I'm just going to say it

So, most of my blog posts are pretty generic and unemotional. Just trying to document what our little family is doing.

But today...

I need an outlet.

And today I'm going to admit, out loud, which I never ever do, that sometimes...

it's
just
not
fair
I never ever EVER want anyone to feel sorry for me so it's easy to put on a happy face, but sometimes I just don't want to.

Everyday I watch my sweet little girl crawl around on the floor. Five-year old girls don't crawl on the floor.

Everyday I see her struggle to crawl up the stairs.

Everyday I see her wait patiently at the kitchen table waiting for us to get her down while the other girls have long gone.

Everyday I send her to school wondering if she's going to have fun at recess.

Everyday I send her to school and wonder if she's going to have an accident in her diaper (yes, no bowel control quite frankly sucks)

Everyday I wonder if the kids at school are going to see her diaper hidden under the panties I put on her.

Everyday I wonder if the pain in her head is from a normal headache, or if her shunt is failing. 

Everyday I wonder if I'm a bad mom for getting impatient with her mental/emotional needs.
Everyday my heart breaks a little when she says, "someday, when I'm like Alexa, I'm going to run a race!"

Everyday I strategize how I am going to go shopping with all four girls, because I can't push a shopping cart and wheelchair at the same time.

Everyday I wonder if I give my 7-year old too much responsibility because she helps me push the shopping cart and wheelchair at the same time.

Everyday I look outside and think, "wish I could walk the girls home from school today, but I can't push a stroller, a wheelchair, and carry a walker at the same time."

Everyday I wish with all my heart and soul that she could run around and play with the other kids.

Everday I take pride in the way her sisters crawl on the floor with her when they race, or let her win when she's walking.

Everyday I am thankful for the sweet hugs and kisses she gives me.

Everyday I thank Heavenly Father for trusting me with such a special little angel.

Everyday I am thankful for a loving and sweet husband who never, ever begrudges the struggles we face with this special gift.

Everyday I am thankful for a wise husband who let me see that God has a plan and will still love me even when I feel so angry that my daughter isn't healed. When I can't read the scripture stories about

the lame man who could walk

and the blind man who could see.

Or when I feel bad that no matter how much faith I have that she will be healed that it just won't matter.

Everyday I am thankful for my savior and for the atonement, because

Everyday

my

heart

hurts

Anyone Feel Like a Run?

Most of you know that Grace participated an intensive physical therapy program through a non-profit organization called Now I Can. She had therapy four hours a day, five days a week, for three weeks in Provo. Wow! Her session was an extremely exhausting and emotional experience for her (and us!) and she developed life-changing skills that have helped her in ways that no other therapy could. Before therapy Grace couldn't take more than three steps in her crutches, and now she walks the hallways at church. Before therapy we believed that the best ambulation she would have would be in crutches, but now we have hope that someday Grace will walk COMPLETELY independently! What we have received from our experience at Now I Can is priceless, and we look forward to her next three-week session in August.

On May 14th Now I Can is hosting its annual Run to Walk in Provo. It's a 5k/1 mile walk or run, and we want to invite you all to join us! Obviously, we will love you whether you participate or not, but we would like to give everyone an opportunity to participate in such a neat event. (We recently participated in the Hydrocephalus Association's annual walk and kept it a secret, then had people say, "why didn't you tell us!?" So, now we're telling EVERYONE!)

Please feel free to forward this information to anyone you think might be interested. This is our first time and we are super excited! Also, please let me know if you decide to register so that I can let Now I Can know who we have recruited (we get $ off her session for each person we recruite).

I've been a super-slacker in getting this info out and the walk prices increase on Friday. Oopsie! So, if you decide you want to do this please register TODAY! (Or tomorrow, I guess. haha!) Complete info on the race is at http://www.runtowalk.com/.

Thank you all for your constant loving support of Grace and her efforts.

PS...Again, please don't feel any obligation...we know its an early morning and not close to home. We will be walking in the Hydrocephalus Walk in August so there will be another opportunity to walk for Grace if you want to! :0)

Here is the link to Grace's video of her last session at Now I Can. Grab your tissue and enjoy! 

Grace's Therapy at Now I Can