new adventure!

Hey there, faithful Life-Into-Likeness followers!

You are unlikely to find me in this place over the course of the year.  I’ve committed to a new project called EB 365.  The goal of the new blog is to chronicle our family’s life with EB thrown in the mix every day for a full year.

I have lots of thoughts over in the new place, some big, some small.  Check it out & follow along as 2020 progresses & life with EB rolls on.


EB 365


I’m a mess about 95% of the time.

I get angry really easily.

I truly and with a deep and abiding passion HATE the disease my daughter has to live with.

I truly and with a deep and abiding passion HATE what her disease has done to our family life.

I wish with every fiber of my being for improvement in her health.

I desire family time that doesn’t have to revolve around her care.

It would be awesome if I could find topics to write about other than adoption or EB, but everything else feels small compared to those two things in my world.

I LOVE all of my children so much it hurts.

I feel helpless most days.

I feel trapped every day.

I feel isolated from “normal”.  I know everyone has their own crazy to deal with, but I’m going to be transparent here, ours feels really really hard compared to other “crazy” that’s out there.

I feel like a brat for thinking we have it harder than others do.

I have a handful of friends and family who I know would do anything for us, and that means the world to me.

I feel compassion for those who struggle with a diagnosis without a cure in sight, and daily care to manage.

I’m tired a lot, but I wonder if it’s true fatigue or medical mama fatigue.  The two are about as different as different can be.

I never wanted a diagnosis to feel like it’s how our family defines itself.

I believe that our family is the perfect family to kick ass when it comes to fighting for our daughter and against her diagnosis.

I cuss sometimes.

I think social media makes the comparison game brutal.

I love social media for the connections it has given me to groups of people I would have never met otherwise.

I’ve unfollowed many a friend on social media, not because I don’t want to be friends, but because I can’t look at what they define as “hard” and reconcile it to the way my family and others like us live.

Transparency frightens me.

Walls make me feel safe.

Naps are my friend.

The Marco Polo app is my idea of a social life these days.

Like many mamas, I worry about the future for my children.  Unlike most mamas, my worries stem from a place that feels unexplainable to the general population.

I have questions I ask God all of the time regarding what He was thinking when He called us to all of this adoptive-medical mess.

I reallllllly don’t like messes.

I think God enjoys cleaning them up and making beautiful things from them.

I guess we’re full circle now.



*The name of this sweet girl I’m about to tell you about has been changed for sharing purposes.  I will explain more about that later. 🙂

One day, not very many days ago, my sister called me.  I answered thinking it was just another one of those times when we try to catch up with each other and fill each other in on the busy-ness of our lives.  I have four children, one of whom was adopted from China in 2015.  She has six children, two of whom were adopted through the US foster care system.  We have a lot in common as we parent our kiddos, and so we try to chat at least once a week.

This particular call was a leeeetle bit different.  She started telling me a story about how God had been opening doors for them to adopt again, and in a completely different way than she or I had adopted before.  She explained about how there was a little girl who had been adopted internationally (also from China!) and who had an adoptive family who had decided to dissolve the adoption after being home a while.

Side note:  dissolving an adoption can bring out the opinions and voices loud and clear.  I’m not going to entertain any of the negativity here.  The bottom line is that adoption starts with brokenness and some stories are brutally difficult.  Could things have been done differently?  Maybe.  But that’s in the past.  I’ve used a different name for the little girl who will be my niece to protect her, her story, and her initial adoptive family.

This little girl had been brought to my sister’s attention in the most unique set of circumstances, and she and her husband felt compelled to pray about bringing her into their home as their daughter even though they already have six children and not the largest budget.  In her words…

“We may not have much to offer in the way of material goods, but we have lots of love to share.”

So, they prayed.  Before they knew it, sweet little Abby* was staying for a week in their home to see if her special needs would be able to be handled by their family.  My sister’s worst nightmare was to say “yes” and then realize that Abby’s needs were beyond what they could meet.  Her heart was 1000% behind preventing more chaos in this little girl’s life.

It was a little crazy, that week, but they ended it knowing without a doubt that Abby was meant to be a part of their crew, and so they began the paperwork.

Abby’s situation and re-adoption is unique.  The lawyer my sister’s family is working with says it’s the most complicated situation he has seen in a while.  For obvious reasons, I’m not going to share all of the details involved, but it’s an extremely tangled case.  They are working to get this all processed as quickly as possible so that Abby can get covered by their insurance and have full access to the medical and behavioral specialists she needs.

It’s a little blurry because she is always on the move, but this girl is so SO sweet, y’all.  I cannot wait for Julianne to have a cousin also born in China! 


My sister is just about the sweetest and most generous person I know.  Her husband is quiet and soft-spoken and pastors a small country church which they love dearly.  The congregation has gone above and beyond in supporting them as they pursue this unexpected addition of a child to their family, but they still need financial help to reach their goals.

Currently they still $1,500 to be able to pay the fees to cover Abby’s adoption.  If 150 people donate $10 each, that would get them to the goal in a snap.  Or if you can do more, go for it!

They have a puzzle with little Abby’s picture on it, and for every donation made, they will write your name on the back of a puzzle piece.  They cannot do this without help, and if anyone deserves it, it’s this family, and this new daughter of theirs.

They have a PayPal account you can donate directly to.  Believe me when I say that they will use every penny donated for Abby’s adoption costs and her future medical care should the donations exceed the total needed.

If you can, please consider donating.  The PayPal link is

Please use the “friends and family” option.

THANK YOU, friends.

I’m looking forward to sharing more about this miracle story in the future!


We went on a little nature walk today.

Truth be told, I was tired of being inside and FYI – video games drive me insane.

So, on this last day of Christmas break, we cheerfully adventured I forced my cherubs into the out-of-doors.

They love me. 😉

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There were no play gyms.

No exercise equipment.

No flashy signs.

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Lest you think we are living some sort of nature-hike-loving life, let me redirect you to the truth…

There was still some complaining.

Still some whining.

Still some bickering.

And, oh yeah, some forced “act like you love each other” photo ops. I had to PROMISE not to share on the internet because that’s how much they looooove group photos.

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We hunted for poison ivy (didn’t find any, whew),

we imagined what kind of animals might be living under the torn up roots of a tree,

and we admired the age of some of the older trees we came across.

We walked carefully across wet rocks,

debated the value of following one path or another,

and spotted minnows in a holding tank underneath a windmill.


All in all, it was perfectly imperfect and I loved *almost* every moment of it.







Over one thousand days ago I sat down with a calculator, a piece of paper, a pencil and a bruised heart.

We were in the middle of the toughest days we had known to date.  Our post-adoption journey was difficult, and though I trusted that God was walking with us through the fires of trauma and secondary trauma that felt too hot to survive, my heart desperately sought after hope.

And so, I did a little math.  I’m not sure why I thought math would bring me hope because let’s be real, it’s never done that before in my life, but nonetheless, I started adding.

I added up the number of days Julianne lived in China.  The total made my heart sink.

One thousand, four hundred, twenty-six.

I knew that the Lord had sustained and protected our girl through those long months, but it was overwhelming when I thought about needing Him to walk with us for thousands of days as we adjusted to being a family of six… it seemed to be a fire that was too hot to bear.

Well, He has.

Today marks one thousand, four hundred, and twenty-SEVEN days since we stretched out our arms and welcomed our girl into our family.  She has been a part of our family for the majority of her life now, and my heart sings to know it.


On that day, a thousand-plus days ago when I thought the stress of parenting children in a post-adoption world would completely break me, God gave me a gift.  The number my calendar showed me was Christmas Eve; it was as if he was gently letting me know that he would be with me through all of the days, not just the ones that added up to December 24th, 2018.  Immanuel!  Every cry of my voice, every scream of my heart would be heard, every rebellious thought would be seen and he would never abandon me to the turmoil of my emotions.  Immanuel, through all of it.

This season, the one where we celebrate the birth of Jesus I’m more grateful for the gift of Immanuel than have ever been before.  One thousand, four hundred and twenty-seven days has brought us through many a storm and I confess that it feels like the boat we are in never quite manages to hit still waters for very long periods of time but it’s okay.

Still waters or storms, Immanuel.

During the laughter of good times or the frustration of trauma, Immanuel.

When my heart bursts with joy or when I am so overwhelmed I cannot hold back the tears, Immanuel.

God knew from the moment Jesus uttered his first infant cries that He HAD to be with us so that we could one day be with him in heaven, and this is a hope that far outlasts any hope adding numbers and seeing a date could bring me.  Today’s date has been burned into my brain as the one when everything would magically be okay, but as per the norm, the craziness of the holidays has stirred up the feelings of insecurity and fear that lurk deep in the heart of my girl’s psyche.  Trauma adds a new layer to the typical holiday madness, and while our family is gentle in understanding her and pouring extra into her during these times, we don’t always have a Hallmark kind of day, you know?  It’s hard.  We make mistakes and speak words from our flesh and she lashes out from the pain of the past and we all have to pause and breathe in a little more of the God-with-us-ness of the the season.  It’s all we really need, and I’m grateful that this landmark date in Julianne’s life occurred on Christmas Eve – a sweet reminder of the ways the Jesus has been faithful to be with us through the most trying of times.

So, rejoice, friends!  Today we celebrate Julianne being with us longer than she has been without us, but more importantly, we celebrate that God has been with us, God is with us, and that God will always be with us.


I’m going to tell you a story, and it’s a story several years in the making.  It’s the story of two women, one who had to let go of control a bit and accept some help, and one who wouldn’t stop asking how she could help.


Ever since coming home with our daughter from China three years ago I’ve felt overwhelmed.  Some days are harder than others, but the truth is (and you’ve heard me say this on repeat) being a mom to a child with medical needs like Julianne’s  is hard.  Daily wound care.  Daily checking for new damaged skin.  Daily popping blisters.  Daily wondering what the day held for her.  There is a lot about it that has improved over time.  I’m more aware of her needs and much much faster at taking care of her.  I can look at her body and know if she has any infection brewing.  I know when to contact her doctors to get a culture done and antibiotics ordered.  I know when something is “her normal” even if it is a far cry from any other kind of normal.  I’m good at being her mom when it comes to the medical stuff.  Dang good at it.  I was meant to be her mama.

The one thing I’m pretty terrible at is asking for help.  

At first, it was the need to bond with her which prevented me from asking for help from others.  And that’s pretty legit.

Then it turned into the processing of all of the pain of loss.  There’s not many people I really wanted to open up to outside of my group of fellow adoptive mamas because it all seemed too raw to share with others who may not know how to old this grief as gently as it needed to be held.

My excuses started to take on the tinge of despair.   No one outside of this little group of either EB moms or Adoption moms would ever really understand me. Why bother trying to share with others?

Eventually I reached total emotional exhaustion.  We have the day-to-day down pat, but it is mentally and emotionally exhausting to watch your child be in pain every day. My husband and I work together in tandem in a choreographed dance that is her wound care session every night.  A few weeks ago I realized that he was going to be out of town for a stretch of days for work.  My panic levels started to rise as I contemplated handling this nightly routine on my own.  Yeah, I could do it.  I had before.  But emotionally, I was drained.  I cried out to God for help knowing He hears, but feeling like my voice was the most pathetic of whispers.

He heard.

Photo by Artem Kovalev on Unsplash


In stepped my friend Angie.  I’ve gotten to know her over the past year in a class we are both in.  She has seen my tears and my anger as I’ve arrived to class after a particularly brutal bandage change.  She knows my unfiltered thoughts about so much I’ve never bothered to share with people “on the outside”.  She walked in the community of a small group of ladies with me and listened to me and listened to God whispering to her.

She asked if she could help.  My typical response is to blow people off as nicely as I can, but for whatever reason, that night I broke.  I sent her a little video of what happens during a bandage change and sent it to her.  I wanted to give her an out, you know?  I wanted her to know that it was okay if she felt like it wasn’t something she could handle or be a part of.

She watched it and said, “when can I come over”?

Since I knew Matt was going to be out of town,  we agreed on an evening when she could come and help out.  I mainly needed the emotional support of having another adult there.  EB can be a very isolating condition, and it does wonders to even have a friend on speaker phone during a tough bandage change if I’m alone.

She came over bearing gifts of dark chocolate and asked what she could help with.  She read books to Julianne while she soaked in her bath and while I cut bandages.  She helped slather coconut oil onto the bandaging materials so that the process would be faster than me doing it on my own.  She kept up a steady stream of conversation which provided a distraction for both me and Julianne.

Once the kids were in bed, she hung out and chatted for a long while and we talked about all the things.  She left past both of our bedtimes and I realized that it could have been a night when I succumbed to the anger that EB often causes to flare up in me, but I didn’t, and it didn’t.  Having someone from “the outside”, a person who does not have to be there but chose to anyways changed that night for the better.


Here’s the thing.  Chances are you are one of those “on the outside” people for someone you know.  Maybe they are going through a divorce or death of a loved one and you don’t know what that’s like.  Maybe they have a child with special needs and you can’t begin to comprehend what their life must be like.  Maybe their own health is precarious and you just don’t know the “right” words to say.  Chances are you don’t know much about what life is like on their particular “inside”.  Chances might also be that they are afraid to share too much.  People get tired of hearing about the hard stuff after all.  Nobody wants to be a burden.

In the safety of a small community I finally was able to say yes to having someone step into the nitty gritty with me and now I’m compelled to do the same for others.  We all have something we carry that needs to be shared with others and yet we are so stubborn, so prideful, so stuck in our own heads that we would rather throw up walls than risk feeling rejected by someone who has the potential to hurt us.

We have to stop this, friends.  We have to stop doing it on our own.

Can we do it all?

Maybe… for a while.  Just like I can handle the bandage change on my own.

But should we?

Nah.  It’s not what we were designed for!

We were made for community and I guarantee you this… somewhere there is a someone who is hearing a whisper, the breath of Heaven prompting them to reach out to you.  Now, will you let them?  I can tell you this:  it’s worth it. 


Angie, thank you.  Thank you for being persistent and showing me with your actions that you care.  I know you are busy during this season.  You have your own three children and husband to care for in addition to putting together a church retreat which was only single digit days away when you gave up your night to help me.  Your actions reek of sacrifice and of Jesus in you and it’s something I really needed to see.

Love you much, friend.

Saying Yes to Giving Grace

**It was a privilege to be able to share this part of our adoption journey.  Some times when I write I write to process information in my own head and heart.  This time, the processing has been completed, and completed a while ago.  This writing is different – it comes from a place of wanting others to know that IF they feel the same way I felt, you are not alone, and furthermore, there is still room for grace. **

I knew when we stepped into life as a family who had experienced the gift of adoption relationships with other people would be different. I knew that some people understood the “why” behind our choice and some people didn’t. I knew that some people would understand the difficulties associated with living life with our child from hard places and that some wouldn’t.

What I didn’t know was that some of the deepest post-adoption hurt would come from the one place I thought would be the safest for me to be… my church.

Now, understand that when I say “church” I’m not talking about the Church–with-a–big–C. Church is the body of Christ all over the place. Church is in Texas and Mexico and Africa. Church-with-a-big-C is why we said “yes” to adoption; it’s being a part of God’s family, walking in obedience to His call, and allowing the Holy Spirit to move through you for the glory of God’s kingdom.

No, what I’m talking about is church with a little c. I’m talking about your local congregation where you worship on Sunday and maybe other times during the week as well. I’m talking about the people you live life with; the people you’re in community with. These people are like family, and as such, when there are hurts, the hurts tend to run deeper and impact us more strongly.

We came home with our daughter and quickly realized that the way our church-with-a-little-c did things in a way that presented some challenges for our family. We didn’t think much of this challenge during our cocooning time because honestly, all that was on our mind was letting this girl know we were trustworthy and safe. It was a full-time job.

The time finally arrived when we felt like we could ease back into a new type of normal, and that’s when we had to acknowledge the fact that our new normal was going to have to look different from our old normal. We could still be active in our church on a typical Sunday morning thanks to the effort that our Children’s Ministry has put into understanding and helping special needs families, but we couldn’t participate in the small group setting in the way we had before due to the dynamics our church encouraged for small groups.

We knew we needed to make changes to be a part of a small group, but they were changes that our church wasn’t able to address in a manner as quickly as we were hoping for. We felt frustrated, but knowing that life in smaller community is beneficial to our walk with Jesus, we didn’t give up trying to make it work.

Eventually, we connected with another family who was experiencing the same types of struggles in their own post-adoption world. We started to meet together in a much smaller setting, and after a while, presented our “mini-small-group” to some folks in our church leadership hoping that they would be on board with our desire to honor the leadership of our church, our desire to meet in community with others, but also our need to provide a safe environment for our children. Our group wasn’t typical, but we were excited about it and hoping others would be, too.

Some of the people we talked to were fully supportive, and some were not.

And, it hurtA ton.

I’m not even going to lie here. It took a long time for me to deal with this. Every fiber of me screamed for understanding. I needed to be understood.
I needed our family to be understood.
I needed our daughter to be understood.
I needed for others in the church-with-a-little-c to see that even though it looked different, we were indeed living life in the Church-with-a-big-C in the way that we felt that God was calling us to.

Adoption had changed our family, and it had also changed our particular family could function in social settings. We wanted to be understood and in the middle of all of that hurt we felt completely misunderstood.

The story could end there. It could end with anger or bitterness or sadness simmering in my heart. But it doesn’t.

It’s no surprise to me that after weeks of fighting with the words to communicate the depth of feeling I have regarding this topic that the words would suddenly start to spring out of my heart in these days surrounding Easter. Grace, grace. God’s grace. Grace that covers us and our multitude of sins. Grace that chose to hang on the Cross even knowing what darkness my heart could hold on to. Grace that calls me, woos me, won’t let go of me. Grace that won’t let me simmer in the hurt which had morphed into resentment.

Anger and resentment have no place in a heart claiming Christ as Lord and so it has no place in mine. Jesus knows all about those people who caused us to feel misunderstood, and He loves them. He knows all about the hurt in our hearts and He loves us.

He loves. Period.

I found myself guilty of believing that other people’s empathy toward us was a prerequisite for their significance but it’s not. I was wrong and the recognition of my own wrong-ness has given room for forgiveness.

Truth be told, this is hard to share. The only reason I dare is because I know that there are others who probably have felt just as hurt by their local church-with-a-small-c.

Maybe the child with special needs you welcomed into your family hasn’t been welcomed into your church.
Maybe your child looks “normal” on the outside but struggles with the hurts which abuse and neglect have caused on the inside and your church doesn’t understand.

Friend, know that your church-with-a-small-c isn’t always going to get it right. They are people. Humans.

Just. Like. Us.

They will make mistakes. They may not be compelled to fight for our children in the way that we are and that’s okay.

Your church needs you. They need your child. They need your family. They need to see that adoption doesn’t look the same from family to family. They need to see you not give up both doing what’s right for your child and walking in obedience to God. They need to feel the grace they may not even know they need. You may be the only family they know who has obeyed to the call to adopt and they need to see this love lived out.

And you? You need your church! You need the community offered by others walking with Jesus. Don’t give up on your local church-with-a-small-c. Don’t fall prey to the lie that you can walk your faith on your own. They need you. You need them.

It’s possible that this will be tough, believe me, I know it possible. The saying yes to hard things doesn’t end once you’re home with your new child. There will constantly be new chances to follow Jesus in laying down your life for the sake of others. If that looks like showing grace when others in your church seem to not understand you, then so be it.

It’s a “yes” worth saying.

You will find yourself leaking out the icky stuff like anger while the good stuff like love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control fill you up to overflowing.

You’re okay with saying “yes” to hard things, and God will give you the grace to say “yes” to this, too.

**Originally shared at No Hands But Ours **

About this time last year, I was in discussions with the principal at the school my children attend.  The discussion revolved around the potential need to add another 2nd grade class during the 2017-2018 school year, and would I be interested in thinking about a full-time job?

Honestly, the thought of working full-time hadn’t crossed my mind, but I said I’d pray about it.

While in the waiting to find out whether or not  the added class would be a go or not, I felt strongly that God was calling me to take a faith-step and apply for the Discipleship School our church offers from Sept. – June.  The tagline, “what if one year could change everything” intrigued me as I knew that there was so much MORE available to me when it came to knowing God, being in relationship with Jesus, and walking in the Spirit.  And so, I applied.

Shortly after being accepted into the 2017-2018 discipleship class, I received a phone call welcoming me to the staff of my children’s school.   I felt total peace about this.  I KNEW it was where I was supposed to be.  The thought of full time work, plus taking a class of my own, plus the ins and outs of life with a family of six could have scared the pants off of me.

But it didn’t.

I went into this year knowing it would be tough.  I didn’t know exactly how tough it would be, and I’m thankful for that.  Working is great; I love what I do and enjoy the environment I get to work in.  Discipleship School is amazing;  even though I have to chug extra coffee on Tuesdays and Wednesdays to stay awake during and after long classes it’s worth every drop and every sleepy-eyed wake-up call to the alarm clock. Life at home has been different, but it’s allowed me to see to an even greater degree which things are important to me and which things just aren’t.  FYI:  clean floors?  Those fall under the “not really that important” category these days.  It’s also allowed me to invite my children into taking more responsibility for the home we live in, as well as giving me the chance to appreciate even more my dish-washing/laundry-folding/breakfast-making/super-hot husband.

I had hoped to write sporadically in this little space of mine during the year, but found that time was seriously lacking at the start of the year and all of the transitions being made.  As the fall started to ease into chillier days, Julianne’s issues regarding her Epidermolysis bullosa diagnosis started flaring in a way we’ve never seen before.  Antibiotic after antibiotic.  Pain beyond what any child should have to endure.  By the end of each day I was just zonked — completely drained both physically and emotionally.  Though processing it all through writing seemed like a great idea, reaching through the fog of my fatigue to find adequate words was basically impossible.

As a result of the intensity of the school of life I’ve been in, this place has been silent.  Bare, even.


Photo by sergee bee on Unsplash

Today I looked out of my window and saw the bright green of the oak tree right outside of my window and despite the agony of having yet another brutal bandage change behind us for the day, it made me stop and think.  As I stared, gratitude flooded my heart.

These past months?  They’ve taught me about a zillion life lessons.

I’m less likely to stress over things that just don’t matter.

I’m more likely to recognize the things that really do matter.

I’m more okay with who I am than ever before.

These months have grown me and changed me (Y’all, I even said yes to getting a cat for my oldest! Me, the dedicated anti-cat person!) and I am deeply thankful for every single tear-stained brutally exhausted moment.

When I started this new season of life, I fully intended and believed it was to be a years-long season, but you know what?  The once stable looking horizon up and shifted on me!  Next year I will be staying home with one of my children to spend a year doing homeschool.  My little curly-headed nugget has had a rough time the past three years  as we have adjusted to our family growing and is in need of some serious one-on-one time.  It’s tough being the baby of the family and losing that status.  While he has handled it all better than I think I would have at his age, it’s his turn to know that we’re making a decision based solely on what HE needs, not what’s best for little sister.  Being the sibling to a child with a chronic medical condition can cause some legit secondary trauma in the lives of those others living in the home.  I am grateful we have the ability to give this time to him, and my prayer is that we not only have a blast learning but that we also get to dig out some of the hurt that is buried in his heart and run after healing for that hurt.

Here’s to new horizons,

a God who constantly keeps me on my toes,

and more life lessons to be learned.

Maybe, just maybe, I’ll have time to take all that has been crammed into my heart and head this year and apply it.  Can’t wait to see what happens next!


Epidermolysis Bullosa (EB) is a group of inherited skin disorders. The last week of October every year is EB Awareness Week.  Since it is known as “The Worst Disease You Never Heard Of”, we choose to share bits and pieces of our life with our butterfly, Julianne.  She is a gift to us from God, and the things that have changed about us since she came home is from China in 2015 are too many to list.


“Mom, sometimes kids ask me what’s on my arms, and I don’t really like it.”

“Well, what do you tell them?”

“Nothing.  I just say nothing.”

Her reality means that she’s going to be asked these questions for a lifetime.  I know I won’t always be there to fend off the curious stares, or to shield her with my body when she feels uncomfortable.  And so these conversations happen.

“Why don’t you just tell them that you have EB?  You can tell them that this is the way your skin is, but that you love to play, and maybe you could play together?”

She sighs, and tears start forming in her eyes.

“I just wish I had regular skin, Mom.  I wish I didn’t have EB.”


I can tell she doesn’t always believe me when I tell her how beautiful she is.  I know that she sees the glances and hears the whispers.  She’s finally recognizing that people stare at us not only because she is Chinese and I am not, but because she looks different in a way that transcends ethnicity.

She runs her fingers up and down my arm and whispers that she wishes her skin was like mine and my heart breaks.

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If I could choose for her, I’d choose skin where her scars have faded and her wounds are closed.

I’d choose a life where she could enjoy the South Texas classic appetizer of chips and queso, something she cannot do now because the sharp edges of the chips cut and wound her mouth and throat.

I’d choose nights of restful sleep where she isn’t plagued by the persistent and frustrating itchiness associated with EB.

I’d choose a vocabulary for her that doesn’t include words like “needles” and “barium swallow study”.

I’d choose outings with family where the double-takes don’t happen, where the gazes don’t follow her.

I’d choose a bath time experience that isn’t overcome by anxiety knowing that the pain of the open wounds will be more than she can handle.

I’d choose the sparkliest, pinkest, most girly-girl shoes without wondering if they will rub blisters on her tender feet.

I’d choose for her to run without fearing the fall.

I’d choose for her to be comfortable in her own skin.

I’d choose joy for her… but then I realize… she already has that.

She has the fragile skin, and joy.

She has the wounds, and joy.

She has the different food choices, and joy.

She has the crazy intense itchiness, and joy.

She has the medical vocabulary she shouldn’t have, and joy.

She has the anxiety associated with pain, and joy.

She runs without fearing the fall, she dances without fearing the consequences.

EB Awareness Week

Yeah, EB basically sucks.  No other way to put it.  In fact, saying it sucks is being kind.  Language typically used to describe this thing can run toward the salty side on a bad day, ya know?

The daily wound care, the pain, the stares.

The dedication of a closet to medical supplies, the doctor visits, the whispers.

The limitations placed on her, the anxiety, the knowledge that this skin she is in is different from the norm; it’s enough to make a sane person a little crazy, yes?

But even with all of that (and more)… she is joyful.

She knows that little things are big things in her world, and every little thing brings her joy.

I see her pain and it used to make me roll my eyes a bit when I hear others talking about their own experiences, experiences I might have classified as “lesser” in my mind.  But then I see her reaction, and it’s straight up compassion. She knows what it’s like to hurt, and she hates seeing other people hurt.

I can learn a lot from her.  I have learned a lot.

You are a rare one, my girl and you are making me rare, too.


For more information about EB, check out

There are many different ways to help.  DEBRA sends supply boxes to families with newly diagnosed babies, they also send supplies to families who may not have insurance to cover the cost.

Another great resource is EB Research Partnership, which is dedicated to helping to find a cure for this devastating condition.

Sometimes you wake up to see the sun rise and are met with darkness, clouds, a downpour of rain off in the distance. 


Sure, it’s not what I rubbed sleep out of my eyes to see, but the downpour left me wanting a drenching of my own- a Holy Spirit sort of reminder of who I am, who my Father says I am. And so, I listened while the wind blew and the waves crashed. 

My expectation was to be dazzled by color, drawn to praise. 

Instead, I was quieted by the storm, drawn to repentance. 

Unexpected. Good. 

Twenty-four hours later, my eyes appreciated the beauty of the sun rise in a new way, in a deeper way. My soul could process the beauty differently because of the clouds.