Sunday, April 06, 2014

Happy 4, Eli!

Happy Birthday, little buddy. 
 Today we celebrate the gift of you to our family. 
We have no idea if you celebrated April 6th before us.  What we do know is that you are something special.  This date will never ever, ever pass again without cake, ice cream, candles and some singing.   
 Your grandparents, aunts and uncles love you much too, and like to make a big ole fuss over ya. 
 Today we cousined up for some celebrating and Skyped in your biggest big from KY.
 Daddy made you cake,
and you held up FOUR fingers all day long. 

Buddy, you've messed with our lives, smiling your way deep into our hearts. 
 Yep, the "Eli Effect" has resulted in the loss of some valuables, the destruction of property, and lots of "oops".  No matter, your curious self is loved like crazy.   This is a team of explorers, and you fit right in. 
 You've brought a 1,000 extra smiles to the team. 
 Happy birthday, joy machine. 
 
 Love you big time.  4 is going to be awesome. 

Wednesday, April 02, 2014

Notes From a Blue Bike

"It doesn’t always feel like it, but we do have the freedom to creatively change the everyday little things in our lives so that our path better aligns with our values and passions."
 
Mark and I want to live as intentionally as possible.  We want to be purposeful in all the areas of our lives.  The small decisions we make each day about our money, schooling, food and entertainment add up to a bigger decision and a lifestyle.   Life in our world is fast, chaotic and much of it is outside of how we choose to live.  Our family needs to know what we believe and have a plan as to how to live that out. 
 
I have followed Tsh Oxenreider over at The Art of Simple for years.  So, her latest book, Notes from a Blue Bike was a must read.  This a memoir first, filled with stories about how her family got serious about living the life they wanted.  I can relate so much to the passions, lessons learned and changes of mind she relates as they moved from Turkey to Texas to Oregon. 
 
Tsh teaches through storytelling of experiences that have solidified her feelings on feeding her family, travel and schooling.  This is a read that feels more like a conversation with a friend.  Not a how to book, it simply is encouraging to me as someone on a similar trek to live simply.  Simplifying doesn't necessarily mean making life easy, rather is more of about focusing in and letting the rest go. 
 
Having learned much during her family's time abroad about eating and celebrating well, and focusing more on relationships than productivity, she struggles with incorporating these same principles into life when back in the US.  Her kids go to private school one year, then homeschool, then public school, and now plans to homeschool while travelling around the world.  I GET that.  We as families go through seasons, learning as we go.  The goal is to build our family life with intention, adjusting as we go.  
 
Tsh takes us on a bike ride, giving us time focus on our own families and what we value.  It challenges me to have a plan for how my family might live out lives. 



 
 
 
I am a BookLook Blogger and received a free copy of this book in exchange for my review. 

Sunday, March 30, 2014

IVs, Angels and Lavish Love: An Evie Update

(forgive the blurry cell photos)
 
We are now a week post-op with Evelyn, and are ready to start reflecting back.  Gratitude swells up first.  Team Evie prayed in such force over her, and it was felt.  Many prayers were answered, and we are incredibly grateful. 
 
The week leading up to the surgery prepared us well.  It was a week where God's love for us felt nothing short of lavish.  Two friends offered to do laundry, one offered to pick up groceries, another offered to send a maid to clean our house, and another brought dinner.  I said no to most of these things, but then a wise mentor kind of friend emailed me reminding me to allow others to walk this road with us.  She told me that if God prompted people to help, that I shouldn't stand in the way.  Honestly, I had started fighting some fear as we looked ahead at the next few months.  Not knowing this, these friends were used to send us a clear message.  God's love is lavish.  He's IN the details, and won't stop providing. 
 
Friday we arrived at the hospital with our little trooper, having followed the no food or drink orders. Our saint of a sister,  Jen, babysat the rest of the littles. 
 
Our mid-day surgery kept getting pushed back due to emergencies.  No complaints from us though, as we got time to snuggle with the patient, we LOVED our nurse and quiet is a rare gift.  Our surgeon's nurse was a gift, saying things that were such a comfort. 


 
 Soon enough, after a dose of loopy juice, a nurse came to get Evie.  We experienced again the feeling of walking her to the doors we couldn't walk through with her, where control is released.  We stood there for a minute, then turned to walk in the opposite direction, trying to figure out how to act normal. 
 
Mark and I opted for a walk in the sunshine, while we waited on word.  These moments are defining ones in our marriage, where we look at each other knowing that the other is the only other person who understands fully.  
 
Eventually a call came that Evie was fine, but the doctor was still working.  In that moment, we knew the surgery was taking longer than expected.  A while later, she was moved to recovery.  Our gift of a surgeon came in to tell us that the revision of her last surgery had become a complete new surgery.  So, we were moved to wait in an overnight room.  Again, another call came that she'd developed a fever and was thrashing around upset.  Later, as I was out getting water, a nurse came to see if one of us could come to calm her down.  The sweet news is that she calmed immediately when Mark entered, such a sign of how far her attachment has come.  In the future, a nurse said that her chart would be marked with "stranger anxiety" so that we can always be in recovery.  After her fever broke, Mark was rolled down the hallway on her bed, with Evelyn tucked safely in his arms, an image that won't be forgotten. 
 
For the next two days, Mark and I alternated between staying with her and our littles at home. 
One of the gifts of this stay was that we were placed in a big and quiet room.  After twelve hours of sleep, despite regular vitals and meds changes, our girl awoke puffy, but smiling.  We spent the AM eating Lay's potato chips and forking some Cheerios. 
Finally, when cabin fever set in, our wonderful nurse brought us a wagon and we hit the hallways.  As we trek along this medical journey, we are learning to take advantage of new things at the hospital.  This time, we hit the library for DVDs, picture books and People magazines.  
 Navigating a wagon and an IV pole around the hallways without knocking things over or ripping the tubes out of my girl is always interesting.   On this day, one of our angels appeared, a hospital volunteer, who has spent every Saturday for 17 years serving. She strolled us around the hallway helping, and then back up to our room.  Later in the day, she appeared with a blanket for Evie, as I'd mentioned that we'd left hers at home.  An hour later, she arrived with a baby doll.  Yet again, she arrived inviting us to a party being thrown by volunteers.  She walked us all the way, and then strolled us around through the party where Evie received a balloon, stickers, glow bands, food, treats, another doll and more.  This time it was her who experienced the lavish treatment.

Our second angel appeared when Evie's IV stopped working.  IV insertion has always been a several hour battle.  Her veins are whispery and fragile.  Thankfully, her chart has been marked for this, so now only an IV specialist is to attempt it.  The woman who was called in was one of the kindest nurses that we'd ever encountered.  She was wonderful to both Evelyn and I, and got the IV going on only two attempts.  We also learned from her expertise that our girl was likely a preemie baby. 
Finally on Sunday, we strolled out of the hospital.  So many prayers had been answered, and our strength, wisdom, gratitude, and appreciation for home and health deepened.
 
The lavishness continued for us, as my mom arrived that same day for a week and half to help us with recovery! 
 
Now, Evie is having spasms of pain and occasional fevers, but is incredibly tough.  She still smiles, and more than anything, just wants to be one of the big kids. 
 
Stitches will be removed Tuesday, and her next stop is Cincinnati Children's Hospital. 

Thursday, March 27, 2014

Upheld

We are connected, you and I. Our stories different, our kids’ needs unique, but I’m guessing we’re on a similar trek.
 
 
Is your family being refined and blessed by a medical needs child? Yep, mine too.
 
Are you worn out, and a bit fragile? Uh, huh. 
 
Feeling deep gratitude for the care of friends and family, but somehow just a bit alone? Yes. 
 
Your new journey intensely hard, but profoundly beautiful? With ya.
 
Worry that you are burdening friends with too much medical talk? Same here.
 
God is writing such stories with our families. We face heart defects, vision & hearing loss, blood disorders, cerebral palsy, kidney disease, deficiencies and syndromes. Some of us said yes to conditions pre-adoption, and others received diagnoses post adoption. Some have one condition and others have multiple. We are living in different states and our syringes administering different meds, but each of our hearts carry the weight of parenting a child with medical needs.
 
Connections have been made through Instagram, agencies and adoption events. We share stories and have quicker than customary, intimate conversations. We cheer each other on, pray, grieve, and follow along; carrying each other’s burdens in a tiny way.
 
Much of our experience is shared: We are worn out.
Our planes touched down on US soil, and it was game on.
Some test results have rocked us, and others have driven us to our knees in thanks to a great Healer.
Our faith is both depleted and intensified.
Some days we are hopeful, and others, full of fear.
Nurse, advocate, and momma are the hats we wear.
At dinners with friends, we zone out during talk about TV shows or vacations.
We are on our knees more than ever, but have missed lots of Sunday services.
The little bodies we care for carry surgical scars, and we ponder how their hearts will process it all.
Our calendar boxes are filled with doctor appointments, surgeries, therapies and tests.
Our marriages are stronger, but stretched thin.
We need only five minutes to know if a doctor is going to be the advocate we seek.
Late nights are spent researching and typing questions to mentor mommas in FB groups.
We’ll travel long distances for the best doctor.
IVs are dreaded.
Strength is found in the faces of our little people, and we lean in for the lessons.
Weekly, we coordinate babysitters, not for date nights, but appointments.
Ice cream is spooned up post doctor visits, because we must celebrate as we go. 


We know the ins and outs of our insurance policies, deductibles and medical caps.
Our medical needs child has siblings, and we wonder if they are getting enough attention.
Still, we are in awe of the profound work being done in the hearts of those siblings, as they soften with a deeper kind of love.
Our mailboxes usually hold at least one medical bill.
Our kids need to be catheterized, dilated and medicated. They need therapy, glasses, wheelchairs, blood transfusions, cochlear implants, casts and ostomy bags. They’ve had MRIs, echocardiograms, X-rays, scans and blood draws.
 
Check out No Hands But Ours to read the rest. 

Tuesday, March 25, 2014

Big Bro




This boy.   His technique is a little off, but his big bro skills are off the charts. 

Sunday, March 23, 2014

Celebrating Claire (and Periwinkle!)

Our team had all kinds of fun celebrating Claire Bear's big FIVE! 
 She had breakfast with her daddy, got to take cupcakes to share with friends at supper club,
took cousins to see Frozen with some TinkerBell/Periwinkle gummy goody bags,
and had lots of fun with her teammates.   
 Papa's artwork always makes us smile.  Thank you, Papa!  Thanks, Grandma and Aunt Janie, for covering her two loves: all things Frozen and Periwinkle.   

The big, fat, most awesome of awesomeness was this "Secret of the Wings" cake her cake boss daddio whipped up to fulfill her dream of a "Periwinkle cake".  Mark makes each child a special cake for their birthday and this one did not disappoint.  Claire's only birthday wish was one of her daddy's cakes.  Such a sweet memories, being baked.   


 Here's to five, my girl. Celebrating sweet you was so special to our family. 
We love you much. 

Thursday, March 20, 2014

Evie Update

OK, Team Evie, here is an update on our girl. 
Next up for her is surgery, which will be a fix from her bladder surgery in January.  Her bladder isn't reacting normally, so back under anesthesia she goes. 
 
Say a prayer for her at 12:20 tomorrow.  Pray for wisdom, precision and gentleness for the surgeon and medical staff.  Pray for an easier than usual IV.   Next, pray for a speedy recovery and that her bladder will react well. 
 This little lady is both the strongest and the weakest person that we know.  We've come so far medically and emotionally in the last four months.  It's been messy beautiful. 
 
Thankfully, our surgeon is a gentle advocate for our daughter.  Evelyn's a tough cookie, and we know that tomorrow will be another positive step toward healing. 
 
Our next big step will be 10 days at the Cincinnati Children's Hospital in April. 
 
I have set the Lord always before me: because He is at my right hand, I shall not be moved.
Psalm 16:8
 

Tuesday, March 18, 2014

Dedicated

 Our people.  We love them so.  When they are all spiffed up and smiling at the camera,
 it's a reminder again of how full our hearts are.  Yep, they sometimes make us a million shades of crazy, but they are also the best kind of awesome.  And high on cuteness too!
 
A few weeks ago, the littlest littles were dedicated at a special ceremony at our church. 
So, we got our fancy on. 


We had several rounds of
all four kids....please...please look at the camera attempts. 
Professional photographer friends,
we would really like to hang out with you sometime soon. 

 
It was a sweet ceremony with music, a blessing, & several families standing on stage with chosen verses for their new little ones.  

True to form, Eli used this opportunity for a little crowd winning.  
Big thanks to the Daniels and the Hensels for coming to support us. 


After some cake and punch (and another almost family picture),
we headed outside to soak in the sunshine.





 These little souls entrusted to our care are such gifts. 
 Again and again we promise to be intentional with the time given.  

 
 
Thanks, Mamaw and Papaw, for the matching dresses and tiny tie!

Playgrounding





 








Play, play, play. 
 They do it like it is their job. 

Friday, March 14, 2014

Interview with a 5 Year Old


What is it like to be 5?
You learn how to hula hoop and you know where everything goes. 
 
What does it feel like to be 5?
Good
 
What are you good at?
Tag Readers

What do you like to do? 
play outside
play Anna (from Frozen) with dolls
make cupcakes with mom
 
What do you like to eat?
eggs
tatos
strawberries and fruit and blueberries
I like everyfing.

What is your favorite song?
Frozen dance
 
What will you learn to do when you are five?
math
how to be nice
whatever Sophia's "fings" are
 
Who loves you?
Jesus, God, mommy, daddy, Eli....just everybody.  Everybody loves me. 
 
 
Happy Birthday, Claire Bear
You are light and sweetness, a gift to our family.



Thursday, March 13, 2014

Audiology & Ice Cream

 Oh my word, this boy. 
Today he made yet another CHOA visit feel like a fun afternoon outing. 
 
I got to spend the afternoon with just him, holding his little hand and carrying him down hallways.  He stole some hearts big time with that smile of his. 
 
His hearing was tested and though it isn't perfect, it's good!  No tubes!  Ice cream was totally in order.
 
So, little man, it's time to find that voice of yours.   

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