27 June 2011

messy hair means you're here

there are the cutest little hand prints on our backdoor window, a big mess of receipts in a pile on the floor where little miss decided to dump out the contents of my bag, and on the couch, faint remnants of evidence of a finger painting hummus session she decided to indulge in yesterday.

contrary to all of this, i promise i don't let my child run wild.

it is no secret i struggle keeping up with house cleaning when i am feeling less than stellar. honestly, i have days when it is not a priority because sookie is number one and i often need to rest so i don't fall into a vicious cycle of getting sick because i'm not sleeping enough. we have been oh so busy these past several weeks and i am crashing hard lately from pushing myself too far. this is nothing new, an (almost) accepted part of reality... but difficult to explain when people aren't familiar with what cystinosis can do, and does to a body.

(& this is not a woe is me post, just something i need to document so i stop feeling like a failure in every aspect of my life. because i know i'm not but my inner critic is mean and bitchy when sleep deprived.)

the thing is, i can be much too hard on myself and today was one of those days. i reached my breaking point when i opened a medical bill from an er trip in april. i forget what my body has been through and the fact it has been taxed; much beyond what it was ever supposed to go through. it is a humbling and yet frustrating piece of my puzzle. this is a giant glaring piece of valid information that is somehow so easily lost in my heart when i start aching for normalcy and comparing myself to other women and mothers. little miss s has been exceedingly clingy lately, to the point she wrapped herself around my leg this afternoon while i poured a boiling pot of water into a strainer in the sink. stabs of motherly guilt. thoughts like, why are you even bothering to make pasta when she needs you? yes, silly notions such as that. the truth is i would do anything for her, even give her my only working kidney if she needed it.

everything built up today, the dishes, the laundry, the emails, the grocery list, the errands, the obligations; my patience was nowhere to be found and there was a little being who wanted nothing more than to feel her heart beat close to mine while her arms were firmly enveloped around my neck.

i'm sharing a phone call with frankie in south carolina, who is a second mother to me. her daughter laura has cystinosis as well. we are sharing our enthusiasm for the upcoming family conference in a few weeks. i am going into detail how many things i need to get done, the specific state of my less than spotless house, when she stops me mid-sentence and reminds me what i've been given. she reminds me i'm one of a few. only a few other women have been on the adventure i have been on and of those few, two passed away as a result of having a baby.

as soon as i am able to stop feeling like an ungrateful little brat, i move along and aim my chin toward the sky.

rory is working late so he can accompany us to the aforementioned cystinosis family conference. night time duties are mine and i embrace them with my fresh take courtesy of the obvious wisdom tattooed all over my soul.

she takes a bath filled with splashes. she starts to cry. she points to her towel and whines. she is ready for bed. she brushes her teeth. (she insists on doing it herself; and my college educated brain screams autonomy versus shame and doubt, autonomy verses shame and doubt...which one are you going to foster momma?) i clean out her ears. i sing songs to her while i massage her legs with her lavender scented lotion that promises to calm her for bedtime. (it does, most of the time.) i put her monkey pajamas on; the ones with the cute monkey that says "i'm music to mommy's ears" and the sweet summer shorts that are adorned with yellow hearts. i clutch her close to me and notice i haven't combed her hair since exiting the bath. i ruffle her red curls and tell her "mommy didn't comb your hair, but that is okay; messy hair means you're here."

& i realize it is something i should be telling myself on my days when i feel like i can't get anything right. when i'm torn in a million directions by obligations and duties and all i want is to play dolly is in the cardboard spaceship with my daughter. it is something i must remind myself of every single day. messy hair means you're here. who cares about the imperfections when you get to live out so much of the perfection of doing what they said couldn't be done.

 bear hugging the frog 
(frog and turtle both on clearance at hobby lobby)
that chair? was my great grandmother's
i spruced them up a bit
blog post coming soon
they turned out SO darling

do yourself a favor and celebrate what you've done with your gorgeous life.
it feels good.


i'm not going to post this every time, but i'm now on topbabyblogs.com and i would lovelovelove a vote if you would like to show some extra love. you can vote once a day and you simply click this link below, then click again where it says "vote for this blog" as easy as that! i'm going to be real; i would be tickled to get into the top 20. thanks sweet readers! you are all amazing.

Top Baby, Daddy & Mommy Blogs on TopBabyBlogs.Com


  1. i'm so glad you're BOTH here. you are an incredible mama. i hope to one day be 1/2 the mom you are. if you need anything, you know i'm here.

  2. Tahnie you are incredibly beautiful inside and out. Your heart shines through your writing. I was crying both happy and sad tears at the same time. So excited to see all of you in SF. Love you!

  3. Hi! I just found you on the blog hop and I am your newest follower! Your blog is inspirational and your little girl is a doll! I was cracking up at the picture with all the bows in her hair- so cute!!! I would love to have you stop by and follow back if you want!
    Camille @

  4. I love that you have so many followers of this blog. You are a soldier of love.

  5. Oh my goodness! You are such an amazing woman! God has given you strength beyond what anyone else can even understand. Thank you for your post and inspirational story. Love your blog!!!

  6. I used to care a great deal about keeping a clean house. Then I was diagnosed with a chronic illness. Through the pain and fatigue I learned to pare down to what is really important. So I totally understand this post, though my condition is far less serious than yours.

    I'm glad you have a strong support system; that makes all the difference. And I'm happy you have a friend who will remind you not to be too hard on yourself and to find the joy in the now.

    Thanks for linking up to The Mom Pledge blog hop. I hope you'll join our community:


    And I hope tomorrow is a better day!