our friend and photographer, misty, posted a recap of claire’s first birthday bash on her site. check it out here!

here’s a little preview.

i can’t wait to see all the pretty and fun images misty captured for us. she is super talented, nice, pretty, smart, creative- i could go on and on singing her praises. but seriously guys, if you are in the valley and want an exceptional photographer then contact her! thank you misty!!

but…adrian and i sure do make pretty babies.

i’m just sayin’.

claire was showered with a mountain of thoughtful, generous presents for her birthday. but i think if she could talk, she would tell you that her favorite gift was clarence the claire bear. she just adores him. he rides with her everywhere she goes in the carseat/stroller and she holds onto his little ears or arms with love. every kid needs a special stuffed best friend and clarence is extra special because he is handmade by claire’s auntie amber. i am sure he will be a part of the vender family for a long time and will be a lasting memento from claire’s childhood. he is extra cute and proof that even boys can look great in pink. thank you so much amber! (and if you haven’t yet, order something from her shop!)

and here’s an extra pic of claire on her actual birthday monday before going out to supper with mommy and daddy to celebrate. so pretty!

happy birthday to our little girl! wow. it is so true when they tell you that the years will fly by. i can’t believe that 365 days ago, claire entered this world and changed ours forever. she has been through so much. unimaginable things. things that i don’t know if i could even handle. it is amazing to look at my tiny one year old and think she is stronger than i am. to honestly say that this little girl is my hero. that even though she cannot “do” very much in the traditional sense, i have learned so much from her. she is an excellent teacher. claire came into this world a miracle, a fighter and has already proved so many doctors’ expectations of her wrong. i have no doubt that she will continue to amaze us, inspire us and show us a love beyond understanding.

happy first birthday claire bear!

yes, i have been MIA for a few days. sorry. but it will all be well worth it. trust me! are you ready?!?!

i now present to the internets the worldwide premiere of the most beautiful smile in the entire universe-

(sorry if it takes awhile to load!) but didn’t that just make your day? every time i watch that happy face my heart bursts with joy. in the midst of seizures, intense medications, special needs and abnormal sleep patterns- she still can give us a glimpse of pure bliss.

some things you should know about claire- she loves clicking noises, she loves repetitive vowel sounds and she loves to wiggle.  we indulge those loves of hers every opportunity we get. i don’t care if i sound like a weirdo to everyone in the room. she deserves it.

adrian took claire to the neuro appointment at barrow alone and it went well. he said he liked her neurologist, dr. ng, even more this visit than before, which is a comforting thing for us. he made no mention of the scary ATCH steroid injections as a treatment option for claire (phew!) and instead wants to try raising the doses of the two seizure meds (keppra and vigabatrin) that she is on currently.

if that makes no difference in the next couple weeks then we will try the ketogenic diet. it’s basically atkins to the EXTREME. she would have to start it in the hospital under watch of a dietitian, who would also train us on implementing the diet. many families see a great reduction in spasms on it so we have no problem giving it a try if recommended. it will be difficult to stick with- we’d even have to switch what wipes, lotions, shampoos, etc she uses but if it helps we are all for that. and if it doesn’t help then we have a couple more medications to try (which i am praying is not needed.) from here on out the new meds to try are more toxic to the body and have a lot more serious side effects than the tiredness, insomnia, irritability and spittiness that we are dealing with now. so in the next couple weeks we will just have a more sleepy, grumpy girl as we increase the dosages. but at least she is a sweet, cute, sleepy grumpy girl (see evidence below)

please keep praying that this will work for claire and that God would miraculously heal her brain. thank you again for all of your support, we love you guys.

it’s been a tough week because it is becoming more evident that the newest seizure medicine from the UK is not taking away the spasms. claire has a neurologist appt at barrow tuesday afternoon, so i am sure we will be talking about the next step. i am dreading it. so much so that adrian may have to take claire without me. i literally go into a panic just thinking about this. i don’t know why but i avoid all conversations about claire’s brain as much as i can. i do not even want to think about it, see pictures of it, hear more explanations, bad news, etc. it makes me feel like i am having a mental breakdown. i am not exaggerating in the slightest. i am petrified. adrian says that if it is too much for me that he can take her and have all those brain talks and just tell me what i need to know. he is so much better at explaining all of this to me than the doctors. i hate doctors. i don’t care if they are nice, or caring, or smart. they SUCK. he says that i take claire to so many doctors appts alone and so many therapy appts alone, that if skipping the neuro doctor will help me then that is what he wants to do. i love him so much. but i also don’t want him to be there alone either. i know it is hard for him too. at church this weekend, we talked about that even though life is uncertain, God is not. that the bible is not full of happy-ever-after, hunky dorey life stories. remembering that the hebrew nation waited on God for 400 years to have their prayer answered. that even when it feels like God is absent, not showing up in my situation- He is still there. that He often uses the biggest messes to do the most amazing things. and we know that in ALL things God works for the good of those who love Him. that He has the whole world, my world, claire’s world in His hands.
but my heart still asks why, i am still scared, i am still hurt, i am still jealous of my friends’ babies, i am still angry. yet beneath all of that, i am still waiting and i still believe.

i am sitting with my laptop listening to my fave mj song on itunes, pyt (we can make it right, hit the city lights)…crying. call me silly but michael jackson meant so much to me as a kid. i thought he was the bee’s knees, the ultimate cool, the cutest guy and i wanted to marry him. seriously. i had this poster of him in a yellow vest hanging on my bedroom wall as a 2nd grader and i kissed his face everyday. i used to dance around in my basement to the thriller album and tragically smashed it while twirling with my fairy princess wand. the little girl in me will always remember him as the mesmerizing, unbelievable talent that he was. goodbye michael.

one of my absolute favorite bands, david crowder band, has a new single from their upcoming album available for download on itunes. this makes my heart so happy. i am double the happiness because it also happens to be “how he loves” one of my absolute favorite worship songs at church. a song my mom loves to sing to claire. and a song that we most definitely will be singing at claire’s birthday celebration.

He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.

And oh, how He loves us so,
Oh how He loves us,
How He loves us so.

We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
So Heaven meets earth like a sloppy wet kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…

He loves us.

if you know me, you know that i LOVE to plan a party. and the fact that this party is my little girl’s first birthday makes it ten times more exciting than any party before. my head is a tornado of ideas and soon my hands will be sore from the amount of crafty things i will be creating but to me- it is pure bliss. here’s a little peek into my delightful madness:

- the colors are hot pink, bright orange and lime green. very punchy, very summery, very girly.

- i am taking it upon myself to create these flower pinwheels to display in metal buckets filled with gerber daisies. cute!

- i am also planning on hanging these paper flowers from the rafters of the park ramada.

- the food will be an all american bbq. that means skin-on hot dogs and buns from von hanson’s. no crappy grocery store wieners here, but authentic minnesota meat! (how cool is it that they have one lonely store out here in chandler?!) bbq beans and sides from our own joe’s real bbq, yum. and a few other dishes that i will put together.

- did i mention mini cupcakes yet? i’ve discovered that mini cupcakes are the WAY to go for parties. less mess, easier to eat and the silly skinny-mini’s who say “i don’t want dessert” can’t even resist a tiny bite of cake perfection. come on!

- there will be singing. yep. our good friend and church worship pastor, stephen cole, is helping us make the evening extra special by leading us in song. they will be songs that celebrate the gift God has given us in claire, reflect on the journey this has been in our lives and ultimately tell Him how much we love Him. and if you are a guest and don’t sing? expect to be STRUCK DOWN by lightening. just kidding. but really i might give you the evil eye and you DO NOT want to chance that.

so there are some of my fantabulous plans. i cannot wait to have our close friends and family there to celebrate claire and what an amazing little miracle she is in this world.