Friday, April 22, 2011

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

7 comments:

The McMullin Family said...

Marianne,
I can't say I understand what you're going through, but I understand "it's just not fair". You are an incredible person and I am honored to call you my friend. You can do this, I know you can! I love you! Happy Easter!!

wjlarsens2 said...

oh marianne...how we love you, sweet gracie and your family. no one will ever fully understand, but we support you and pray for you. chin up....you're loved!!!

wjmom said...

Sweet friend, this post makes me happy because it's just. so. normal.

I love you. I love your family. I know that God chose you for Gracie. He also chose Alexa and Adelle and Sophie and Phil. They will be OK and so will you.

I will not feel sorry for you. I will celebrate your beautiful, amazing spirit and your marvelous skills that include mothering along with hundreds of other things.

God bless!

Michelle said...

HOLY COW!!!! To say I'm bawling right now is a huge understatement! Marianne, THANK YOU for posting this. Why? Because it shows you are normal and are letting all of us who read this be part of your struggle. This was your most beautiful post! I cannot comprehend how hard it would be to go through what you all do. My heart aches for you. As mothers we all want the absolute best for our kids and obviously having a child with special needs isn't the "optimal" situation. Grace is such a beautiful and talented girl. I am always amazed at her strength and sweet spirit. I must say...she is SO lucky to have you and Phil as parents! She couldn't have lucked out more in that category. You guys are amazing with her, and with all your girls. I love you guys. I truly do. Thank you for allowing us to be part of your life. You are a blessing to us. And thank you for doing this post and for making yourself vulnerable. I know it was hard for you, but I somehow feel closer to you just by reading this. You are a beautiful mother and you are doing a perfect job. I love you!!!

val said...

i can't say i know exactly how you feel but i do know of a mother's love. we would do anything for our sweet ones. i'm sure it is heartbreaking to not be able to "fix" everything for your sweet grace. your worries are valid.
you are a fabulous mother and real, honest, loving, beautiful, and much more. sending love your way...

Erin said...

Hey - I don't know if you remember but a while ago we talked about getting all our girls together for a playdate - we would still love to do it if you are ever interested.

Dan and Melissa said...

Wow that made me cry! Thanks for your honesty and your love. Your beautiful writing puts in poetic terms what all of us mothers feel (to some extent) every day. You're a champion mother my friend. I can learn so much from you.

By the way we're going to be in Utah this coming weekend. We would love to hang-out if you guys want to. our phone number is 801-864-6718.