March 26, 2011

Two years later

It's hard to believe that it was two years ago today that we were told that our sweet little girl would be born with Spina Bifida. What a dark and scary day that was.

If only they could have told me that this sweet face was the face of our precious daughter

If only they could have told me that she would have the most infectious laugh ever

If only they could have told me that my heart would melt every time I heard her sweet voice say "hi" or "mama"

If only they could have told me that her smile would light up any room

If only they could have told me that she would be the bravest, happiest and most loved little girl around

Then maybe, just maybe those last few months before getting to meet her wouldn't have been so difficult. Sadly, they didn't tell us those things, but guess what - that's okay because they are ALL TRUE!

I don't think I will ever forget March 26, 2009 and what was told to us on that day. That day changed our lives forever. But truly, our new life began on July 29, 2009 when Annabelle was born.

I am writing this post less for me but for the new parents who have recently gotten a diagnosis of Spina Bifida for their baby. I write this as a testament that what feels like some of your darkest days will eventually become a distant memory once your sweet baby is born. No Doctor can truly tell you what your child will or will not do - they are writing their own story and it will beautifully unfold with your love and support. Having a child with "extras" is hard, but honestly parenting in general is hard. Never give up and continue to fight the good fight! Be your child's advocate - you know them better than anyone else. Some days might be difficult but your rewards are endless.

I know these words above are sometimes easier said (written) than lived, but they are true and they are important. Annabelle is a blessing and we are all so thankful for her. It was a rocky start but worth every moment of fear and sadness to experience the great joy she brings us each day. She has taught us all so much.

Last night I reread last years "1 year Diagnosis Day post". The pain seems different, still so fresh. That isn't the case today. I guess it's true that time heals all wounds. I'm so thankful for that. March has been an extra month the last two years - not this year. Click HERE to see some of our families most memorable moments in Mach 2011.

I'll leave you with a prayer and this beautiful song:

Dear Lord, I pray that all families whose sweet child is diagnosed with Spina Bifida and are repeatedly offered termination as an option that they are some how guided to see that their child can have a happy and productive life. I pray that they will find other families like ours and seek out the support that they will need to walk this journey. I pray that each year I will grow stronger and will be guided by you to continue to make a difference not only in my families life but in the lives of others who are faced with difficult days.

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 :-)