Last month in church, we studied James 1:2-4
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
- numerous brain MRIs, scans, EEGs, procedures, surgeries
- 8 seizure drugs and a special ketogenic diet
- 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
- wheelchair clinic
- medical equipment
- multiple insurance companies (need i say more?!)
- a gtube
- 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.”
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.
i found this beautiful shot of the world trade center twin towers on flickr today. eight years ago, i woke up to the news blasting though my normal top 40 radio alarm. confused as to why the news was playing, i turned on my tv only to see that tower one had been hit. i then watched as the second plane hit and the towers fell. at the time, i was a senior at ASU and called my parents, who were living in chicago, immediately. all i wanted to do was to go home, hug my mom and feel safe again. 2970 innocent people lost their lives during this unbelievable attack. and they were people just like me who started that day off as if it was any other normal day. i want to live every day i have to its fullest, embrace it all, be truly present- because i never know when it might be my last.
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claire has emerged from her keppra coma. i have never seen so many smiles, so much awareness, i feel like she is allowed to finally experience her world. i hope whatever medications we try in the future never take her away from me again. just look at her eyes, they have come alive.
“I will turn their mourning into gladness;
I will give them comfort and joy instead of sorrow.”
thank you Jesus.
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.
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.
what: claire alaina vender is being dedicated at her church. (child dedication is like a pre-baptism if you will. we are pledging to raise claire to love God and know who He is. when she chooses to, she can be baptized, that way it is her choice!)
when: this sunday, Mother’s Day, may 10th at 9:30am
where: lifechurch.tv phoenix campus meets @The Boys & Girls Club 44 N. Oak Gilbert, AZ 85233 (off Elliot and Gilbert)
consider yourself officially invited to share in this special day with us, we’d love to see you all there!
sorry for the looong blogging absence. it’s been a pretty hectic month, some good and some bad. claire is continuing to grow and get prettier every day. she is now 28 inches long and 19 lbs 13 oz! uf-da! she is still eating all by herself and we have gone down to 4 feedings a day since she is able to take a bigger bottle and solid food. it’s a challenge to sometimes follow a schedule since she is very sleepy somedays and likes to stay awake at night but we are working on it. her favorite foods are spinach, sweet potatoes and mangoes. she still loves her pacifier and now has a favorite maraca to play with thanks to her nana lisa. her hair is getting very long and we are able to clip her bangs to the side with a barrette. she also has started cooing a lot more and likes to say “ooooo” and “gaa.” as for the hard news, we went to barrow neurological institute a couple weeks ago and she was diagnosed with Infantile Spasms. it is not what we wanted to hear. it usually means that the risk for mental and motor retardation is high. the spasm episodes typically last until age 2 and then a different form of epilepsy takes over. please join us in praying for claire’s healing and development. we know the medical odds are stacked against her but we believe in a big God who can do big things. we know that He uses ALL things for good. and we trust that He is protecting our claire bear and bringing us through these struggles for an amazing reason. i won’t pretend, many days are very difficult and overwhelming and sometimes i want to just give up. but i know deep down inside me the truth. the truth that God loves our little family more than we can imagine and created our baby girl just as she is. it may not be the average, normal scenario that i dreamed of but it is His perfect plan for our lives and i am so thankful for the gift of claire.
well, i hate to have to tell you all that we got the worst news of our lives but it is true. claire’s brain development is more abnormal than we thought and we still have no answers for her future- only that a “normal” outcome looks less likely than before. her brain tissue is thin, meaning she does not have as much brain as a typical infant does; there is no pressure in the extra fluid in her ventricles, meaning her brain is not thin b/c of pressure from the fluid so a shunt will not help; and lastly her EEG showed very abnormal brain waves especially in the left side. she has been having mild seizure-like behaviors for the past couple weeks but they were not detected on the EEG, this doesn’t mean she is not having seizures though. we are starting her on an anti-seizure medicine hoping that this will help the neurons in her brain behave more normally, but it is not guaranteed to work. we are also faced with the fact that her head size may swell and she will need brain fluid to be drained if the ventricles do not stop growing or the opposite- her thin, unhealthy brain tissue may stop growing and lead to a small head size. we pray that seizure medicine will help, her brain will mature and learn to communicate more effectively and her physical development will be completely normal.
are we devastated? yes. are we angry? yes. but are we giving up? never. claire is still the same beautiful, lovable miracle that she has always been. this new information does not change that. we will never stop fighting for her and working hard to find ways to help her reach her full potential- whatever that may be. we grieve for the dreams we have lost, but we will have to find new dreams for claire and still embrace the joy that she brings to our lives. this is the hardest thing we have ever faced, beyond any imagination and expectation but claire deserves all the love, patience, dedication and comfort that we can give her.
she is our daughter, our inspiration, our delight, our precious gift.
i wanted to pass along that Claire’s brain procedure will be next week, thursday the 15th. we expect Claire will be in the hospital until saturday and one of us will be allowed to spend the night with her. please join us in prayer for Claire’s healing, for the doctors and nurses who will be caring for her and that we would not waiver in our hope that we will have encouraging answers to her brain conditions. also, i want you all to know that Adrian and i are leaning on each other, our marriage has never been stronger and we are so in love with our beautiful, strong baby girl. she doesn’t even know what an inspiration she already is to us. the huge hurdles she has faced in her few months on this earth are nothing short of amazing. in the midst of brain, kidney, reflux and feeding problems she still continues to smile, coo and wiggle with happiness. sure, she is not where other babies her age are developmentally but we are so proud of what she has accomplished and we know that there is much more to come.