March 23, 2011

A joy-filled life!

I can't even believe it's already been 3 weeks since our wonderful vacation (pictures to come VERY soon - I hope) that was sadly cut short due to Annabelle getting another UTI. However, in typical Annabelle fashion she bounced right back after all of the San Diego drama and thankfully the UTI cleared after the 10 day course of antibiotics.

So what have we been up to these last few weeks? Well, we've been plugging along with our normal routine:

Physical Therapy: 2 times per week
Occupational Therapy: 1 time a week
Speech Therapy: 2 times per week

Of course, in between all of these therapies we have Kindergarten (Jack) and preschool (Benjamin) drop off and pick up, Martial arts and T-ball practice. Not to mention homework (for Jack) and trying to fit in some good old fashioned fun/play time. Needless to say I have been running on empty and sadly not doing the best job at hiding it. I am trying to get to bed earlier so that I am better rested for the challenges of the next day, hence the reason I haven't posted our super awesome vacation pictures. However, I find that even when I get to to bed I struggle to "turn it off". So many thoughts and worries constantly go through my head. I wish this wasn't the case but it is. I worry for my sweet Annabelle. I worry that her constant UTI's and 4 previous shunt malfunctions have held her back from progressing like she could have. I worry that she is falling behind in a world where she is already behind. This mommy's heart hurts for her sweet baby and the unknowns of her future.

I was telling a friend this past weekend that I sometimes try to avoid the typical mom conversations because of the uncomfortable reminders of Annabelle's current limitations. However, if you want to see friends and feel normal that isn't always possible. I had been having a great time last week with some friends when the talk turned to kids - as it always does. We all have at least two, but most have three who were there that night. We were talking about how hard that first year with a new baby is and one mom said "It's so much easier once they start to walk and are eating solid foods". Although I KNOW (from past experience) this is completely true, my heart sank a bit - considering the fact that my daughter isn't walking and eating food is not her strong suit. It was no big deal really but just one of those little moments when you realize how different your life is from your circle of friends. Then you go home and check in online with all your buddies across the country who have Spina Bifida and OMG we were not kidding when we got shirts printed up with the logo REDEFINING Spina Bifida! These kids are rock stars!!! So many of Annabelle's peers are walking - with and without assistance! Theses kids who are just months older than Annabelle and have become our dearest friends are doing A-M-A-Z-I-N-G! I'm not kidding, really super great. Of course you know I am over the moon excited for them and their families and please do not think I am anything but that, but if we are being totally honest here, it is a little hard to see sometimes. It's hard to see these kids progressing so well and feeling like Annabelle is not. I am often reminded from her therapist that you can't compare the kids because they are all different. I know this, but it's hard sometimes. But the reality is that Annabelle IS progressing, but I have just been stressing and obsessing over it so much I have been blinded by all the A-M-A-Z-I-N-G things our girl is doing.

So, all of this was to say that I have been a little too worried lately, which I know is natural and understandable but honestly it's totally unproductive. Thankfully, Annabelle does NOT spend her nights feeling sad about what she can't do. She is happy as ever and is living life to the fullest. Also, it appears that Annabelle has a few new tricks up her sleeve that she had been waiting to show us and she did just that this past weekend. Check out these video clips below.

Check out our girl - such a strong, big girl!

She actually took her hands off the walker about 4 times on Sunday and then again tonight. She has really been enjoying standing for longer periods of time and is doing better with the walker. This is a loaner walker we were given to use from our PT while we wait (and wait, and wait) for ours to arrive. We are so thankful to have this to use at home.

Here she is doing some floor dancing - lots of tushie shaking and brace clicking.

*I need to put the disclaimer out that is not the normal music we listen to at home. I allowed Jack to be in charge of the music on Sunday afternoon so of course he chose the Jack and Annabelle personalized CD as his first two choices. Thank goodness we were having so much fun dancing I was able to tune out the silly songs.

I would be lying if I said that just because she had a good day on Sunday that all my worries are gone. Obviously, that's not true. But it was an encouraging day that reminded us that Annabelle will do what Annabelle will do in her own time. She is not running a race, she is living her life. It's a great reminder about the life we want to live and the life the Lord wants for us. I read (a version of) this today and it really hit home.

"Jesus lived and died so that we can experience abundant life. Jesus did not come so that we can merely survive life. God's plan is for us to experience joy and peace - no matter what life holds."

John 10:10 clearly states the promise of God, "I have come that they may have life, and that they may have it more abundantly." In this verse, "abundant" literally means "going beyond; full or exuberant." In other words, an abundant life is a life filled with joy. Even in the midst of a joy-less world, we can live a joy-filled life for one simple reason - God is in control and because He is in control, we are promised, "the cheerful heart has a continual feast" (Proverbs 15:15 NIV). Life should be an ongoing celebration.

I wish each of you a joy-filled life, no matter what life holds for you this week or next for that matter. Lets help each other to live the life we were promised by the Lord.

As always, thank you for checking in on us. It means so much to know you guys are out there and that you care. Oh and I have to mention and privately squeal with delight that I just hit 50 followers and although I am not a hard-core blogger I was pretty excited and honored. I had been at 49 for a while and was SO excited to see that I had a new follower this week - yeah! It's the little things :-)


  1. oh my word that tush shake is so cute! and what's wrong with the music? I like it :)

    I have been reading a book called 1000 Gifts, and while i know you probably don't have time to read books that often anymore (I've been reading it since Christmas to be honest), I think you would really get a lot out of it. It talks about how fear and worry can be a joy stealer and really get in the way of us living the life that God wants us to live. The whole premise of the book is about being thankful and finding small gifts in the everyday that is all around us. And she writes from a perspective of someone who has been through a lot, loss of a child, a sister, many challenges. It's a wonderfully encouraging book. When you wrote that quote and verse up top it just reminded me to mention it to you.

    And as your fellow night owl, may I just say that after you give it some time, your body learns to start shutting down at night and allowing yourself to go to bed earlier and earlier. I know you have more to worry about than I do, but i have really been working hard at getting myself to bed and after a few weeks now my body craves it and I can usually fall asleep by 10:30 now with no problem.

  2. OH, how badly I wish you lived closer, so our little girls could shake their tushies together! And I so wish I would have Maddie with me when we finally meet at Conference...we have SO many hugs saved up for you guys, and I'm sad she'll miss it. Annabelle is doing SO well! She let go of that walker like it was the most natural thing in the world! And, I know how hard it is comparing...It wasn't that long ago that you reminded me that each of our kids are someone else's Rockstars...and each one is inspiring another. That made all the difference to me back then, and I hope you remeber it too. Annabelle is amazing...and you are amazing too! Much love sweet friend!

  3. While I can not even begin to compare to the worries that you go through, or even try to imagine them, I need to tell you that your posts are very inspiring to other moms with their own unique worries. Seeing Annabelle in her videos and getting your updates and reminders about her love of life really helps a lot of people - me very much so! Love you tons! xoxo

  4. Oh man, she is CUTE CUTE CUTE!!! That dancing video is too much! I was shakin it with her!

    Here's what I've learned. And I know you know this, but then sometimes you *really know* it. Just because they take longer to do it doesn't mean they aren't going to do it. I know it's so frustrating to wait, but remember--she is using her walker before Nate started using his walker. He was over 2 years old before he started using it at all. I really, really understand the frustration and worry, but she has all the time in the world! 20 years from now, it won't matter how many months it takes her to do this or that, because she's going to be happy and doing great.

    I feel you on all the running around and not being able to shut of your brain! If you figure that one out, let me know.

  5. How CUTE is she!?! I love her dancing! And to see her standing up and letting go!! Priceless. She is amazing! With the amount of stumbling blocks she's had put in her way - all her shunt battles and UTI's - it is truly AMAZING she is doing this well! Do you realize that!? It's crazy!! And Colleen is right - it's hard to wait now - but in 5, 10. 20 years it won't matter one bit! She won't care at all when she started walking (and you can tell her she was dancing before she was walking ;) how cute is that!). I miss you guys and can't wait for the chance to see you again! I'm so overwhelmed with trying to make it to the conference (raising money etc) but I want it SO SO BAD! I want to see you and hug my sweet Belle! And Jet is ready for a summer romance. ;) lol. Love you all so much! Keep your chin up - you have an amazing family and wonderful purpos

  6. I love it, I love it, I love watching her dance, she really does loves music. She is so cute & amazing, standing there & letting go, Wow, she is getting so strong. And you my sweet girl are such an AMAZING Mom, I am so proud of you! Just keep going to bed at the same time & your body & mind will adjust and sleep will come. I Love so Much

  7. Annabelle is such a cutied pie, and you are obviously doing AWESOME with her! (and your others too of course :) ) I know it is so hard not to compare, but our kids are all so special and unique, we really only hurt them and ourselfs when we compare, and I have to remind myself of that daily!

    Keep your faith, NEVER forget that God has a special plan for each of you, and find the joys in each day!

    And woo hoo on 50 followers... I have been blogging for a long time and still don't have that many :) Dosen't mean I don't still love to write and share, but I know what you mean about having followers :)