vascular anomalies and living in the uncomfortable unknown

Here are some words for you to think about today:

cutis marmorata telangiectatica congenita (CMTC) - hemangioma - klippel trenauney weber syndrome (KTS/KTWS) - limb discrepancy - atrophic/hypertrophic - hypoplasia - femoral vein - capillary staining - venous congestion - vascular anomaly and vascular malformation

Lots of words, y’all...

Words that are being tossed around trying to figure out why my seven month old daughter’s left leg turns purple and is quite a bit smaller than her right leg.

Words that I had NEVER heard until her cuteness came into my life.

Words that throw me into more confusion than I can deal with some days, but just enough confusion to remind me that I am not in control here.

Words that I’m repeating over and over as headings in this post so that somebody else who is hearing these words and searching Google won’t feel so alone, like I felt when experts and doctors looked at us and said, “I’ve never seen this before.”

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Speaking of that… here they are again!

cutis marmorata telangiectatica congenita (CMTC) - hemangioma - klippel trenauney weber syndrome (KTS/KTWS) - limb discrepancy - atrophic/hypertrophic - hypoplasia - femoral vein - capillary staining - venous congestion - vascular anomaly and vascular malformation

My daughter’s left leg was purple when she was born. The discoloring stretches up her back a bit and around the left side of her torso, down her leg and covers her foot. Her left leg is both skinnier and shorter than her right leg. In the NICU we were told it looks like a port wine stain. The pediatric dermatologist quickly ruled that out when he noticed it blanches when pressed against. Port wine stains are associated with Klippel Trenauney Syndrome, which is now being talked about with both our dermatologist and our orthopedist. For several months she was diagnosed with CMTC, until our second visit with the vascular anomalies clinic at Children’s Hospital in New Orleans, where she had a CT scan with contrast and an ultrasound of each leg. Her diagnosis was then changed to hypoplasia of the femoral vein in both legs, much more severe in her left leg. What I understand this to mean is the main vein running up her leg is underdeveloped and much too narrow about a third of the way down her leg, this means the blood has to reroute through superficial veins back up the leg, causing the leg to turn purple. Makes sense, right? Where it gets tricky is this diagnosis should cause her left leg to be bigger... but it’s smaller.

So there’s that……..

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Again for the google searchers:

cutis marmorata telangiectatica congenita (CMTC) - hemangioma - klippel trenauney weber syndrome (KTS/KTWS) - limb discrepancy - atrophic/hypertrophic - hypoplasia - femoral vein - capillary staining - venous congestion - vascular anomaly and vascular malformation

We have a pediatric dermatologist, orthopedist, and vascular surgeon who we are following up with regularly... they are experts - the best of the best in the state and we love and appreciate them all.

But the thing is... those words up there confuse me… a lot. They get all mangled in my head, and I get lost in them. And then Google just creeps right up on me and I just can’t deal with Google sometimes... because Google is not a doctor, but I like to think that it is and IT DESTROYS ME.

I’ve got to stop googling.

It’s not helpful.

The actual real life doctors all agree - we’re watching and waiting and following up at our scheduled appointments and if anything changes we’re making phone calls…. and thankfully she doesn’t seems to be in pain, she’s meeting all of her milestones, and nobody is terribly concerned about her growth and development in general.

And even more importantly, I’ve got to open my eyes and look at this little bundle I’ve got in front of me: Edith Joy.

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Her name means “Victorious in the battle for JOY.”

And it couldn’t be more fit for her - she is so filled with joy... and her joy fills me with joy! Her joy reminds me that Jesus formed her, named her, and filled her with smiles… and that long before she was being built inside of me, these vascular anomalies were known - they serve a purpose - they are part of her story - part of her uniqueness - they set her apart - they make her, her!

So while I’m confused by all these big words, and while sometimes sitting in that confusion feels very uncomfortable, scary, and even angering, I know that I’m confident in the purpose of her story and her journey being a good one... because the Author of her story is good. So good. Always good.

And comfortable or not, I know that I can rest in that promise.

When Moses was leading the Israelites out of Egypt and the people noticed the Egyptians pursuing them, they became scared, confused, uncomfortable, angry. They didn’t believe in God’s goodness to carry them through what was happening. They started whining and crying out at Moses and God.

And sometimes that’s where I find myself living in this uncomfortable unknown… scared, confused, angry.

Friend, whatever your personal trial, if you find yourself in that place as well, will you memorize these next verses with me? Write them on your heart and repeat them daily. Let this promise be your confidence as you walk through your own uncomfortable unknowns.

“Moses answered the people, “Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Egyptians you see today you will never see again. The Lord will fight for you; you need only to be still.”

Exodus 14:13-14

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And one more time for fun… also, can somebody tell me if this is even how this works? 😂 #keywords #googlesearch #iliterallydontknowwhatimdoing

cutis marmorata telangiectatica congenita (CMTC) - hemangioma - klippel trenauney weber syndrome (KTS/KTWS) - limb discrepancy - atrophic/hypertrophic - hypoplasia - femoral vein - capillary staining - venous congestion - vascular anomaly and vascular malformation

When you’re failing at this mom thing

Mercy made my name tag at a church event last week. I wore it proudly, but to be honest, my heart was a little heavy beneath where that tag sat on my chest. It hadn’t been my best day... or week. I lost my patience and my temper a lot. I missed opportunities to show kindness and grace, and filled them with ugliness and frustration - and I certainly wasn’t pointing them to the grace of Jesus in any of those moments. I most definitely wasn’t “super-mom” and if I’m being real, I was just barely making it to “sort-of-ok-mom” status.

I’m so proud to be my kid’s mom. It’s the best job I’ve ever had and I love it SO very much. Being their mom has grown me and challenged me and blessed me beyond belief. And I SO don’t deserve it. And I’m SO not equipped for it. I have none of the ability, intelligence, or knowledge necessary to do this job successfully. Growing up, I always thought I would be so awesome at being a mom, but I’m 6 1/2 years in and I don’t have a clue what I’m doing…

All I know is - I’m completely lost on this journey… and to be honest - that’s kinda scary to me.

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So last Saturday I was wearing that name tag and feeling those feelings… and then I read Exodus 28-36…

God is telling Moses how the tabernacle should be constructed and it is VERY DETAILED and intricate. And these people have been wondering in the wilderness, so...

I’m just thinking they must feel 20,000x what I feel - totally unequipped for the job ahead of them.

Ok, but then comes chapter 31 verse 3. After God names the guy He chose to head up the construction, He says: “...and I have filled him with the spirit of God, with ability, and intelligence, with knowledge and all craftsmanship.”

!!!!!!!!!! And this is repeated over and over in these few chapters of Exodus!

Then skip ahead to 36:5&7…

“The people bring much more than enough for doing the work that the Lord has commanded us to do.” and “for the material they had was sufficient to do all the work, and more.”

That’s. Everything.

That’s everything they needed to do every intricate detail of the enormous work God gave them to do.

Everything. Not one single need wasn’t thought of and met of by the creator of the world. He covered it all.

And if God can supply the Israelites in the wilderness with more than enough to build His house - don’t you think He can supply you and me with all that we need for the jobs He has set before us?

And to be clear, the jobs he gives us are always jobs that bring Him glory and reveal His grace to those around us.

For me, right now, it’s being “mom” to these three kiddos and pointing them to the grace of Jesus in the things I say and the way that I parent them… The job He’s given me in raising these kids is not to raise well-behaved, respectful, children who never disobey… but to raise kids who know and love Jesus with all their heart, mind, soul, and strength, who desire to honor Him because of His grace, and who have seen that modeled and lived out by their mama… and the truth is, y’all, I have no skills - none - outside of the spirit of God filling me… so in those moments of total failure, I must return to the Israelites in the wilderness and to Jesus on the cross, who supplied forgiveness in abundance for all of this brokenness and failure. I need to remember to trust the Supplier of all my needs - ability, intelligence, knowledge, and the means to succeed at this enormous job He has entrusted to this scared and unequipped mama.

And, friend, if you’re like me, you’re scared, too - you’re feeling like you’re failing, you’re intimidated, anxious, and unequipped for whatever task God has laid before you. I hope you will come back to Exodus when those feelings seek to overwhelm you. I hope you will rest in His provision and abundance. And I hope you will fall before the Supplier of your needs, giving Him your trust as you recognize His sovereignty over your life and your loved ones.

He is good, friends. He is sufficient. He is holy, sovereign. There is not one single need that hasn’t been thought of and met of by the creator of the world. He covered it all. And He chose YOU. And He LOVES you.

“And my God will supply every need of yours according to his riches in glory in Christ Jesus. To our God and Father be glory forever and ever. Amen.” Philippians 4:19-20

Rocks

My six year old walked out of her room today in a dress that belonged to someone very special to me many years ago. It fit her perfectly and it brought a smile to my face as I remembered the sweet one who once wore it.

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I wrote this blog several years ago for A Musing Maralee, and she gave me permission to repost it today as I remember our girl - Arissa.


She walked into my life when I was 21 years old. I was fresh out of college and I thought I knew it all.

I was wrong. I didn’t know very much at all, actually. She was quick to teach me that and multitudes more over the course of the three months I worked with her.

That was fifteen years ago. She was ten.

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I’d like to know who she would have become, how she would have loved the world the way she loved me in those three brief months. I believe I will know one day, when I meet her again in eternity.

Until then, I like to remember who she was and who I became because of her.

She loved. She loved so hard. And it puzzled me because she had been so hurt by so many of those she loved. But that didn’t stop her from loving anyone or anything.

She used to have these rocks. She kept them by a post outside of the school because I wouldn’t let her bring them inside. Oh, why didn’t I let her bring those rocks inside?? That question plagues me to this day.

She loved them. They weren’t smooth, there was nothing fancy or colorful about them. They were rocks. They had been walked on and run over for years. But to her they were perfect. She checked on them every time we walked past the school.

It occurred to me one day… maybe she loved them so much because they were so much like her. Maybe she knew they needed to be loved because she knew how very much she needed to be loved.

This little one… she was rough around the edges, she had truly been walked on and run over for years. She was a ten year old in a six year old’s body due to years of neglect. Anger and fear ate at her soul every moment of every day.

…until one day it didn’t anymore.

God did a mighty act in this child. He turned her life around. By the time she left this world to go to His, she slept with the light off, she ran her own bath water, she ran and played with dogs. Those may seem like small victories, but those are things that caused her to shake, cry, fight and scream in fear when we first met. She no longer lashed out in anger, but her words were filled with praise for her Father, her words were filled with love for each of us who worked and lived with her.

She was ready.

..and God did a mighty act in me.

I always knew adoption would be in my future. When I was a child, it looked like a baby boy from Ethiopia and when I was in college it looked like a second baby boy from Rwanda.

When I met her, everything changed. I recognized this calling on my life to love an older, deeply traumatized child as if she were my own.

…and when I lost her, I did what I never let her do. I brought a rock inside. It’s one of her rocks. One of the ones I should have let her keep on her windowsill.

It sits on a shelf in our home, and it reminds me of her. It reminds me of how she loved what to anyone else seemed unloveable. It reminds me of my ignorance in those days when she checked on them. I didn’t get it.

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I get it now. I have recognized a strong calling on my life and heart to love those the world sees as unloveable. The gravel in my own backyard, in group homes, institutions, juvenile detention. Not special in any way to anybody they’ve ever know, but special to their Maker. And if they are special to Him, they MUST be special to us. Our lives are not our own (1 Corinthians 6:19) and we are called to use them to love. Period. This has become more and more real to me over the last six years.

My husband and I moved to Louisiana eleven years ago and I began working at a state funded group home. The call God had placed on my heart four years earlier became reality when I was face to face with children who had nobody. NOBODY. We became foster certified one year later and began bringing these teenagers into our hearts and home. We believe that one day we will be called to do this again, and our hope is that one day this will lead to permanency and family for a child like her, who longs for love, who has so much love to share.

I attribute this change in the dynamics of my calling toward adoption to God. And I believe it is why He brought us both to the same place at the same time fifteen years ago.

How He has used the experience of knowing her, the blessing of loving her and the tragedy of losing her to mold me into the woman and mother I am today. Do not let a sadness go by in your life without recognizing it’s worth. Loving her for three quick months was worth every tear that has fallen over the last fifteen years since losing her. I am not the same and I never will be. Children have had family dinners for the first time in their lives, been hugged tightly, loved even when they messed up, celebrated Christmases outside the walls of an institution, enjoyed turkey and all the ‘fixins’ from our kitchen instead of the group home cafeteria, held hands and been prayed with, heard about Jesus, grace, forgiveness, love. . . because of the role she played in my life fifteen years ago. Her little footprints are hidden on the hearts of each one of those children, and each of their footprints have made a permanent mark on mine.

Friends, again, do not let a sadness go by in your life without recognizing its worth. Do not let a tear fall that doesn’t change who you are and how you love. Do not miss out on the opportunity to grow through your pain, to cling to your Savior, to become who He created you to be.

I love that the anniversary of her arrival into her Father’s house falls in November. Every year, toward the end of National Adoption Month, I’m deeply reminded of the role she played in my calling to adopt. I would urge you each day to consider what your role may be in the lives of orphans and foster children in your community and around the world.

“He called a little child to him, and placed the child among them. And he said: ‘Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. And whoever welcomes one such child in my name welcomes me.'”

Matthew 18:2-5

Practicing Righteousness

This is Slothy. He is my son’s baby. 

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If you know my son, you can see the irony in this sloth being his baby. 😂

My son has never done anything in slow motion! A young chimpanzee may have been a better stuffed animal for him to love. He’s my wild child, he climbs and hangs on all things, he breaks most things that he touches. He’s unbelievably curious and more impulsive than anyone you’ve ever met.

Sometimes I’m so busy chasing him and correcting him, that I forget to tell him how proud he makes me.

And our kids need to know how proud we are of them, and how blessed we are for them to be ours. They need to know that we notice them when they’re acting up as much as we notice them when they’re doing amazing things!

He dressed Slothy this morning and rocked him to sleep, y’all. How precious, right?? Some days he practices being gentle with Slothy to help himself learn to be more gentle with his baby sister, and that melts my heart. He does that on his own, and that makes me so proud. I need to do a better job making sure he knows I see him practicing good habits and gentleness.

A couple of years ago I memorized part of 1 John 2&3 with a student. Here’s a little piece of what we memorized:

“If you know that he is righteous, you may be sure that everyone who practices righteousness has been born of him. See what kind of love the Father has given to us, that we should be called children of God; and so we are.” 1 John 2:29-3:1a

Watching my kid practice gentleness this morning reminded me of this passage.

We are God’s children, y’all. How much time do we spend practicing righteousness? Practicing loving Him? Practicing actions and words and thoughts that show Him how grateful we are for His sacrifice? When we do these things our Father is glorified and pleased with the work his Spirit is accomplishing in our sanctification.

This is why I created Everyday Mercies… so that I would have a tangible tool to help me practice righteousness.

What does that look like?

Memorizing scripture, practicing it daily. Being in His Word, forming habits that honor Him and grow my understanding of Him. Being in daily prayer and praise over my family and friends. Loving and investing in others, practicing active listening when they share their hearts. Planning and practicing giving, both financially and in service.

I don’t believe in picking something up and becoming an instant all-star. I believe in practice and forming habits. The more my son practices gentleness, the more gentle he will become. And the more I practice righteousness, the more like Jesus I will become.

Christians, Jesus loves us, we know this. His Word tells us this very clearly. His Word also tells us that our faith is dead without works… (James 2:14-17) Why? Because when we live in a way that doesn’t show the world our love and gratitude for what Jesus did for us on the cross, our lives look a lot like the lives of non-Christians, and our faith looks faithless. When we’re not in the Word, regularly practicing living like Jesus, we’re not growing. That’s why it matters. That’s why when we are children of God, we practice righteousness.

What are some ways you’re practicing righteousness? How do you see your kids practicing living like Jesus?

High School, Jesus, and Everyday Mercies

Did anyone else NOT have it all together in high school?

I was painfully shy.... painfully. From my earliest memories until I went to college.

I like to blame it on my outspoken sister for talking so much that I could never get a word in…. but the truth is, I was just too scared of saying the wrong thing and having people look at me funny. As I grew, it affected more and more parts of my life, down to my spiritual development and growth. In high school I was too shy to go to youth group and WAY too shy to go to Sunday School where I might be *gasp* called on!

I was walking with Jesus at the time, but most of my peers wouldn’t have known… instead they just thought I was awkward and silent. (Which I was. Super awkward and literally silent.) In fact, I remember the question I was asked most by my peers in high school: “Why don’t you talk?” And you know what effect that had? I talked less.

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