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.
Claire turned three at the end of last month. I can hardly believe it. We had a nice get together with our closest friends and immediate family at the house. I handmade a lot of decorations for Claire and we ate yummy brunch food. Here are some pictures our dear friend Mike Olbinski snapped of the day:
The theme of her party was based upon this print, which is a song title that The Roots perform from her favorite children’s show. So the decor featured lots of hearts in coral and aqua. I didn’t remember to take photos during the party so I sadly didn’t get any big shots of all the things I made to decorate the room. There is so much to do when hosting a party that I forgot all about documenting all of that! But I really appreciate Mike getting these pics because without them, I would have none!
We also did a photo booth upstairs. It was lots of fun to look through the pictures and see what everyone did. I’ll do a post soon of my favorites
We love our friends and family. Too many cute kids to count in this bunch.
Claire had an okay time. She got a little overwhelmed with all the people and noise at a few points. I totally understood. So we don’t have many pictures of her either. But her dress was adorable and had interlocking coral hearts on it. Of course she coordinated with her party, duh!
We showed a slideshow at the party with everyone’s pictures and videos that they sent with birthday wishes for Claire. I will treasure this slideshow forever.
I also made a picture collage of Claire throughout her first three years. This picture is a closeup but it was in the shape of a giant heart.
Hope you enjoy the photos, if you want one of them to download and print off just email me and I can send the photo to you.
Happy 3rd birthday to our beautiful Claire. It’s amazing how time flies by, especially with all of the obstacles we have to go through. I don’t write on this blog often (Nicky does a really good job of putting together these posts) but It’s been a while since we’ve updated our blog so I wanted to give a brief update.
Claire is still battling through her seizures multiple times a day, everyday. If anything, we think her seizures have slightly worsened in recent months, having some seizures last moments longer and appear more intense. We thought it was the zonegran medication that affected this, but we’ve weaned her off this medicine for over a week now and we see no change yet. This just may be her natural seizure pattern now.
So to arrive at her 3rd birthday and feel that her seizures are worse is very disheartening. We deal with the typical kid things (fussiness, pickyness, bad-timing-for-poopy-diapers) but nothing punches you in the gut like these seizures. To say that they suck is a huge understatement. We have to try really hard to stay hopeful that the next attempt of treatment is something that can help. There are never guarantees, but we have to will ourselves into believing, despite our constant letdowns.
But don’t think it’s all negative. Life with Claire brings a mixed bag of emotions, including lots of happiness. Claire still loves percussive sounds and enjoys her favorite tv shows. Even in the middle of a crying fit, the intro theme to Yo Gabba Gabba does wonders in calming her down She is making a lot of improvements in her physical mobility. She’s a pretty strong girl! We have amazing therapists that love Claire and work hard to help with her development.
We are so thankful for our amazing families that love on Claire and provide Nicky and I so much emotional support. We have awesome friends that show so much love to Claire and to us. Claire has cousins and little friends that are so compassionate and loving towards her, anxious just to be around her and make her smile. You have no idea how much this means to us. We thank God for blessing us with a child that is such an image of beauty.
Like I said, it’s a mix of emotions but that’s what it’s like to love Claire. To love Claire, your heart needs to break because of these seizures. It’s a tragic but real part of her life and we owe it to her to ‘hurt’ with these seizures. But to love Claire is to also embrace the beauty and joy that she is. To love her is to be overjoyed at all the moments in which Claire experiences happiness.
Our ultimate wish is that Claire’s seizures go away. We’ve got a lot of things in place to try to fulfill that wish. But today, I have a different wish on Claire’s behalf and I hope you can help.
So, what is my wish?
I said earlier one of the things that makes us so happy is when people show love to Claire. A lot of you do that so wonderfully, but I’m looking for something more unique today. Something that we’ll show Claire someday really soon and tell her ‘Look at all the people that love you.’
I want you all to say ‘Happy Birthday’ to Claire. I want you to REALLY say it. I want a photo of your face and a little message saying ‘happy birthday’. Or, I want a video of you actually saying ‘happy birthday’ to Claire. Twitpic ‘em or Twitvid ‘em on Twitter. Or use tinypic.com to upload it and send me the URL. Or just send them straight to me if you know how to. Blog comments are nice, but I’ll be honest and say that I’m really hoping to capture peoples faces with a message. I want a big collage of people saying happy birthday.
Again, I want Claire to see the people that love her. Selfishly speaking, it would also mean a lot to Nicky and I too. More than you realize. So take a few seconds out of your day and really say to Claire ‘Happy Birthday’!
One final note… I’ve talked already about going through each day with the sadness that Claire’s condition brings but willing ourselves to embrace the joyous life we have with her. This song ‘New Day’ by Robbie Seay Band is an anthem of sort for us. It’s a reminder from us to Claire (and also for Nicky and I to each other) to enjoy the new days that God gives us. Even on her birthday today, we’ll see seizures today (and it will suck), but it’s a new day and in the end it’s gonna be alright.
“New Day” Lyrics
I’m gonna sing this song To let you know that you’re not alone And if you’re like me You need hope, coffee, and melody So sit back down Let the world keep spinning ‘round For yesterday’s gone and today is waiting on you to show your face
It might not be The prettiest thing that you’ll ever see But it’s a new day, oh baby, it’s a new day And it might not look like A beautiful sunrise But it’s a new day, oh baby, it’s a new day
I’m a pilgrim soul I’ve traveled far and come back home This land is hard and cold For those who long to love And I know it might seem That the world is crumbling But it’s me and you dancing in the kitchen at 2 am And we’re still alive
It’s the calm of the storm that comes blowing in It’s the springtime saying I’m back again The clouds that roll by Crossing moonlight Me and you love – everything’s alright Standing in the rain with nowhere to go Laughing and we’re spinning and I hope that you Remember this day For the rest of your life Me and you love – everything’s gonna be alright
And it just might be The prettiest thing that you’ll ever see It’s a new day Oh baby, it’s a new day If you look outside To see a beautiful sunrise It’s a new day
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.