Today?  Today we celebrate the fact that you are now SIX!!!

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You waited a long time to be six, my girl.  It seemed like a much longer wait that the norm, probably because your older brother was six during the whole year you were waiting to be six.  But now, you’re here!  You’ve arrived.  You are all the fingers on one hand plus one from the other, and you are thrilled to tell everyone you are FINALLY six.

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You’ve definitely changed a lot in the last year, sweet girl.  You’ve grown taller, more independent, and you started full time school.  You’re thriving this year, and it’s a joy to watch.  You are beginning to know who you are, and you’re liking what you find.  This year, you started taking dance class, and your teachers love you as much as everyone else who crosses paths with you.

Oh, and did I mention?  You’ve got some serious sass.  Sass for days.  And most of the time, it makes me giggle.

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Favorite color – pink and white

Favorite animal – ponies and unicorns

Favorite food – oatmeal with blueberries and eggs

Favorite movie – Moana, Frozen, and Little Mermaid

Favorite thing to do – play with my dolls

 What do you want to be when you grow up? – a doctor, and a princess

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This year you get to celebrate with your first REAL birthday party!  We ordered the pretty invitations, we reserved a fun place to play, and we searched for the perfect tutu skirt to pair with your birthday shirt.  You’ve had a countdown going for quite a while, and today is the day!  It’s time to celebrate YOU, Julianne.  You are so worth celebrating.

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Happy sixth birthday, Julianne!  We love you!

“Mommy, I have another blister.  Can I pop it all by myself?”

Her voice was so hopeful.  She knows what to do.  She’s watched us pop more blisters than I can keep track of during the two years we’ve had her home with us.

“I don’t know, J.  The needles are very sharp.  How about when you’re seven?”

I was hesitant.  She just turned six, so maybe I could buy myself almost 365 days before having to take this big step.  I confess that part of me just wasn’t ready to give this task over to her; I’ve only been her mama for two short years and I want more time to be the primary caretaker of all of her boo-boos.

“Mommy, I promise.  I can do it.  I promise.”

Giving over control of wound care is significant in her world.  It’s a step that says, “I trust you.”

And so, I did.

Ever so carefully, she pulled out the supplies she would need.  Sterile gauze, sterile needle, alcohol wipe.

She wiped the blister sites clean to disinfect them.

I had to help her a bit getting the cap off of the needle.

She took it from me with confidence and, while I watched, poked holes in those blisters and drained them.

And when she was finished?

“See Mommy!  I can do it!”

I’m so proud of my little butterfly and this big first.

She’s braver than most.

I did take a video of this for her own memories, but I’m not sharing that publicly.  I have uploaded a portion of the audio file… her little voice is too precious to not share.

It’s a joy to be able to share my heart at No Hands But Ours every month. This post is special to me.  I don’t pretend to know everything about parenting or adoption, or parenting through adoption.  But there are some things I DO know…

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This is what I know…

I know that time doesn’t heal all wounds.
I know that, sometimes, intentionally seeking out help is necessary.
I know looking different isn’t a bad thing.
I know that hearing a word of encouragement has more impact than I dreamed it could.

I know adoption can be hard.
I know adoption is a gift.
I know adoption isn’t for everyone.
I know caring for the orphan is sometimes hard, is always a gift, and is for everyone.

I know I can do things I never thought I could.
I know walking in obedience means being depending on God.
I know that He equips as He calls, and never leaves us stranded.
I know His mercies aren’t just new every morning, they are also fresh every hour and minute of every day.

Click here to view the rest of this post.

“Mom.  One day, when I have good skin all over me, I can have earrings, right?”

*gulp*

Because, truth is, unless there is a radical gene-altering cure found, EB is a part of who she is, and will be a part of who she is for all of her days.

Epidermolysis Bullosa (n.) :  loosening of the epidermis, with extensive blistering of the skin and mucous membranes, occurring either after injury, or as a spontaneous and potentially dangerous condition…

“Well, you know, unless something changes, you will probably have EB for your whole life, even when you’re a grown-up. And that means that you might be able to have earrings, but you might not be able to.  It will depend on how your ears are when you’re older.”

She knows this.  We talk about it ALL. THE. TIME.   She sees the differences between my skin and hers, between the affected parts of her and the parts that are rarely affected.  She tells me she wishes she had skin all over; she considers the EB-affected parts of her to be not-good-enough.  I tell her all parts of her are skin.  Some parts have EB, and some parts don’t as much, but all of her is skin, and it’s all good.

“But Mom!  When I’m in Heaven, I will not have EB anymore!  And guess what!  I can wear earrings there!”

For now, her ears sport blisters and scabs as their adornment, though, and she finds joy even in that, telling me that her scabs look like earrings, and aren’t they so pretty?

Yes.  Absolutely.

You are beautiful, my girl.

The last day of February marks World Rare Disease Day.  It’s when people worldwide band together in an effort to make widely known the little known conditions they, or their loved ones, live with on a daily basis.

I’m often asked the same types of questions over and over by people curious about EB, so I’d like to address them again in honor of her, this day, and all others who live in quiet anonymity, their conditions not recognized by the flood of cash it takes to fund research for a cure.

  1.  “Will she always have this?”    Yes.
  2. “Will it ever get better?”  Unknown.  It’s possible.  It’s possible it will just ebb and flow her whole life like it does now.
  3. “Is there a cure?”  Not right now.
  4. “What does her condition require?”  Daily wound care.  Preventative padding/bandages/dressings to keep her fragile skin safe.
  5. “Does it bother her?”  More as she gets older, mainly because of the reactions of others.
  6. “Does it stop her from doing anything?”  Only when we make her stop!
  7. “Does it hurt?”  Yes. It’s also pretty itchy.
  8. “Is there anything I can do to help?”  Yes!  Visit www.debra.org and check out the ways to help families.  One of the biggest blessings in our life is the DEBRA wound care closet; they supply very expensive wound care items for families who may not have insurance coverage.  They also send boxes of supplies to EB families… those who are brand new to all of this and just starting out on the learning curve.  A donation in Julianne’s name would be appreciated!  
  9. “Is there a cream or lotion that would help her?”  Not really.  There are medicines that treat symptoms, some better than others.  But the root cause of EB is a genetic mutation.  Though it looks like it’s all on the surface, it’s actually deeper in the skin, and also affects internal parts of her like her mouth and throat.

Epidermolysis bullosa is not a new topic on this blog.  I’ve written a good bit about it because it’s something that has become a part of our lives and has changed us.  Seeing her persevere in the face of a condition with a genuine smile on her face brings me joy.  Don’t get me wrong, we have bad days…. really bad days, but she never lets the bad overtake the good, and I think that’s a lesson we all need to learn.  She’s a fighter, and she has turned me into a fighter.  This condition isn’t passive, and so we aren’t passive.  We face it head on, unafraid, knowing that no matter what, there WILL  be earrings in Heaven for her.   You see, this life we are living now is just the start.  We believe that there is more than this, that there is a Forever that blows our ideas about “forever” straight out of the water.  Julianne believes this, too.  She knows that her life now is just the beginning; that there is an eternity to be spent with the One who made her, and moreover, that the time after this life is over will see her clothed in a body free from all of the suffering it will know on this Earth.  EB?  It’s awful.  But it’s not everything.  Jesus?  He’s everything.

So yeah.  We pray for a cure.  We fight for it.  We help to fund it.

We also keep our eyes up.  Constantly seeking the God who put us together, the One who knew that our daughter would have to walk through this, the Giver of hope in all things, even in EB.


 

Some of my past posts about EB can be found here…

Visible

Lavender Jade

There is Nothing Wrong With Her

 

 

Yesterday was the anniversary of the day we arrived home with our newest daughter.

I will never ever forget the emotion flooding through me as we de-planed and walked down the hall to the escalator.  I will never forget the light-headed feeling as I stepped onto the escalator; I tried to hold Julianne since escalators were a new thing for her and I was afraid she would fall, but I was so exhausted after 27 hours of travel, it was almost a relief when she demanded to stand on her own and hold on to the moving rail.

The crush of joy when we first began to see the faces of those we loved who had come to cheer us on during this final step into our new Forever.  Unforgettable.

View More: http://minttobe.pass.us/julianne
@lifeintolikeness… photography by Mint To Be

Oh… and when I remember those moments.  Julianne had never been the recipient of so much excitement in her young life!  Everyone smiling, everyone cheering, everyone so obviously thankful for HER.  It had to have been so overwhelming for her inexperienced senses.

Two years is a decent chunk of time, and she has changed so much since that day.

We all have changed.

Two years doesn’t mean things are easy now.  A friend just asked yesterday how things are now that we have been home for two years.  Truth?  It’s still hard many days.  The walls she had built to protect herself have slowly been through the gentlest of demolitions, but it takes time.  So much time.  So much intentionality.  And now that the walls aren’t there, we see more of the stuff she was hiding inside for years.  A baby who learned that the best way to handle hard things was to put on a brave face and pretend all was okay.  Now she shares her emotions, but it’s not her default.  Last week, I knew she was angry with me about something, but as per her norm, she tried to shut me out.

“Are you angry with me, Julianne?”

And in the smallest of voices, a murmured “yes”.

FOR THE FIRST TIME EVER, the inclination to freeze in moments of tension was halted.

View More: http://minttobe.pass.us/julianne
@lifeintolikeness Photography by Mint to Be

Two years home.

We’re still making progress.  We have not “arrived”.  Looking back on our homecoming, I find myself wishing I could take myself out for a cup of coffee and whisper all of the things I know now.  I wish I could tell myself that there would be days when I would wonder what on earth we were doing; days when I would doubt myself, my parenting skills, my ability to be who she needed me to be.  I wish I could show two-years-ago me what daily life would be like, but that the stressors involved with parenting a child with a chronic condition would be balanced out by the joy that comes by seeing her twirl around the house in the fluffiest of tutu skirts.

Two years ago I fully believed that by the two year mark we would be settled, and living the life we had before, plus one.

Nope.

Not even close.

Our life now does not look anything like it did before.  And you know, I’m okay with that.

Our life?  It’s not charmed.  It’s not ordinary.  It’s not easy.

I dare say that EVEN WITH all of the challenges, this life we live is spectacular.

Happy Family Day, my crew!  And now, we march into Year Three.

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photography by Laura James Photography

Today marks the day when we saw Julianne for the first time face-to-face.  We had loved her from afar for nine long months, and finally, we saw her.  I will never forget the feelings from that day.  The way my fingertips felt numb with anticipation and nerves.  The way when we rode the elevator to the floor where this meeting was to happen, we saw a curious Ayi pop her head out of a doorway, and when I asked if Julianne was in that room, our guide nodded yes.  The surreal knowledge that we were on another continent, in our daughter’s city was quickly eclipsed by the even more surreal knowledge that we were now in the same building, on the same floor, about to be IN THE SAME ROOM!

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Leaving the office building & seeing a hint of a smile. @lifeintolikeness

 

I couldn’t even think clearly enough to process the enormity of what was happening.

One Less in one way.

One More in so many more ways.

She’s a daughter, friend, student.

She’s a sister, granddaughter, niece.

She’s a dancer, snack-loving, ice-cream-bowl-licking little ball of fire.

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two years have changed you, my Little One; two year have changed all of us

These years have grown us, tested us, tried us, frustrated us, and brought great joy.  The journey really did begin on that day, and it’s not over yet.  Adoption isn’t a sign-the-paper-and-done kind of thing; we are walking this out every day, every moment, learning, falling down, and being picked up by our gracious Father.

Happy J-Day, my girl.  I’m so glad you’re ours.

I’ve got pet peeves.  Everyone does, right.  That ONE thing (or multiple things?) that get under your skin and irritates you more than anything else in the world.

My personal list of pet peeves is embarrassingly long.  I cannot stand the sound of people chewing.  I am deeply agitated by political posts on social media.  People who race down a “turn only” lane so that they can cut everyone off at the front of the line in traffic really steams me. There is another pet peeve that made an appearance, and seems to be growing in strength… it’s the extreme dislike of having to repeat myself multiple times.

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Pet (noun)  A thing particularly cherished.

Peeve (noun)  A source of annoyance or irritation.

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Have I ever fully understood the term I throw around so carelessly?  I confess I never thought much about whether pet peeves were good or bad.  Really, I just accepted them as fact.  There are things that bother me, end of story. What I’ve discovered is that it’s not really all that cool to have pet peeves.  Yeah, it’s assumed that we all have them, and to some degree, there will probably always be those things that get under my skin and irritate me. When I make them into something valued, cherished… something I am proud to have, they’ve suddenly jumped from being a joke to being a problem.

“Mom, what’s for dinner?”

“Mom, what are we having for dinner?”

“Mom, are which vegetables are we having with dinner?”

“Mom, what are you making?”

It’s a part of my life right now, and by the time we get to the third or fourth variation of the same question, my nerves begin to fray.  Usually, this ends in one of two ways.  Either I patiently explain I’ve already answered the question and refer them to a sibling who can help with the query, or I yell.

Mostly, I yell.

It’s not something I’m proud of.

But… it’s a pet peeve, right?  It’s going to bother me, NO MATTER WHAT, right?

No.

I say no.

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These irritations of mine don’t have to be cherished or valued parts of who I am.  I dislike the impatience that arises with the irritation I have cultivated by allowing this to be something that is okay in my life. 

The fruit of the Spirit is laid out pretty plainly for me in Galatians 5.

love

joy

peace

patience

kindness

goodness

faithfulness

gentleness

self-control

Every single time I choose the fruit of my pet peeve (frustration, impatience, harshness, anger), I am simultaneously choosing against the fruit of the Spirit.

 *gulp*

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It was a particularly harrowing trip to Costco with my four kiddos when the Lord chose to whisper this truth to me… deep to the inner most parts of me… clear as a bell. Conviction washed strong over me in that moment as well it should have.

Yeah, I repeat things umpteen times per day, and yeah, it’s probably always going to be something that tends to grate on my nerves, but it’s not going to be my “pet” anymore.  I’m not going to let it be something I’m okay with owning. I’m not agreeable to the poor fruit it grows when I let my pet peeves become something cherished and valued. They are not my pets, these things that annoy me.

I say the words out-loud because there is power in the spoken word…

“See you later, my pets. I regret the time I invested in your well-being, for you brought me nothing but the inability to see the gift standing in front of me; you are no longer welcome here.”

And now, to walk the truth revealed by my kind Father; always the hardest part, always the place where the deepest wells of grace are found.

*deep breath*

I’m grateful for the fire that refines.

In my house, I am the puller-of-teeth.  Something about it gives Hubs the eeby-jeebies and he just cannot handle it.  I, on the other hand, posses the necessary personality traits to get ‘er done… namely, the ability to keep on yanking when I know that sucker is ready to come out, and tune out the wails coming from the wide-eyed child I’m face-to-face with. I’d say it’s my spiritual gift, but that’s not anywhere in the Bible, so I guess it’s just a blessing I bestow upon my family.  You’re welcome, kids.

Hubs?  He’s afraid of hurting them.

Me?  Pain = money under the pillow, kid, so deal with it.

Obviously there needs to be at least one puller-of-teeth in every family, and I am proud to hold that title.  Also, I am the unclogger-of-toilets, but that’s a tale for a different day.

Teeth.

I cried a little when my firstborn lost her first tooth.  It was momentous.  I pulled it, but then she took over and started pulling her own teeth shortly thereafter.  What can I say? She is my mini-me.

I didn’t really fuss much when my boys lost their first teeth beyond bemoaning the loss of the sweet little grins I had associated with them for the first years of their lives.  Adult teeth just don’t look right on a child’s face for a while.  I can say that and you know it’s true.  The freshly-lost-tooth look is cute.  The partially-in-snaggle-tooth-craziness can be a little rough.  I’m right, aren’t I?

Julianne lost her first tooth on January 11th.  I’ve known it was getting wiggly for a while, but didn’t mess with it much.  Truth be told, I was thrilled to see it wiggle since her dental x-rays indicated that she might have her adult teeth come in behind the baby teeth which would require a pulling by a more professional puller than I.  I checked on it periodically, and one day it reached critical mass.

Critical mass for Miss J looks different from the others.  The others?  They kept those bad boys hanging on my a string as long as they could (GROSS).  Her?  She was so overwhelmed by the feeling of the loose tooth I knew it needed to be gone.  Sensory input is a funny thing, and when a child doesn’t have much sensory input as a baby/toddler, things in the brain get a little out of sorts.  She both craves input, and also is easily over-stimulated by too much input.  It’s a fine line we walk, and this tooth was not helping things out.

So, that evening, after wound care time was over, she was fussing about the tooth.  I asked her if she wanted me to pull it out, and she said yes!  Woohoo!  I grabbed a square of sterile 4 X 4 gauze (the benefits of living with a fully stocked wound care closet), and went to work.  It wasn’t *quite* ready.  It took a little effort.  I know it must have been uncomfortable.  But she just sat there.  The same way she sits when a dead, dystrophic nail needs to be removed and she asks me to pull it off for her.  I pull, I check with her to monitor pain levels, and she tells me to keep going.  She’s the bravest.  Pulling teeth is pretty much like pulling fingernails.  Wonder if she’s going to start requesting a cash deposit when she loses a nail, too.  Hmmm…  I’d totally work that angle if I were her.

A few minutes later, my little nugget lost her first tooth, and to say she was excited would be quite the understatement.  Quite.  She was beyond out-of-her-mind thrilled and this video clip proves it. 

She was experiencing a first.  JUST LIKE ALL THE OTHER KIDS.

She was getting to partake in the mysteries of the tooth fairy and the sweet pile of cash left in her handy little tooth-shaped pillow.

She felt different, more connected, more FAMILY in that moment, and truth be told, I felt all of those things, too.  More like her mama for having pulled that first little tooth out.  More connected to her via this experience, more FAMILY as we celebrated this occasion in her life.

Her personality is such that everyone in the room knows exactly what she is thinking.   The longer she is home the less of a filter she has.  She used to wear a mask to hide her emotions, but as time passed, she slowly let it fall away.  Now she’s an open book, and on this night, the book was reading like the best story ever.  A daughter, a mama, and a tiny little tooth tucked into a pocket waiting for magic to happen. Grins and giggles and that gasp when she realized the tooth was out.  Such perfection.

So thankful to be the one to experience this *first* with her.

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tooth-free & loving it!

 

 

 

 

how was your holiday?

“How was your holiday?!?”

People keep asking me this question.  So, here is the answer:  It was… okay.

There were good bits, there were great bits, there were funny bits.

There were tears shed, books read, cookies eaten.

There was crafting, and gifting, and a little bit of yelling at each other.

There was outside time and inside time, crazy flip-flopping weather, and the start of cedar allergy season.

There were doctor’s appointments and dentist appointments and prescriptions filled.

There was movie-night-at-home, and movie-at-the-theater, and popcorn with both.

There was joy.  There was stress.

There nights the kids stayed up late and nights we sent them to bed early.

There was grieving, and consoling, and a reminder that the holidays aren’t easy for some folks.

It was good, and crazy.  Sometimes good + crazy.  Sometimes just crazy.

It was life.

Our life.

So, if you ask, I’ll probably just say, “Okay.  It was okay.” There was so much more to it, but that about sums it up.

Happy New Year!