An Honor at the Race Track!

How amazing is it that this weekend my Riley's name was put on the roof of a professional race car! It is there with a lot of her friends names that share her diagnosis of Polymicrogyria. This is her rare brain disorder.

True Speed Motorsports race a Porshe GT-3 in the Grand Am Series of racing. They are an incredible supporter of the global PMG Awareness Organization and offered the roof of their car as tribute to these incredible kids and to raise awareness of PMG. What a fantastic thing that we are lucky to be a part of!








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Vacation Bible School 2013

You know your kids are happy about something when they will chant for it! Wednesday morning both girls were chanting "VBS! VBS!" confirming they were having a fantastic week! Yep, my two little Mormon girls loved Vacation Bible School at Faithbridge Baptist Church this past week!


From 9 to noon this Monday thru Friday both girls had an absolute blast! I was really happy they participated and hope to make it an annual tradition! The theme this year was called "Kingdom Rock: Standing Strong for God" and each day they learned about different things that helped them do that. Gods love, family and friends, prayer, Jesus and the Bible were each days focus. All things that you could easily hear at one of our churches. Some things are a little different like the awesome Christian Rock songs (don't worry I already ordered the CD and DVD) but I was happy about the same basic Christian principles based on Bible scriptures and stories that were taught.


Keagan was in the Purple Fox crew with her two darling friends from school, Kyle and Matheson. And they offered an incredible program to Riley that allowed her to fully participate with a shadow in her little white Bulldog crew. The first three days her helper was the amazing Miss B from school! The girls played games, did art projects, learned bible stories and sang and danced to some seriously catchy Christian rock songs that have been stuck in my head, but I like it!











At the end of the week we were able to give Riley's two helpers and Keagans crew leader a special gift. Because they were nice enough to share their church and what they believe with us, we did the same by giving them a Book of Mormon and 5x7 of our favorite painting of our Savior Jesus Christ. I am thankful for this experience and for what a great time the girls had. In a surprising twist, watching much of the program each day strengthened my testimony of how much my Savior loves me and the girls, that I am determined to do whatever it takes to follow His plan for me and that you can feel the spirit in all different places if you are listening! I also had such a fantastic time seeing SO many old friends for high school and friends from Keagans school as a supper added benefit!





I am a strong member of The Church of Jesus Christ of Latter Day Saints. But its so great to see what incredible people are at Faithbridge Baptist Church and to feel of their love for our Savior Jesus Christ! Thank you so much Faithbridge and all your incredible volunteers for being true Christians and welcoming the Mormons! Thank you for your time, for reinforcing great lessons, for the memories, new friends and even souvenirs! Thank you and see you next year!

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Heartbreak in an Instant

Sometimes it only takes an instant for you to lose your breath and get off course. Sometimes those instances are grand and beautiful. And sometimes they are just pure heartbreak.

While driving in the car today we were singing Riley's favorite song "If you're happy and you know it." The girl loves to clap away, stomp those feet and shout appropriately. In the midst of her joy, in my rear view mirror, I saw a flash of frustration spread across her face. In that instant my heart broke into a million tiny pieces.

She was trying to shout "horray!" Just like the rest of us. Because she can sometimes give a valiant "aaaahh!" at this part of her favorite tune. Her right hand was up, her mouth open for the sound, and her eyes engaged. But nothing came out. It's an extremely common thing for my non verbal little girl. But this time it took her away from the joy of her favorite song and her frustration was evident all over her face.

That look of hers spread through my body and rested itself in my heart with its weight dragging it down to the pit of my stomach, where it has sat all day. It's just too dang hard to watch your baby struggle! And frankly I don't want to do it! There are so many incredible things about being a Special Needs mom! But today plain old regular, the old fashioned boring, and just downright typical mom sounds fantastic!

Now I am not naive enough to really think all the typical moms don't have to watch their kids struggle. I have my Keags who is generally typical, short of an extra scoop of sassyness and cuteness. And I don't want to have to watch her struggle either! But there was just something about my Riley's face today that is usually plastered with the most incredible smile, that just makes me want to stomp my feet, throw up my arms and scream "no more!!" like a toddler. That's right, I feel like having a full on tantrum that my baby has to face WAY to many challenges in her sweet little life!

My usual self would process that instant of heartbreak by somehow looking for the positive. I would usually mentally think of her great strides this week or define the moment as a metaphor to something bigger, somehow. I would replace my mulling over that look with prayers for my sweet girl. But today I have a pit in my stomach that I just can not swallow away. And to be honest, if I truly let myself go, I'm dangerously close to a full on hissy fit!

I don't want to do this! I don't want my baby to not be able to sing her favorite song! I don't want to worry about her getting so heavy that we aren't going to be able to carry her around anymore and what will we do! I don't want to constantly monitor how her medicine changes are effecting her! I don't want to worry about her blood pressure today and if she is outputting enough urine! I don't want her to sit on the sidelines at VBS and watch the other kids run around! I don't want to take her to way more therapy appointments then play dates this summer! I don't want her to have so many doctors visits next month! I don't want to have to continually try to guess what she wants because she just can't tell me! I don't want her to be frustrated that her body doesn't work like her sisters! I don't want so much more! I DON'T WANT HER TO HAVE TO STRUGGLE!!!

So there it is. My ugly little rant with no eternal perspective and no positive spin. Today it's just heartbreak. Amidst an otherwise great day and night I'm just going to let that heartbreak marinate. I'm hoping tonight that my prayers and my dreams will work hard enough on it to transform into something much different by the morning.

The irony of it all is Riley herself just quickly moved on from her instant with none of the pain and frustration that I now pour out into this blog post. She enjoyed her dinner and relished in the laughter of playing with her cousins and sister tonight as if no care in the world! Her kiss goodnight and beaming smile should have been enough to extinguish my little tantrum. So hopefully by the dawn I will have learned from her courageous example!

Goodnight my sweet girl! We will sing "If your happy and you know it" again tomorrow. And I'll promise no tantrums this time! Because tantrums aren't cute when your 4, let alone 34! Yikes!

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Milestones

We are hittin all kind of milestones around here these days!

Today the girls had their very first swim lesson. My friend Courtney from junior high (we go way back) has this amazing organization called Safe Swim Houston. They provide free swimming lessons to special needs children! So cool right? So both girls had their first lesson today in the amazing Melanie's gorgeous pool. They did great and Courtney is such a cute teacher with both girls! I'm excited to see them progress this summer! They had spent the morning at VBS (its own blog post soon) so after lessons and a good while having an absolute blast swimming with Melanie, they conked in the car. There is something I just love about my sleeping girls in a quiet peaceful car.





Miss Riley should be tired after workin so hard lately! One of her huge steps is that on Saturday she held her own bottle for the first time! Yes I know she's 4.5 and still gets a bottle. It's the only way she will take her medicine is if its quickly followed by a ba bas. And if she didn't, then she wouldn't be getting enough liquids in the day. But she's had one for 4.5 years and has never been interested in holding it herself until Saturday when she just picked it right up and drank it! This is huge and so exciting! Wahoo!



She also has started saying family prayers! When we knelt together as a family the other night like we always do, she let me know it was her turn to say the prayer! I helped her by whispering what to say, and with each prompt she vocalized her own prayer. She even gave a great big vocal output for an "amen!" It was the cutest! She did it again tonight and I'm positive the Lord hears her prayers crystal clear!

Keagan has also done a great job at saying prayers for quite a while now. Im so proud of her! Sometimes I find it funny to hear what she will pray for like "please help us to eat all our vegetables" and "please help Riley not to kick me!"





Oh how I just adore these two little people! They sure do keep life entertaining. It's so cliche to say, but I really don't know what I would do without em!









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Greatest Laugh Ever!

This is such a good example of the craziness that is my house on Saturday morning!

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Game On

Another fun summer day! It's still only mid June and my energy and summer budget are already running low!











Three and a half hours at Itz earning a ridiculous amount of tickets and riding rides wore this baby out!


But there's nothin like a good ole Slip n Slide to get the party started again!








And ending it with the perfect summer treat and tired little ones means my kind of night!



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Makin Somethin

Sweet Addie is staying with us while her mom and two sisters are at Girls Camp. She has been so helpful so I wanted her to have fun today. She wanted to "make something" and that was mostly successful and fun. If we could have skipped quite a bit of whining from a particular 4 year old (The Keags) it would have been even better. Just one of those days when you're 4 and you wake up in a stinky mood. Fortunately Addie and Riley were having so much fun that she couldn't help but catch on at times!

After Riley's regular two hours of therapy this morning we had lunch and then I took the three little Picasso's to get their paint on.











While our Masterpieces dried...








Then it was time to bust out the Pintrest pins. Ladies and gentlemen I give you Elephant Toothpaste Science Experiment...





Somewhat of a dud. Addie was not too impressed but the babies (am I really still allowed to call them that) loved playing in it.

And then we made Cloud Dough. It's 8 cups of flour, 1 cup of oil and definitely kid approved. Mix it together and scoop, form, sprinkle, splatter and of course spill. It was a success. Just a VERY messy success.












Our last project was to make dinner. Addie took one bite and loudly proclaimed it was the most disgusting thing she had ever put in her mouth! Which of course made Keagan, who has eaten the same dinner happily 3 times, say she hated it. They both ended up with plain rice for dinner.

Hey you can't win em all! I know how to take what I can get! And after such a busy day the girls are out cold at 6:50 pm! Now that is definitely somethin I can take!


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Storm Clouds

The last two days have been more then a little rough. They have been down right brutal. But I'm thankful for the brightness of joy that I catch glimpses of even when the day seems dark.

Like when I got to witness Riley's name called to come up and help during singing time in Primary yesterday. As soon as Andi Cook said her name she jumped up in her wheelchair just exploding with excitement. She was beyond thrilled to feel special and it was my pleasure to be a spectator to that!




Like listening to two cousins right now reading stories in the next room who are up way past their bedtime. They are just having so much fun that I can't shut down the sweet giggles.




Like just enjoying an Oreo with an angel. Even if they are beyond ridiculously messy when I let her feed herself because that's what's good for her.




And like stumbling upon the perfect scripture that The Lord knew I needed.
Alma 36:3
...I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day.

So thankful for the rays of sun that break through the dark clouds of stormy days! My forecast is sure hoping that the storm clouds are gone for good! This is Houston in the summer. Looks like a lot of sunshine ahead.