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.

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.

one of my very bestest friends since age 12 was here for the week. emily. sometimes if i think about how she moved back to texas 5 years ago, i still cry. (not trying to guilt trip you em!) but really, i miss her. she is quiet strength, comforting kindness and side splitting silly all rolled into one beautiful woman. my life would not be the same without her. since claire has arrived, i haven’t been able to have as many long phone chats with her and it makes me sad. i seriously need to schedule time for that because she is so important to me. anyway,  emily and claire got to meet and snuggle for the first time. hooray! emily is a natural with babies and will make an amazing mom one day. and we discovered they have the exact same hair color. so pretty!

thanks to two very special people (you know who you are) the venders enjoyed a fabulous week in minnesota. we are so blessed to have generous loved ones in our lives that helped us make the trek to my home state. i love minnesota. and i miss it dearly. everytime i visit i dream of living there and raising my family in a land where kids run between each other’s lawns, neighbors know your name and there’s green. green everywhere. and words like supper, pop, uf-da and hot dish are not foreign comfy, familiar minnesota, i miss you already.

claire was an angel on the plane rides. totally awake the whole time there and totally asleep the whole time back. but quiet and her sweet self both times. she hung out on her boppy pillow in my lap the entire flight.

one of of the highlights of the trip was introducing claire to all of her relatives that she had yet to meet. and one of those most important people was my uncle brad. he will now be known as the claire whisperer since he lulled our little girl into a sleepy peaceful rest everytime they cuddled.

claire also got to meet her great great aunt elaine (who her middle name is after.) i think they had an instant bond.

we also took a picture of four generation of stettler women. my grandma bonnie, my mom lisa, me and claire.

here’s claire with her great grandparents that she met for the first time.

and here’s all the evjen gang that ventured up from phoenix. (we missed you alex!!)

unfortunately, i forgot to take pictures many times so i missed a lot of things. silly mommy brain. but there was lots of visiting with my grandma nancy too, an evjen cousins reunion, an evening with our friends the luncefords and panera bread co visits. yum. oh and the last half of our trip was welcomed by rain, clouds and record low temps for june. brrr, it was sooo cold. like january in phoenix. i was not prepared.

claire was exceptionally great the first four days up in the twin cities. she was sleeping all night, awake all day and a happy girl. rochester must not have agreed with her because she returned to her bad habits of sleeping all day and awake all night being fussy. mommy and daddy did not sleep much then. i think she has these times when her teething is really bugging her. i can’t figure out what else it would be.

and i am starting to accept that with claire there are good days and not so good days but they are still DAYS that i get to spend with my beautiful daughter. and there is such joy in that.