recognize a miracle when I see one. I see one now...and she's awesome.

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PS...

We are so excited to be having a yard sale to raise some money for Maddie's therapy costs, and I just want to say Thanks to everyone who has donated items! The sale will be July 23rd, in Slidell. If anyone else has anything they would like to donate, please let me know...and we will be happy to pick it up. Thanks again!!!

California Dreamin'

I've been home for almost 2 weeks, and I still don't know if I have the words to adequately describe such an amazing trip. It was only 4 days, but if felt like forever. It was a first-time meeting, with longtime friends.
It was California...but if felt like home.

I left for Anaheim on Sunday, June 26th...our 12 year Anniversary, and the day after Maddie turned 2. Thankfully, she was finally getting over that stomach bug, and back to her sweet, happy self.




I was nervous the morning I left. So much anticipation over such a long period of time...I was going to the SBA National Conference in Disneyland. I knew I would be learning more about Spina Bifida than I'd ever allowed myself before...and that scared me a little. I'm a big fan of my bubble. It's a happy, comfy, little place, and I am quite content staying in it most of the time. Going to the conference meant I was leaving my bubble, and opening myself up to new information, and I would have to face the possibilities that may be in Maddie's future. This was both exciting and terrifying for me. I think for any parent, the future can be a scary thing. I'm not ready to think of Mason at 13, and what kind of crazy will come with that...So letting myself think of Maddie at 6...at 13...at 17...and beyond, was way overwhelming for me...and I'm still processing all of it.

The trip started with a very early flight out of New Orleans International. Great weather, and some decent gossip magazines made for a smooth, easy flight. We flew into San Fransisco, and then took a MUCH smaller plane into Anaheim. I went with my friend Brittnie..amazing Mama to one of our best buds, Breighton. Her brother lives in the Anaheim area, so we met up with him and his sweet family, for lunch at the Rainforest Cafe.


That night was the opening reception. I was SO excited to see the other SB Mamas that I've "known" for the last two years. One by one, they started to appear...and it was the most incredible thing. It was like a family reunion... We knew each other. We knew each others kids. It's hard to explain the feeling, when you meet someone for the first time, and feel like you've known them forever. It's different from other friendships, because we are bonded to each other by this personal journey that we each found ourselves on. What makes us different, makes us the same. We've got the same hopes, and the same fears...The same things keep us up at night. It was so surreal to finally hug these incredible people, who have inspired me beyond words.







Monday morning started with an early breakfast, and the Plenary Session. The keynote speaker was Dr. Adzick from CHOP. He gave a presentation on the MOMS trial, outlining the specifics of the trial as it progressed, and the findings since it ended. It was fascinating. At lunch we all gathered together at the only place that could seat everyone in our group.



(even this picture didn't fit everyone!)


That evening, everyone in the Babycenter/Blogger/FB communities showed up for a meet-up at the Grand Californian Hotel. Our little group could have had it's own zipcode. What an amazing night!!










Afterwards, drinks and desserts!




Seeing everyone with their families in tow, really made me miss my crew. It had been an exhausting first day, with information overload, some jet lag...and I needed some hugs from my bugs. I called home from the lobby...and was so dissappointed to hear that Mason had 103 fever. Maddie had just started feeling better when I left, and now Mason was sick. I went to bed that night with a million thoughts running through my head.



The next day was an intense schedule of "Ask the Doctor" sessions, and a 3-hour session on Neurogenic Bladder. I learned so much...at times, too much. But I asked the questions I had, and now I have a new perspective to bring to our doctors here. It's amazing when you can step back and look at this with fresh eyes, and the conference was just that.



That night we went to Disneyland. After 2 full days of SB overload, we REALLY needed that night to ourselves. It was SO much fun! We totally got to be kids....without our kids! Of course I missed them terribly while we were there...especially Mason, because I knew how much he'd love it. But there's something to be said for riding rides till your sick, and screaming till your throat hurts. We had a blast! I'll never forget that night.













Wednesday was our last day there. Brittnie and I had to leave the morning session early to catch our flight...Bummer because it was definitely one of the best of the conference. Leaving in the middle of a session meant no big goodbyes, no tearful hugs. We said our goodbyes before it began...and with a little wave, and a promise to keep in touch, we were on our way.


It was an amazing trip...but I was so happy to get home.