Our Claire Bear turned four on July 20th. I can hardly believe it. This past Saturday afternoon, we had a party to celebrate with our family and closest friends. Every year, I try to think of a theme that Claire would enjoy. Since she isn’t able to directly tell me she wants, I have to get creative. Earlier this year her therapist, Tara, discovered that Claire LOVES the song Row, Row, Row Your Boat. Like she will stop whatever she is doing, get wide eyed, and just take in the melodic goodness of that tune! So I went with that, but put my own spin on it and created a preppy nautical party for my princess.
I hand made the decorations, which I love to do for Claire. I created classic paper sailor hats for the kids:
Boat sign and table runner stamped with anchors for the ice cream sundae bar:
The guests made their own custom sundaes:
Lots of topping in pretty mason jars:
The kids played a bucket toss game (I filled ballons with jingle bells because I thought Claire would like the sound):
We have the most supportive, loving, and fun family and friends. It was a bit hectic with so many folks in our little house (and a bit overwhelming for Claire too), but it just makes my heart happy to see all these people that adore Claire gathered together to celebrate her. I am so thankful for them.
Also, everyone joined in to sing Claire her favorite song:
merrily, merrily, merrily, merrily,
life is a but a dream…
(p.s. an extra special huge thank you to our dear friend Mike Olbinski for taking most of these pictures. He is the best! Hire him!)
Hi! Here’s a short video of Claire exploring Adrian’s nose. She has recently begun to grab more with her left hand, which we think is pure awesomeness. You’ll also hear her little voice. She loves to hold a note and then have you repeat it back to her. And then there’s Lily. As you can tell, our “firstborn” is a camera hog.
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
We know this verse intimately. It is our truth.
Since my pregnancy we have experienced:
countless ultrasounds, fetal monitoring and check ups
strict bed rest for 3 months
living in the hospital antepartum unit for weeks
an emergency c-section
our baby being in the NICU for 7 weeks
being told that baby would never even breathe on her own and was brain damaged
processing the facts that our daughter was born with complex special needs
frequent visits with a pediatrician, neurologist, gastroenterologist, surgeons, urologist, geneticist, nephrologist and soon to come sleep specialist.
physical, occupational, and feeding therapists
a case worker from the State
multiple insurance companies (need i say more?!)
special education evaluations
learning to provide total care for our daughter medically and physically as she grows
realizing we may never have a child who sleeps through the night
watching our baby be held captive by daily seizures starting at 5 months old
2+ years of 1-2 hour nightly screaming fits
panic attacks (me)
battling jealousy and bitterness over others “normal” children
mourning the loss of the dreams we had for Claire
And this is just the beginning. I don’t even know what hurdles we will face when Claire is too big to carry… or starts puberty… or can physically hurt me. Or when people start making fun of her.
I’m putting all this out there not for pity and not to complain. But because this is our reality. And despite all these indescribably hard things, we still experience true joy on a daily basis. And so does Claire. And I believe it is deeper joy than we would have known if she would have been born without disabilities. If I spend too much time dwelling on the difficulties and wishing she was different, then I miss out on all the amazing things that make up Claire. And I miss out on the beautiful things that God is revealing to and through her valuable life. As mentioned in church, our struggles have developed humbleness, compassion, and community in abundance in us personally. Claire has taught us about the love of Jesus, miracles, strength in spirit, and what truly matters more than we could have ever imagined. She may never learn to walk, talk, or feed herself but she is brimming with knowledge and depth. Her very nature has opened our eyes to the bigness of small things.
Even more, the verses above urge us to think eternally. Because of our faith in Christ, we believe in something beyond ourselves. And we believe that this life here on earth is not the end. We don’t know how long we have with Claire (as is the case for everyone). But because of Claire’s serious medical and developmental conditions, this is even more present in our thoughts. We know that all that happens in our lives both together as a family and individually is for the glory of God. Some of it is hard and sad. Some of it is happy and exciting. But our comfort and peace comes from the consistency that He is with us through it all. One of my favorite songs (and one that I sang to Claire throughout my pregnancy) is from David Crowder Band, “in joy and pain, in sun and rain, You’re the same, You never let go.”
I just realized it’s been awhile again. I really need to get in the habit of updating this blog, don’t I?
As far as recent events in the Vender world…
Adrian hasn’t been traveling for work as much, which means everything to me. And his job is great! He was selected as a speaker at a big name web conference in NYC and went out there to present last month, I was so proud of him. He is remarkably talented at what he does. I’ve kept busy with Claire and taking care of our home as usual, and also with my lovely side blog Hey Little Birdie. I’ve also found the time to do some crafting, baking, and try some new recipes, which keeps me being me. We’re gearing up for the holidays and wishing for cooler weather. We plan on going to the pumpkin festival this weekend and Claire is going to be an ASU cheerleader for Halloween.
As far as an update on Claire, I don’t really want to go into the seizures too much. It’s just too hard to talk about and I feel like I have to talk about it with EVERYONE. Family, friends, therapists, doctors, social services, strangers. I want so much for the focus to be more on Claire as a person and not on her disabilities. Let’s just say this past summer has been absolutely heartbreaking in terms of the severity of her epilepsy, we are trying new medications again, and as always will not give up fighting for her freedom from these awful seizures. We are participating in the Phoenix Epilepsy Walk next month, here is a link if you want to donate to Claire’s team. And if you live in the area, we would love to have you join us and walk! It should be a fun time, you can bring dogs and strollers too.
A few other fun recent happenings with Claire is that she has been grabbing things when they are touched to her hand and she does this activity we call her “loco legs” where she gets jingle bells on her ankles and kicks and dances like crazy. It is beyond cute and silly. I took a little video of it, so I will have Adrian help me upload it. I’m also warming up to the idea of Claire attending special needs preschool. Two of her therapists work at the one we would send her to, and they report that her teacher is wonderful. I’ll have to go sit in and visit soon to get a better feel for it. It is honestly hard to think about, every time a new milestone arrives my heart hurts all over again. It’s difficult to see your friends’ children going through these normal childhood transitions and to mourn all over again for what happened to Claire. I know it is something that will continue throughout her whole life for me. And although it is a sadness that may never completely heal, I am slowly learning how to cope and process it better. I definitely feel different about that grief than I did when Claire was first born. I hate that so much has been taken from her, that she has to go through such hard circumstances, that she has seizures daily… but the love I have for her is greater. Just one smile or tiny reaction from her brings me indescribable joy. She is unbelievably brave and drawn to music, two traits she got from her amazing daddy. She is stubborn (especially with therapists) and loves to be silly, which she got from me. I love who she is. And I hope as time goes on, we will get to share more of what makes Claire so special with the world. She really has a lot to teach it.
1. Adrian and I celebrated 8 years of marriage last week. Here are a couple pictures that a nice lady took of us. We’re at the place where we had our wedding, The Farm at South Mountain.
2. Please read this post. If there is anything that I would love to teach the world about Claire, it would be much of what she said and more. I especially wish that every doctor could read it. You don’t know how hard it is when you are constantly in the presence of medical staff and most ignore the fact that your child is even in the room. No “Hi” or “Bye” to Claire, talking about her like she isn’t there, having less of a regard for how side effects/pain will make her feel. It breaks my heart. I yearn for a day when everyone- no matter how they look, move, talk, act, or learn- will be treated equally, with consideration and kindness. I heard someone speaking the other day that repeatedly used the term “psycho.” And I know I have used it in the past too. But it got me thinking what if someone was listening who dealt with mental illness. I was thinking about how would it make them feel when we use a medical term about something they struggle with as an insult. Or words like spaz, spastic, especially the R word. I want to be more mindful of choosing not to say them. There are plenty of neutral words to use to describe something as crazy or stupid without choosing something that insults a group of people. Anyway, I hope you read the post and take what it says to heart. Love you all!
Yesterday we celebrated with all the Venders and Evjens in Phoenix at our place. It was so much fun spending time with our family (although we missed all of you who are in other states!) The weather was beautifully breezy and thankfully not scorching hot, the food was delicious as always, and the company…well, there is no question that it is the best. To be honest, holidays are always a bit tough for me. They magnify the things Claire does not get to do. From the simple things like just sitting or looking at people to the bigger traditions like egg hunts and trying candies. We still make her an Easter basket and show her everything in it, and eventually I hope I come to a place where I am not as sad at what she is missing and more thankful for what she has. The amazing thing is that I have this beautiful family surrounding us that loves her no matter what, helps out immensely, and celebrates the big and small things. We are so blessed. Anyway, here are some pictures from the day:
The birthday boy. And if you are wondering what my dad is doing…he is singing, REALLY loudly.
All the gang after dinner.
Claire with her loot. One of the only pics I snapped of her cute outfit before she made a mess of it!
We had a water balloon toss, one of my favorite cheap games. Matt and Yasmine won!
Then a candy/money egg hunt for us adults, Yasmine won!
The puppies had to wait outside during the hunt.Wendy wanted to join in though.
The next few are Claire and Chloe being silly. That is until Chloe attacked Claire. Ha ha!
The end of a nice day. I had to throw on a new tee since my little brother soaked me in the water balloon fight!
you may have thought i’d forgotten about this little blog. sorry!
in actuality, i hated the way it looked. it made me want to barf. and i didn’t want anything to do with it until i spruced it up a bit.
hope you like the makeover! i wanted to keep it simple and clean. hopefully when we get some new family pics taken this year, i’ll change out the picture in the header to a more recent one. but thanks to our good friend mike for taking the pretty picture of claire back at her second birthday party!
a lot has happened since i last posted. the holidays have passed, a new year has begun and many things have changed.
adrian is still loving his job and being a spectacular husband/daddy as always! the exciting update on him is that he will return to playing drums at church on april 3rd! i cannot wait!!
i am still blogging with my friends over at Hey Little Birdie. i absolutely love it. if you haven’t checked it out yet- please do! i’ve also started to help out organizing refreshments at our church’s art gallery for First Fridays downtown and on sundays for church services. a love of hospitality and food go hand in hand for me so it is a perfect way for me to contribute.
lily is doing great. still as hairy as ever. she’s had some bad allergies which make her kinda stinky lately. but she is on medication and we should get that under control soon.
and claire. well as you know, there is always oodles of news where she is concerned. she has been moving and growing and babbling up a storm. every day her little personality comes through more and more. she loves to roll around on the floor, is learning to scoot, and we get tons of smiles and giggles. she definitely lets us know what she likes and doesn’t like!
her seizures have changed. she doesn’t do as many. but some of the ones she does are very different than they used to be. she does a stiffening in her body for a few seconds and then releases. she might do it once or twice and then she’s done.
she has two hospital visits coming up. first one is march 11th for a g-tube. it is a small button like thing on her belly. we can feed her directly into her tummy or give her medications through it. it will be a beneficial tool to making sure she gets all the hydration, nutrition, and medication she needs. since she is growing so much, i spend SO much time trying to get her to get all her food in. she is a typical toddler who might decide not to eat- whether she is sick/wants to play/is mad/the options go on and on. except she is not the typical toddler who eats fast and makes up for missed meals on her own. and it is a problem when i spend so much time force feeding her that we don’t have time to work on teaching her new things like straw drinking or on therapy time. she also hates her medicine and tries to spit it out all the time. it is a big stress. a g-tube does NOT mean that claire will not eat by mouth. or that we are giving up on her doing it 100% on her own someday. in fact, it will help give us more time to work on those skills. we can practice chewing hard foods and drinking from a cup all while her nutrition is being put directly into her tummy. it’s not something that anyone will notice unless she is unclothed and it will not hinder her in any way. when we don’t need it anymore, it is a simple few stitches to remove. the surgery should be quick and just an overnight stay in the hospital. please pray for the surgery! pray that claire would be safe, heal fast and benefit greatly from it!
we’re also going in on april 4th for an overnight video EEG to get a look at what her brain is doing. i am not looking forward to it in the least. so i’m not going to think about it until the date is closer.
anyway- that’s the latest!
here’s some pictures from the last few months in case you aren’t on facebook to see them.
we just returned from our annual labor day weekend to the beach with some of our bestest friends and their families. it always goes too fast! this year we had both ups and downs on our brief vacation. claire did great sleeping for us (which is hard for any kid away from home!) and had very few temper tantrums. she got to interact with her friends some and had a great time hanging out on the sand. she loved the feeling of the sand between her little toes. she got a minor sunburn on her cheeks which i felt HORRIBLE about! at least it should turn into a nice tan since she inherited her daddy’s good tanning genes. and as always it is a blast to spend time with our good friends, these families are like our family and we love them beyond words.
the hardest thing was claire started having more spasms the day we left. she has done such a big girl job of switching off formula and eating lots of solid foods. unfortunately, it seems her brain isn’t too keen on these changes and is letting the ugly spasm monster emerge with greater force. starting tonight we went back on the formula to see if it helps get things under better control. all those spasms meant i was a big ball of emotion for much of the trip, which always makes things not quite as peaceful and fun. but i really tried to keep calm and remember that this is not permanent and enjoy the time we had at our beach house. (this mantra also came in handy when our car almost broke down in el centro, california. a super hot, super small town in the middle of nowhere. one hour and a big answered prayer later, it thankfully started back up!)
one of the best parts was a visit from adrian’s brother, eric, who lives in san diego. we already miss him and can’t wait until christmastime to see him again! of course i did not get many pictures, big surprise huh? it’s always so hard for me to remember that with everything else going on! i did manage to snap a few though so here they are:
our little sunkissed girl playing one morning.
the dad’s getting buried in the sand.
all covered up!
mommy and claire enjoying the nice weather.
you can’t tell but adrian is somewhere under that wave. it smashed him!
claire had the cutest bikini on. but she wouldn’t lay still and model for me. she was too busy rolling and trying to get in the sand!
fun football games in the FREEZING ocean! they didn’t seem to mind too much though. they stayed out there until they were shaking and bright red from being knocked around! i already wish i was sitting there watching them again. if only we could move to san diego full time! i wish!
we celebrated claire’s second birthday saturday morning with an extra special brunch for our extra special girl. we were lucky enough to have our close friend, mike, capture the day for us (he is amazing!!). i think claire enjoyed the party, she really loves being around people. however, i made the mistake of adjusting her special diet a few days prior, which always makes her sleepy as she adjusts. needless to say, she wasn’t as active as usual that day. but it was still a beautiful celebration of her. she also collected about $300 to donate to blood:water mission at her lemon:aid stand. i think she would be so happy that her day was used to help others. so many people have prayed, served, loved on and aided us since claire was born. it is only fitting that we do what little we can to forward that love on and honor our daughter’s life in the process.
below is the brunch buffet table. it included mini quiche, lemon whoopie pies, pineapple bars, banana bread pops and fruit cups. the banners are from the fabulous tomkat studio.
we also set up a lemon:aid area with information on blood:water mission and lemonade favors for the guests. (and a hunky guy is posing by it for you.)
here’s the birthday girl.
and her beautiful hands.
here’s our other little baby enjoying the party.
here’s some pictures featuring my pom madness. believe me, this is only half of it.
we also made little jingle bells to ring after we sang the happy birthday song. if you know claire, she LOVES bells!
claire, today your daddy and i celebrate the day God brought you into our world. two years ago, you were the tiny four pound baby that was placed in our arms and changed our lives forever. now, you are a beautiful little girl who has already taught us more than we could imagine and amazed us with your bravery, your spirit and your love. we are very proud of all you have accomplished this year and we will never stop fighting for you. we may never understand why so much was taken from you, and in some way we will always mourn that, but we want you to know that you are loved exactly as you are. you were fearfully and wonderfully made. and we are beyond thankful to call you ours.
claire at two:
about 32 inches, 22 lbs 4 ounces.
this year claire has learned to roll over front and back, multiple rolls. she pushes herself up on her arms during tummy time and is trying to scoot herself around. she has learned to put her hands and arms in her mouth, grasp objects with a prompt, kicks and pushes with her legs like crazy and loves to rock herself. she loves watching yo gabba gabba on tv. she loves music, bells, clickers, maracas and lights. her favorite places to go are liberty market, IKEA and anywhere outside. she also likes car rides. claire has learned to love the water and likes swimming. she loves to smile, laugh and babble. she loves when people clap and cheer for her. she is very affectionate and loves being snuggled and kissed. last but certainly not least, claire adores her pacifier.
we are asking our family and friends to donate in honor of claire (and in lieu of birthday gifts) to a charity we support, blood:water mission. they are an amazing organization that builds wells in africa. you can read more about them on their website and also donate by clicking on the donate link on the site.
we’ll have lots of pictures to share soon of claire’s lemon:aid party! and lastly, thank you for supporting our family and for loving our little girl.