12.22.2013

If you Give a Girl a Birthday

If you give a girl a birthday in December, she's going to want a cake to go with it.  If you ask her mother to make said cake in the same week that she is also getting a family of 7 ready for Christmas, she will go to the Dollar Store and find a $1 ornament, cut off the hanger, press it into swirled icing with edible golden glitter and call it Done.   I mean, a Winter Wonderland. 

And hope she falls for it.  I mean falls in love with it.

When she falls in love with it, you will give her presents carefully selected because it's not her fault her birthday is in December.  God, what were you thinking to have ANYONE born in December other than Jesus?

She will love her necklace from her grandmother, her book from Birdie, and her watch from Violet.  She will even ADORE her new bike painstakingly bargain-shopped for and hidden in two cars and one church office by her father...

And ride it directly into the wall before you realize she's even on the bike.  Because you have five children and your reflexes are slower.

But her favorite gift will be the one that cost $2.50.  The idea you gave to your brother.  And he will get all the love and adoration.  Because he gave her CHEEZ-ITS.  And she doesn't have to share.  She held them.  She hugged them.  She kissed them.  I'm not kidding.  And then she said to all,

"Get Your OWN Box!"


Happy Birthday, Mia!  8 Looks GREAT on you!






12.14.2013

Magical Birthdays


Some birthdays are just birthdays...special days with the ones you love...maybe some cake and presents thrown in.  A little pause to celebrate, but no fanfare.  Others are bit more magical.  This year was one of the little extra special kind.  Each girl got to invite a few close friends

for candy house making at a snow covered table...a pink glimmery tree, chocolate covered pretzels, pink lemonade in fancy glances with ribbons...
 Do you think mom will notice if we just sneak one of those?
 Even Caroline and Molly got to come.  Poor Violet!  It was hard to convince her to let me take a picture.  She went sledding a few days ago and got a huge brush burn on her face.  She's beautiful to us no matter what!
 The girls loved their take home gifts....adorable cupcake look alikes made out of chocolate in the most adorable little bakery boxes.

It was even gently snowing outside.  Perfect!

11.12.2013

Not so great updates

In one half hour today, we received discouraging news for both of our daughters.  It's kind of funny how our life feels so very normal to us...yet if we would have thought ten years ago that R and I would each be on separate cell phones talking to separate doctors about separate daughters about significant medical issues, I think we wouldn't have believed it.  I remember when we were just parenting Noah, overwhelmed and exhausted.  Ha!

So, here's the scoop.  We finally have surgical news!  (Drumroll, please.). Violet will be having surgery SOMETIME in either Springfield, Mass, Boston, or Hartford on who knows what date with who knows what doctor.  Apparently, the Springfield surgical team is concerned about performing Violet's operation at their facility because they lack an ER or ICU.  If the meds don't work for V, her bleeding could get out of control.  If they decide it is not safe in Springfield, we are left BACK AT SQUARE ONE, needing to meet all new doctors in a new place.  Here is the really bad part.  IF Violet does not have surgery at Shriners in Springfield, most likely her surgery won't be able to be done as the Springfield team has been planning because Springfield has THE BEST ortho surgerical team.  As in, Boston sends their hardest surgeries to them.  If we have to have Violets final surgery done in Hartford or Boston it is much more likely that the surgical team will opt for a total amputation.  Simply because they aren't familiar enough with such a delicate procedure.   Violet's condition isn't common.

Can you IMAGINE if this little one has been through THREE surgeries and THREE times with a walker already only to have her foot amputated?  This is the very reason we picked Shriners in the first place....so she can have less pain as her bones grow and so that she has some measure of a foot to bear weight on.

So now here's what's going to happen.  The  Springfield team is going to consult with Violets hematologist about their latest concerns and will then meet as a team to decide.  Only trouble is that Violet's hematologist is Mia's hematologist...the one who just accepted a position as head of pediatrics in a PA hospital and is now in between here and there.  Yeah, cuz it's fun to coordinate medical care when you no longer have your favorite physician and you're left explaining who you are to a new dr. And you're trusting him to learn about your daughter and evaluate her history and make a life-changing decision.  oy to the vey.

OH!  And one more detail, violets surgeon shared on the phone while we talked that while we've been identifying Violet's blood disorder and getting ready for surgery, he has announced his retirement and won't be performing the surgery.  Thankfully, he is requesting permission to attend the surgery as an assistant in the room.

OK, so that's Violet.

While I talked to Violet's dr., R talked to Mia's dermatologist.  The biopsy results are in and (drumroll, please.) it doesn't match any rash in the computer data base.  They are going to call it dermatitis like they did a year ago, prescribe more steroid creams that we've already tried and see her in six weeks.

Again.

We could react to all this in so many ways and they've all sounded appealing, depending on the moment.   Currently I'm considering hot chocolate with a large splash of Bailey's in honor of today's snow flurries.  It sounds much better than trying to make sense of anything medically related.

After all, God's got this.  He already knows how this will go down.  Thank you all for supporting us and LOVING OUR GIRLS!



11.01.2013

Scare Away Hunger

This year on Halloween, we were invited to a Scare Away Hunger event in our area.  Everyone who came in costume and donated canned goods received free candy.  We had fun packing up over 3,000 meals that will be shared with those in need locally.  When we finished, we let the kids trick or treat at a few houses.

The Marx Brothers was the boys' idea and they had a ball.  Joe even carried a horn in his pocket.  :-)  Violet wanted so much to be Winnie the Pooh.  When she tried her costume on her whole countenance filled with wonder and delight.  It was a magical moment.  Mia decided to be Piglet "so Violet won't be alone."  I decided on pink sweats that could be worn again. ;-)  I'd say this picture pretty well sums up our family right now....ridiculously silly boys who love being brothers and adorably sweet girls who are still young and innocent.  Love them all!

10.27.2013

I believe in Christianity as I believe that the sun has risen: 
not only because I see it, but because 
by it I see everything else.
C. S. Lewis

10.26.2013

"You are where you are for such a time as this. 
 Not to make an Impression, but to make a Difference."
Ann Voskamp

10.25.2013

Update...Gabe

 
Lest anyone think poor Gabe has been forgotten...well, if you know Gabe, you know he wouldn't let that happen!  The boy who has always begged to homeschool is LOVING each and every day of being home...except about once a week when he dislikes a writing assignment and thinks it's a waste of his time.  All I have to do is offer him the chance to go back to traditional school and I have a compliant worker once again.  ;-)

By far his favorite activity has been mummifying a chicken (which coordinated with our study of Egypt) although he does LOVE when Randall takes them on Friday field trips.  They've hit the trails, of course, enjoying fall in New England.  Today they're at the butterfly house.  This winter, we'll hit more inside museums and such.

This fall, Gabe joined a new travel soccer team.  He's been challenged to play with some of the best kids in town and he's enjoyed himself immensely.  His team is undefeated in the league and they have their final tournament this weekend.  I'm thankful.  It got CHILLY here this week! 

Updates...the GIRLS


Praise the Lord!  Mia is so happy to be home and has so much more peace in her spirit.  Even her countenance has changed.  The pensive looks that were so prevalent have given way to days full of grins and giggles.  Her laugh truly bubbles up and I can't help but smile when I hear it.  She LOVES to be with her Mama.  When the fall started, she needed to be wherever I was ALL.THE.TIME.  Seriously, like an 18 month old.  She would cry when I shut the door to take a shower.  She would literally cling to me if I had an errand to run and she would be home without me.  She still loves to be with me, but I see less fear and more peace on a daily basis.

Last year was one of transitions.  Learning how to be a family of seven.  Learning how to have a sister.  Learning how to have daughters.  They would be so emotionally spent from school that they saw each other as the competition for my attention.  They had no idea how to build a relationship with each other.  Mia was so afraid she would lose her Mama and Violet was so independent from living so many years on her own.  This fall has been one of learning how to be in a relationship with one another.

Slowly, this year I think they've fallen in love with each other.  I can see a little sparkle when they look at each other.  I've caught them holding hands many times.  Or hugging.  Or singing.  Or dancing. It helps to have three older brothers to conspire against!  wink wink

Homeschooling has been a huge blessing in regards to this.  They love to snuggle up together with me to read books and work on projects together.  The biggest gift is the TIME they have together.  Time to work and play and everything in between.  LOVE IT!

As for medical news....Mia is responding well so far to her new medicine.  She had a biopsy yesterday to search for clues regarding her horrible rash.  It'll be two weeks before we know anything.  Violet had a challenge test of a medicine to treat her Von Willebrands.  It worked!  Now we're waiting for Shriners to call and schedule the surgery.

In the meantime, we're in "simple" mode here...reading, writing, 'rithmetic...lots of projects...and visions of great books by the fire soon!


10.13.2013

Randall Completes His First Half Marathon

 He did it!  He did it!  A half marathon!  Whoa!

 This past year, Randall decided that he wanted a change in his work out routine and wanted a cardio challenge.  So, he started running a few miles.  Since he was doing those alright, I suggested he do a 5K.  But then he was running on a Sunday morning before church and he ran crazy fast (for him) and had an even crazier thought...why not train for the Hartford half marathon? 

And so...he did!  Yesterday, he ran through the streets of the city with thousands of others.
Making it even MORE FUN was the fact that our Associate Pastor was running the FULL marathon that day! 
I've gotta' say...I've never been to a race before.  The atmosphere is totally addictive.  I also have to say, I'm so jealous.  I've been wanting to do this race for awhile but don't have an ok from my back dr to run yet.  :-(  But I got to live vicariously through the guys!

John's wife Kelly and I had a blast trying to catch them on their routes and entertain her toddler and preschooler for hours curbside.  They were awesome and it took me back to the days the boys were little.  Happy sigh.

Will he run again?  He's not a huge fan of running, but he decided the race itself was a blast...next goals are a triathalon and the hope of one day doing a Half Iron Man Competition.

Hey, you only get to be 40 once!

10.09.2013

When Your Life Spins in a New Direction...Go Pumpkin Picking

Part of our "healing plan" around here requires slowing down and focusing on what matters most...relationships.  So when we got word of Violet's latest health need, we decided a morning of fun was in order.  After all, we spent all our evening hours last night answering questions about blood and needles and hospitals.

We grabbed our favorite surrogate grandma, Linnie, and headed to the pumpkin patch! 
Can't believe how tall Mia's getting!
 Impromptu hand holding.  Love it!
 He  searched high and low for the BIGGEST, of course.
 Love my littles!
 You can just see how much they adore Mrs. Z!
 And come on...sheep?  What's not to love?!

Yes, we came home to journaling and math and all the other things that must happen in homeschool...but by way of Dunkin Donuts...cuz you know, New England runs on Dunkin!


10.08.2013

Our Daugher has a Blood Disorder

Our daughter has a blood disorder.  Not that daughter.  The OTHER daughter.

Yeah, that's what I said.

Remember the surgery Violet was supposed to have TODAY?  As the Chief of Staff of Shriners Hospital was preparing for the operation, he read a note in her file saying, "Recommend patient have further hematological testing done before any additional surgeries."

HUH?

Back up.

When we first adopted Violet I noticed a whole lot of bruising on her little body.  As in, we're in China and I'm thinking, either awful things were happening in that orphanage or she must fall a lot.  I mean, she has one almost "normal" leg and the other is much shorter and there is no real foot.  Isn't that what you would think?

Naive woman.

If there's anything Violet isn't, it's disabled.  She's differently abled, sure.  But ain't no dis going on.

And yet the bruises continued to appear after we were home.  I took her to the pediatrician noting my concern.  He sweetly smirked and told me she had one leg.

Ignorant doctor, I, the now Enlightened One, thought.  :-)

He suggested she fell a lot.  I knew otherwise and asked for testing.  Whamo!  Blood clotting issue.  Put her on Vitamin K, they said.  So we did.

And we had surgery.  And everything was fine.  And another surgery and everything was fine.  And then another...which wasn't.  Vit K is not what she needed.

She bled.  A lot.  After surgery, we all felt further testing was warranted. 

And HEY, we know a great hematology team!  Can we get a discount?  A 2 for 1 deal?  Is that wrong to joke about?

So we met with them and they sent a report to Shriners which included a teeny tiny detail that we don't recall hearing and no one at Shriners noticed until this week.....a note that said,

Further testing recommended before child undergoes surgery.

Um, that would've been today.

We have no idea where the miscommunication lies and in the end what matters is...

THANK GOD the Chief of Staff reviews files and carefully plans for each surgery!  He called and we were immediately seen by the Hem team on Friday and testing was run...

And Violet has Von Willebrand Disease.  Apparently, it's the most common blood disorder.

Did you know that?  Me, neither.  But my nurse sister did.  Show off.  8P!

Essentially it means that Violet's body doesn't produce enough of a certain protein to be able to stop bleeding efficiently.  That's kindof a big issue...like if you're having surgery, or if you're a girl who will someday hit puberty and maybe have kids....so yeah...it's pretty important to have treated.

Violet's going to have a challenge test on Friday....when Mia has her transfusion.  They'll be checking to see if taking a certain medicine will bring the numbers up to where they need to be.  So we'll have TWO GIRLS from TWO DIFFERENT FIRST MOMS having TWO DIFFERENT infusions at the same time in the same hospital room in the same hospital.  What are the chances of that happening?  I mean, really?

If the challenge test works, then she'll be able to have her surgery as long as she admits a little longer to the hospital and runs a drip of the meds....she'll need an additional med for a time...then she SHOULD be good until puberty hits.

But you know....in this house, we just try to roll with today and not really make plans for tomorrow...it seems to work better for us that way.

We'll keep you posted on how Friday's challenge test goes...good thing they have jello on the menu at the hospital.  Violet does NOT like needles...but big sister Mia has been telling her all the great things about CCMC...the menu that's just like room service, the prize cabinet because you're brave, chocolate milk...

I think Friday night calls for a nice bottle of wine for the parents...you know, after the littles have fallen asleep with visions of SUGARplums dancing in their heads...



10.01.2013

Why We Gave Up School...Sort of

I've written this post over and over in my mind this past month, thinking about just how to share the twists and turns our life is taking.  It's certainly not what we planned...but as we like to say around here, it's more than we could've imagined!

Last spring, Mia began to struggle emotionally again.  Her early years of abandonment left really deep scars.  Trust is so hard for her.  Fear is so instinctual.  As she went to school full time last year, we could see signs that she was falling apart, a little each day.  Terrified of doing the wrong thing, she was a nervous wreck about everything.  She wouldn't even talk at lunch in case she would run out of time to eat her food, or get in trouble for talking too loud.  She was wreck every morning before school and confided that she spent the day worried about getting in trouble.  This from the child that never clipped down!  It was clear to us that she just wasn't ready to be away from home yet.  If you think about it, she got three less years with a parent than our other kids did....she was operating with the emotional skills of a much younger child.

About the same time, she began to struggle again with a latent rash newly manifested.  This time, worse than ever.  Her arms, legs, knees, shoulders, ankles, wrists, hands, everywhere covered in sores that scaled and scabbed and itched like mad.  She would wake throughout the night crying, begging me to make the itch go away.  In the past year, we've seen six different doctors and tried several different medicines.  No one has seen anything like it.  And no one knows how to treat it.  The best guess is that it's related to either her medical condition or stress.

We soothed and rocked and lotioned and benadryled with the best of them.  Nothing changed.

As horrible as the rash is, it's the tip of her iceberg.  She's been battling nearly constant nausea for over a year.  It seems that the worse her iron numbers are, the worse her stomach feels.  Which leads me to her annual MRI.  In July, we learned that Mia's numbers have not only not gotten better over the past year, they are twice as bad.  As in, dangerously bad.  Clearly, her meds are not working.  In consulting with her hematology team, we decided to try a newer medicine.  She was set to start the week school was to begin.  If it didn't work, she would need to admit to the hospital regularly for several day stays for an IV drip of an intensive chelating med.

And that...just weeks before school was to start...is when we decided she was not returning.

She simply isn't in a good place to go.  She's not.  She needs the time to itch and cry and fall apart and get picked up and lay on the sofa with a good book...and HEAL.  As a new friend of mine said, "You can't learn with a broken heart." 

And so now she is home.  While the stomach still hurts and the itch is still there, her smile is returning.  She is forever by her mama, soaking up every moment she can, her little adoring eyes begging for one more embrace, one more word of encouragement, one more smile.

And then there is Violet.  Sweet, spunky Violet.  How much she's grown this year!  How far she's come!  We watched so proudly as she conquered kindergarten last year, learning a whole new language and learning to read...not just English words, but facial expressions and nuances and all sorts of things we don't normally think about.  But there was one thing we noticed that haunted us as parents...

A year in school left her still more comfortable in an institution than she is in a family.  While she succeeded academically, we could see that she preferred to be left alone to figure life out by herself.  Not the healthy independent way, but in the no one's ever been there for me so I'm better off figuring it out myself kind of way.  Not good.

Please don't misunderstand.  She's going to need every ounce of her independence to look at the world and say, "I don't care what any of you say.  I'm beautiful, competent, strong, and able."  But her heart needs to KNOW that she is loved and that she BELONGS to a family and that we BELONG to her.  Because that is crucial to being a whole person.

And so....we decided there was not a moment to lose.  Mia was coming home...Violet should come, too.

And that left Gabe.  The one who has begged to homeschool forever.  Our Davy Crockett meets Grizzly Adams meets Survivor Man hates learning in a sterile environment.  He loves nature and biology and hands on learning...the boy who started school loving to learn was beginning to hate it.  Combine that with a few lovely instances of bullying and his academic success was in serious decline.

It was time to make a change.

And so here we are...in a place we didn't quite expect to be

.  And yet, we feel God's hand in every minute of it.  My days are filled with teaching these precious kids and continually pointing them to the God who loves them more than I ever can.  I'm part mom, part cheerleader, part schoolmarm, part Mr. Rogers.  It's a lot of hats to wear and without God's strength, it's overwhelming.  But his grace is enough.  Can I get an Amen?

How long will we be living this way?  We truly don't know.  But we're confident that God's leading this little detour so we figure we'll just let Him worry about it.  There's enough worrying in this house anyway.  ;-)

9.11.2013

Five Years Later

 Five Years Ago We Fell in Love...
Still Falling...

Happy Gotcha Day, Mia!  Love you to China and back!

Always Reaching

The clocks strikes.  It's well past one as I quietly slip into bed.  He's asleep, chest rising and falling slowly, tucked away in dreams.  Yet, even as he sleeps he somehow knows I'm there and he reaches.  His hand finds mine.  He draws me to himself and I am reassured.  Without a word he has said a million things.

I love you.

I want you.

I need you.

I am here for you.

I smile in the dark, knowing that even as he sleeps, he thinks of me.


8.02.2013

Looking Good....

Speaking of looks, we're going through a little remodel here on the blog.  We're headed to the Midwest this week to visit family and friends.  While we're there eating WI State Fair cream puffs, one of my besties is going to do a little photo shoot of our crazy crew.  You know, it's been a year since Violet joined us and it's time for her to be up top with the rest of us, don't ya think?

Look for the reveal in late August.  I've been asked to do some more writing and I've missed it!  So, we'll be adding some topic pages and such.  I excited for what's ahead...if you're lucky, we'll share the cream puffs!

7.31.2013

The Look is Back



The look is back.  The deep, haunting expression as familiar now as my own breath.  She cycles, our first-loved daughter, twirling a dance between whole and broken that leaves me undone. 

The anger.  The bitterness.  The jealousy.  The fear.

One day a happy princess, all smiles and rainbows.  The next, withdrawn, guarded, and closed.  Little issues made monstrous through her lens of neglect.

We speak the truth…HER TRUTH…HIS TRUTH…day in and day out.  Some mothers say, “Did you wash your hands?” a thousand times a day.  I murmur, “You are safe.  You are loved.”  Does she hear me?  In the deep places of her soul where her heart is locked, does the Word reach there? 

There are days my response flows effortlessly, grace pouring out like water in sunshine.  But then there are the days like today when the words are a choice.  A deliberate forcing myself to pause and speak life to her.  There are things to do!  There are meals that need making and jobs that need doing, and clothes that need washing.  Forever there are clothes that need washing!  How can we still be dancing to the same wrong song?

Recently, Mia has had a horribly itchy rash return that took six doctors to diagnose.  Could it be a response to her overtaxed liver?  Possibly.  It’s also very possibly made worse by stress.  She has scratched and picked at her skin until she has scarred.  The metaphor is quite profound.  Her fear has literally led her to physical pain.  Oh but the emotional pain…so much harder to heal!  The skin?  Special soaps, steroid cream, herbal remedies.  The heart?  Therapy, endless hugs and snuggles, words of affirmation, and most of all THE WORD.  Washing over her.  Pouring over her.  Washing her clean.  Filling her soul.

Someday, Mia will love and trust with crazy abandon because the God who shaped her adorable nose and her chocolate eyes did something even crazier…coming here to stop the cycle of pain and hurt by defeating the devil and overcoming the world.  And someday Mia will dance in Her father’s house in fields of grace and these days that feel so long will seem but a moment.  Now we see but dimly.  Then we shall see face to face.  And how radiant she will be!  Until then, we dance.  And Randall and I, we’ll thank God every day for the gift of holding her while the music plays…

7.01.2013

Author Day

LAST week, on the next to last day of school.....(oh MY did they go long this year. YIKES!) J and I got to go to "Author Day" in Mia's class.  Again, she was ADORABLE.  The room was ridiculously warm, but that didn't keep Mia down.  She sat in her row of classmates with a sweet little smile on her face.  Each student in turn stood and read their script introducing us to "author day."  Mia read sweetly.  She then proceeded to sit down and very gently remind the boy next to her that it was his turn. (The Little Mama even at school!)

The class then stood and sang an "author song" for us. Finally, Mia showed us her portfolio of writings from First Grade.  It was fun to see the progression throughout the year.  Sooooo proud of her. 


Mia's First Swim Meet

We got to watch Mia in her first swim meet tonight!  She was so precious.  Her coach called her name for her first event.  She got her race card. I could tell she was a little confused. I was so proud of her--I saw her go up to the coach and ask for help. That may not seem like much, but advocating for yourself with grown-ups is not always easy.  Her coach helped her find the right lane.

J and I went over to watch and cheer.  Mia waited in her lane.  There was no one in front of her. But that doesn't mean she was next.  (hard to explain unless you're there.)  Several boys got into the pool to swim their backstroke heat.  The gun sounded. Mia, seeing a race start with noone in front of her, simply hopped into the pool and started swimming with the boys. woops! Not her race. She went all the way down and her coach helped her back to her spot.  He patted her on the head and said: "And you're swimming free-style."

A few minutes later, Mia got on the blocks for her first (real) race and off she went.  Yes, she's got some work to do on that start (knees first into the water), but I simply loved watching her.  Yes, she came in dead last, but I was proud none-the-less.

Later on she actually did get to swim the back-stroke. She beat out two other girls and came in a very tight second. WOW! Go Mia.

                                                                  First Race
                                                             Getting ready for the back-stroke
                                                                 Take your marks.....
                                   Hmmmm. Maybe she actually WON!  (that's her in the near lane)

6.24.2013

Strawberry Festival

We finally all went to our Town's annual Strawberry Festival.  We saw friends, ate Strawberry Shortcake and funnel cake and had fun!



                                (Here we are at the end of the festival celebrating 17 years of marriage.)

Noah


                            Noah has been grilling lately and doing a mighty fine job. Go Noah!

Devil's Hopyard Camping Trip

This weekend I took Gabe, Joe, their three cousins and two friends from church on an over-night camping trip to Devil's Hopyard St Park.  It was a blast. The boys were GREAT and we had FUN. Camp fire. Swimming (apparently contrary to the desire of Park officials). Nice hike. Critters.

Gabe loves the fire.






                                           (whoops! Sign seen only AFTER the boys had a fun time swimming.)

                                            Eastern Hognose Snake-.-head puffed out (Gosh, I HATE snakes!)
(No. He didn't drink the water. :-))


                                                                  "Size matters not!"