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…
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.
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“Mom. One day, when I have good skin all over me, I can have earrings, right?”
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?
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.
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…
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.
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.
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.
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.
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!
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.
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.
Pet (noun) A thing particularly cherished.
Peeve (noun) A source of annoyance or irritation.
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?
I say no.
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.
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.
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.
I’m grateful for the fire that refines.
“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.
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!
There are some nights when all I can do is sit outside your room and listen to the keening sounds of grief. The years of neglect show strong as you push away our attempts to console. I’m not even completely sure I understand what is going on inside your mind, but I know you are grieving hard right now, pulling from a deep well filled with years of loss.
One more try; I slip into your room and lay down beside you, your back facing me as you shake with the force of the tears falling from your eyes.
“Why you in here, Mama?”
“Because I’m sad that your sad, and I love you.”
Tears sting hot behind my eyelids as finally a crack appears and you roll yourself toward me and grab my neck tight, your head burrowed under my chin.
“It’s gonna be okay. We will get through this.”
Will her grieving ever end? Will the well of pain that over spills into the present continue to well up as painfully as it does now when weeks, months, years continue to pass? Will it look the same or shift into something different as she changes from girl to young woman? I don’t have the answers to these questions, and try as I might to make the transitions associated with the holidays smoother for her, the jumble of life this time of year has left us undone once again.
For today, for this moment, I am here for you, my girl, and in all of the moments that will follow, and I am grateful for the chance to be the one your tear-stained face turns to when everything inside of you is breaking into pieces. The inside of me is wrecked, too, sweet girl. I am destroyed by the depth of grief held inside your too-young body.
We will walk through this, and you never need wonder if I will be there when you turn to look for me. I’ll be there… I’m with you and I’m for you. Promise.
One day, when you’re much older and reading these words I’ve written, I want you to know that words are not enough to tell you how proud I am of you. You have blazed your way into our family and fought hard for what you have always known was your birthright- FAMILY. You are the strongest of fighters, and though these moments may feel like your weakest, I tell you I see you at your strongest when you are able to share your grief with me. You are so very loved, my girl. I hope you always know that and believe the truth of it.
Last year? Last year we skipped her preschool Christmas program because last year? It would have been too much. Just. Too. Much. She would not have been able to process the amount of sensory input flooding her system. She would have freaked out to be completely off of the “normal” schedule associated with a day a preschool. She would have cried to know that not every gift her eyes saw was for her.
And so, we skipped it. It was the right thing to do.
This year? My oh my. What a difference a year makes.
This girl? She stole the show. She stole the show wearing a dress her big sister wore years ago and I am just undone.
I mean, the other kids were all great, too. But this year? This year was all about the bright light blazing forth from this child.
She sang the songs. Okay, maybe not all of the right words, but still. She sang the songs… in a language she has known for less than two years.
She did the motions. She moved and grooved, all with a smile on her face.
She sat still when it was time to sit still. Her focus? It’s becoming sharper every day.
She went to the class party afterwards. She exchanged books, she ate snacks, and watched other people open gifts.
These things may not seem like a big deal to you. But they are. They are a huge deal.
Grateful for her and for the ability to see change happen right in front of my eyes.
And so, we start our Christmas break, which I’m sure will be all things merry and bright with a sprinkling of crazy added into the mix.