This Thing Called HOPE: An Emma Update

It has been seven months since Emma was diagnosed with Lissencephaly, a rare brain disorder that causes severe disabilities. Seven months doesn’t seem like that long in the grand scheme of things but they have been the longest months of my life. To say that this span of time has taught me much about faith and hope would be an understatement. It is amazing to look back at where sweet Emma started and see how far God has brought her, and our family, over these months. Truly, He is so good.

After Emma was diagnosed she began having many clusters of infantile spasms every day. It was heartbreaking to watch her endure a cluster of spasms while her doctor tried different medications, combinations of medications, and dosages to relieve her. It took months to finally find the right drug, during which time Emma had also begun having true seizures. I was with her, alone, when she had three in a row and I have never felt so utterly helpless in my life. I held her and cried and tried to pray but all I could get out was a desperate cry of “Jesus” over and over and over. it was absolutely gut wrenching. But finally, finally, finally the right medication was found and Emma has been (praise the Lord!) seizure and spasm free ever since.

The change in her once she was on this new medication was tremendous and immediate. She was suddenly smiling like she never had before, gummy, wrinkle-nosed smiles that lit up her whole face. I remember holding her and crying, shortly after she was feeling better, because I was trying to feed her a bottle and she couldn’t eat because she just kept smiling at me. It was amazing. The zombie-baby she had been when her poor little brain was all scrambled with spasms and medication that made her sleepy completely disappeared and she began rolling over again and eating solids again and smiling almost all of the time. What a difference!

In the months since her last seizure/spasm, Emma has made incredible progress. She rolls over and over, finding her way around the living room and getting mad when something blocks her way. She is doing well with solids (a big concern because of low-muscle tone with LISS kids making swallowing difficult) and is working hard on her head control. She recently found her feet and the fact that she can swing her legs up, grab them with her hands, and put her toes in her mouth is nothing short of a MIRACLE. I NEVER thought she would be able to do that. She quickly learned that she could make her piano light up and make music if she banged her head on the keys and it wasn’t long before she had a line of bruises on her forehead from doing it over and over! She is doing less of that these days though because now she is USING HER HANDS TO BANG ON HER PIANO. Again, nothing short of a miracle. And the fact that she is able to understand cause and effect, ie: if I bang my hand on this it will make noise, is again, miraculous. While eating her birthday cake she managed to grab a handful of icing and tried to shove it in her mouth, but missed. Last week when I was watching her (I try to have one Emma Day each week to spend time with her and give Amy a break) she was such a wiggle worm during diaper changes and she was moving every single part of her body: shaking her head, moving her arms and hands, raising and lowering her legs, using her toes to push herself when she was on her tummy. She shouldn’t be doing all of this. Her brain should not be telling her limbs to do all of this. But she is. And just last week, during her first session of additional physical therapy, Emma stood up. This baby who has never, ever put weight on her legs STOOD.I just thank my God over and over and over in utter amazement.

Emma is blowing us all away.

And suddenly, with a whirl of new developments and progress, we are all filled with something we haven’t had since Februrary when we first heard the word Lissencephaly: HOPE. We look at Emma’s bright, smiling face, we watch her play her piano, we see her with her feet in her mouth, we find her halfway across the living room in 30 seconds, we see her STAND and suddenly, all the ways God has taken care of her and of us during these long, scary months becomes crystal clear. And we are flooded with hope for this precious baby girl. We have no idea what she will or won’t do as she grows. But the possibilites? They are so much greater than they were in February. And we are overcome with thankfulness and gratitude and praise for a God who never leaves us, who sustains us, who is still in the business of miracles, and who fills us with incredible HOPE.

*Please continue to pray for Emma. GOD IS DOING SOMETHING in her little life! Pray that the medication she is on continues to do its job and she stays spasm/seizure-free! Pray that she will continue to make great progress in physical therapy. Pray that she stays healthy so that she can work on development issues. Pray for Zach and Amy to be filled with peace and encouragement and hope. Pray that in their gratitude as well as in their worries they will cling to each other and to the God who never leaves. Thank you!!

Simply Love

One year ago today, sweet Emma Cynthia was born.

In the moments after her birth, I remember looking into her sweet face, not knowing exactly what her future would hold, and just simply loving her. My heart was in my throat at the possibility that everything was not as it should be, but in that moment, when she took her first breaths and squeaked her first cries, it didn’t matter. There was just love.

And I remember with absolute clarity the moment my brother texted me to say that the doctored had declared her perfectly healthy, that there was nothing wrong, that he should “go and enjoy your healthy baby.” I read those words, put down my phone, and sobbed in utter relief. She was fine…

How many times have I replayed that moment since February, since we found out that she wasn’t fine? How many times have I reread the blog post announcing her birth and wondered at my naivete? Too many.

Any yet, in the face of unimaginable pain and worry and fear, in the face of endless questions without answers, in the face of a story I could never have imagined being a part of there is still, simply love…

I watch her work hard to hold her head up, to make those muscles work the way they are supposed to, and I smile and coo at her and she smiles a wrinkled-nose smile, showing off a pearly grin. And there is love.

I watch Mason play peek-a-boo with her, his normally tough voice all sing-songy and she grins in response to his silliness, blowing spit bubbles in her happiness. And there is love.

I watch Addie hold her and sing to her and she almost grabs a fistfull of hair and I think to myself, “Do it! Grab that hair! Yank it hard!” just because I would give anything for her hands to work the way they are supposed to. And there is love.

I watch her with her daddy as he plays with her, touching his nose to hers over and over again and she sighs and almost laughs and cannot take her eyes off of him. And there is SO MUCH love.

As this first (very hard) year comes to a close, it is difficult to not focus on all the should-be’s and what-if’s. But it is also really difficult to wallow in that kind of pain. And so we choose to focus on the positives, the progress being made (so much!), the milestones being inched towards (she is doing remarkably well!), and that sweet, wrinkled-nose smile that comes oh, so easily now. And the love. We focus on that. We hold her and kiss her and talk sweet baby talk to her and we simply love her. For everything that she is, in the here and now, with her family. We just love her. And that love? Well, it overwhelms and overflows and reminds us how much we have to be grateful for.

Happy first birthday, sweet Emma-girl. Auntie Kristy loves you so.



It Came So Soon

Dear Morgan,

I remember a time, not so long ago, when I wrote you a letter much like this one. It was the night before your first day of kindergarten and I was awash in emotion and memories and nostalgia. You still seemed too small to be heading off to big school. You still seemed too small to be letting go of your mama.

firstdaykindySix years have passed since that very first day of school. Today you headed off to your first day of middle school and I find myself in much the same place as I did so many years ago…

Awash in emotion and memories and nostalgia…

You still seem too small to be heading off to big school.

You still seem too small to be letting go of your mama.midschool

I read through that night-before-kindergarten letter I wrote to you and am amazed that my mama heart of today echos every single word of my mama heart of yesterday…

Today is the beginning of something new; something wonderful and special and important. There is so much in store for you, so much that will happen in your life because of school. We are entering new territory and I am both excited and scared of what is to come (I’m sure you are, too.). I know school will change you. You will learn much and experience much that will help form and mold you into the person God meant for you to be when He breathed you into being. I hope and pray that you will make wise choices, that you will learn from your mistakes, and that you will come to me and Daddy when you don’t know what to do.

You have the potential, the brains, and the heart, to do amazing things. Today, a grand adventure begins. I cannot wait to see what you will do.

I love you, baby girl. My always baby.

Love, Mom


Without Borders

There’s this song that I love by Hillsong United called “Oceans.” One of the lyrics is

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me…

It’s one of those worship songs that makes you wanna lift your arms in praise, even if you’re not the type of person to do that (ME!). The first time I heard it I remember feeling near tears. This song spoke volumes to my soul and I found myself really thinking about the words…

What would it mean to ask God to lead me where my trust was without borders? Wherever He would call me? The part of me that loves my Jesus wanted to say YES! YES! I’ll follow You wherever!! But the earthly part of me? The part that worries and fears and wants to be comfortable? Well that part cringed and pulled away and said a very loud NO!

And then suddenly, only a few weeks later, He called me to an awful place. A place that was scary and confusing and gut-wrenching. I did not want to be there. In fact, I sobbed until I ached and begged Him to write a different story. Grief washed over me in waves bigger than I ever thought possible. I could sense the coming drowning and I was absolutely terrified. He called me to this place and all I could do was trust. All I had left was trust. There is nothing in me that can fix this. There is no possible way out. And my trust is growing by leaps and bounds because THAT IS ALL THERE IS. Trust without borders.

I was ushered into this place by one awful word. A word I had never known existed. The word is Lissencephaly and it’s a rare brain disorder that my sweet baby niece has. My precious Emma who I wrote about here, who we all thought was born healthy and whole after a scary in utero diagnosis, has a brain that did not develop correctly. What this means for her and for my brother and his wife we are all still learning. But suffice it to say that this is not what we wanted, not what we expected, not where we thought we would be when she was six months old and should be sitting up, babbling, learning to feed herself, and starting to crawl. Now we don’t know if she will ever do those things.

So here I am, in this new place God has called me to–the aunt of a little girl with a rare brain disorder. The first few lines of that song that spoke so much to me are

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand.

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine.

I can honestly say that this is THE DEEPEST OCEAN I have ever been in. I love that little girl so much. I am just the aunt, but my heart hurts so badly for her, for my brother and Amy. I love them all so much. And I DO NOT WANT TO BE HERE. I DON’T WANT THEM TO BE HERE.

There were a lot of whys and anger the first few days. And a lot of talks with God. I am thankful every day for the grace and mercy He met me with in those first few days, and every day since. Because I came to a place while wandering in this new, great unknown where I had to make a decision to either believe what the Bible tells me or not believe at all. I couldn’t believe in only the parts of it that line up with my life. So if I believe that God sent his Son to die for my sins (and I unquestioningly do) then I also have to believe the rest of the story. And the rest of the story says that my God is the God Who Sees, who loves, who wants good for us. He is the God who lives, who redeems, who moves, who weeps, who heals, who acts. The Bible says that God is forgiving and loving and just. That He is all-knowing, good, and merciful. He hears us, cares for us, fights for us, and works all things for our good. Even when all of my circumstances scream otherwise, HE IS all of those things and more. I have to believe it.

I do believe it.

And that belief right there? That is where I rest in His embrace…I have found Him in this terrible mystery…when I am drowning in sorrow He raises my eyes above the waves…

Trust without borders.

He never promised that this life would be easy. He never said that this life would bring us only happiness. But He did promise that He would be with us. And when you’re all alone in some Great Unknown, isn’t that enough? He IS with us.

That song has become my new life’s song. I pray that I eventually come to a place of gladness or at least thankfulness to be in this particular ocean, but I don’t know if I will ever get there. Because most of the time I’d just rather be comfortable and safe. But the last verse of that song says

Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior…

I am living that verse every single day—deeper than I ever wanted to wander but gratefully, mercifully, beautifully in the presence of my Savior. And honestly, there is no other place I’d rather be.

*If you would like to support my brother, his wife, and my niece Emma you can sign up to send them a card or letter to let them know you are thinking of them and praying for them. Click here to choose one week out of the coming year to offer your support. Thank you!

*You can hear the Hillsong United song “Oceans” here.

Desperate Housewife

When I was not quite 15 years old my family moved and I started 9th grade in a completely different school in a small town. Everyone in this school had pretty much grown up together–friends were cemented and cliques were tight. I wasn’t an awkward teenager, I wasn’t weird or snobby. I was cute, smart, and talented—a girl everyone should have wanted to know! But I was also incredibly shy. I felt completely out of place in this new school where I knew not one single person and I had a terrible time making new friends. Things were so bad in the friend department that I took to packing crackers in my purse and I would (majorly lame confession coming up) eat them in the bathroom at lunchtime to avoid sitting by myself in the cafeteria.

Yeah. It was bad.

It was undoubtedly the loneliest time in my life. Not only did I feel lonely, not only did I crave a friendly soul like a new mom craves sleep, not only did I dread waking up every single day, I also felt insignificant. I felt small.

There is a certain desperation that a situation like that brings about in person; a desperation that would cause an otherwise wonderful girl to feel like she has to shove crackers in her mouth while hidden away in a bathroom stall. And after a few months, when I DID finally make some friends, (Sirena! My savior!), I remember thinking to myself that I would never, ever have to feel that way again. And I haven’t. Until now. Until I became a housewife.

Recently, I joined my husband and two of his co-workers, a husband and wife, for dinner out with a gentleman who was interviewing for a position in their department. At one point during dinner conversation, the professor-wife turned to me and asked politely what I had been up to.

Me? Up to? What had I been up to?

I felt like a deer in headlights as I rattled through possible appropriate answers in my brain…

Laundry? Grocery shopping? I’d cleaned the kids’ bathroom…

I offered some lame answer about the new bible study I had started and conversation eventually turned to a different topic. And I just sat there. Feeling small.

I am floundering in this new season of my life as a housewife, absolutely floundering. I feel small and insignificant, and honestly, really lonely. Save those first few months in 9th grade at a new school, I have never been this isolated in my life. In fact, I have spent the last 11+ years virtually surrounded by people. At first, as a new mom at home with her baby, I felt a little lonely. But then I connected with other SAHM’s and there were playdates and trips to the park and outings at the mall. Eventually there was MOPS and lunch dates at Chick-fil-A and weekly library storytime with friends. I was almost never alone. I had a plethora of wonderful friends to choose from to spend my time with, to share in the task of raising little ones.

Now, I spend my days…pretty much alone. I do things around the house, run errands, put groceries away. For a bit of company, I turn on the TV while I eat my lunch. I still have friends—wonderful friends who I love and admire and enjoy being with. But those friends still have little ones at home and so they are doing all the things I used to do- storytime and playgroup and lunch at Chick-fil-A. SAHM’s tend to stick together with other SAHM’s and, well, I’m no longer part of that club.

My new club is a club of ONE. I mean, I don’t really need camaraderie in order to vacuum the living room. This isolation is making me feel unsure about what I’m doing and I can’t help wondering what kind of value I have in doing THIS job. It is, of course, nothing I haven’t done before. In fact, I’ve done all of this for 11+ years. But this housewife-y stuff was all wrapped up in the neat and better-looking package of SAHM. There is something very honorable, purposeful, and valuable about being a SAHM, something even most working professionals recognize. But a housewife? Where is the honor and value in that?

The thing is, my husband and I both agree that for the well-being of our family it is best that I not work. That I am here when the kids get home from school, that I be involved in their classrooms, that the laundry is done and homework is finished and a good dinner is on the table at a reasonable hour. And I can see the value in all that. But sometimes I don’t feel it. The bottom line is, I think, that when you spend your entire day alone, it is really hard to feel valuable. And it’s really easy to feel small. And lonely.

I don’t think the answer is that I need more things to do. I’m plenty busy. Between the household stuff, Tuesday bible study, and the volunteering I’m involved in with our local crisis pregnancy center, I have plenty on my plate. But something is missing. What that is, I’m not sure. Would scheduled lunch dates with friends help? Should I start a Desperate Housewives Club where we discuss the best toilet cleaner? What about a book club?

I don’t know what to do. I’m sure a lot of this is in my own head and is part of coming to terms with sending all my kiddos to school. But this new season has rocked my world. It is so very, very different and I’m not handling it well at all. I miss friends. I miss doing stuff outside of the house. I miss feeling like I have a purpose.

I am a desperate housewife.

This Boy

I love it when Mason surprises me. Most of the time, I think I have that boy all figured out, right down to how he likes his pancakes (drowning in syrup) and how he will react to a slight by his sister (with a whiny “Morgaaaaaaaaaaaaaaaaaan!”). But sometimes he does something that is completely out of his normal rough-loud-and-oblivious-to-others character and I realize I don’t have him pegged at all.

A couple of weeks ago he asked about ordering some add-on items that he needs that will enable him to (finally) play a video game he got for Christmas (do not get me started on the lunacy of this). So I asked him how much money he had in his piggy bank. And he replied, “I don’t have any money. I gave it all to Morgan so she could go see Faith* this summer.”

He had received at least $25 for Christmas and had a few more bills in his piggy bank from birthdays and tooth fairy visits so I was a bit flabbergasted.

“You gave it all to Morgan? How much was it?”

“Like $40. But I know how much she misses Faith, so I don’t care.”

I don’t think I’ve ever been more proud of him.

(*Faith is Morgan’s BFF who moved to Virginia this summer. Morgan has been saving her money to buy a plane ticket to go see her. With Mason’s help, she has a little over $200.)

But it doesn’t stop there.

One evening last week Morgan and Mason got into a scuffle. He was bugging her and wouldn’t stop so she kicked at him, supposedly aiming for his chest (why?!?!) but getting him square in the face instead, busting his lip and bending his glasses. Yeah. He kind of deserved it, but her reaction was kind of over-the-top and I don’t know how many times we’ve told her that she cannot do this kind of stuff because she is so much bigger than him and can really hurt him (see above). She was supposed to attend an OSU basketball game that evening but after causing her brother’s mouth to bleed I told her I wasn’t sure she was going to be able to go and that I was going to have to talk to her Dad about it. I was pretty sure we’d still let her go but I really wanted her to be sweating about it and to really THINK ABOUT WHAT SHE HAD DONE (This is stellar parenting here, people. I hope you’re taking notes.).

Josh finally got home from work and we went into our bedroom so I could tell him what had happened. As I followed Josh into our room, two arms suddenly wrapped around my waist and I looked down to see Mason hugging me. He turned his face up to me and I could see tears in his eyes as he begged me, “Please let Morgan go to the game. She really wants to go.”

He could very easily have enjoyed the scenario that was playing out. He could very easily have wished bad things on his sister after the pain she had caused him. He could very easily have sought vengeance in the form of “I hope she doesn’t get to go! She doesn’t deserve to go!” But he didn’t. He actually pleaded her case and cared so much that he was in tears. Unbelievable.

There are so many, many, many times that I wonder if my children will ever get along. There are many, many, many times that I wonder if they will hate each other for life, if they’ll refuse to see each other at Christmas when they are adults, if they’ll actually kill each other before they even make it to adulthood. And then these little moments happen, and I have real hope. They love each other. And this boy, the one who rarely shows empathy or compassion especially when it comes to his sisters, he’s the one who might just have the biggest heart of all.

(And just so you know, we let Morgan go to the game. And she brought home some cotton candy, which she had bought with her own money, for her brother and sister. Hope.)


As I am writing this post, it is 8:19 P.M. and Addie will officially be six in less than two hours (though we’ve been celebrating all day!).


How is that even possible?

This morning after she woke up and came into my room for birthday hugs, I held her on my lap and told her the story of the day she was born. She’s heard all the details before and loves to tell other people that she was born at home and NOT in a hospital, but she loves to hear it told again.There is so much that I don’t remember about the day she was born and yet, so much is still very clear in my mind. I wish I could recall exactly the way her sweet, chubby face looked the moment I first saw it. I wish so much that I could remember the sound of her newborn cry or the feel of her weight in my arms. But I don’t. I look at pictures and videos and some of it comes back to me, but not all…

I do remember the damp, cold air that pressed against me as Josh and I walked our neighborhood during the afternoon of my labor. We walked under an umbrella as a light mist fell and we timed contractions by the spacing of driveways (they were about every-other driveway apart).

I remember grilled cheese sandwiches for lunch and later, peanut butter toast I could not eat no matter how much my midwife wanted me to.

I remember cold shower tiles pressed against my forehead as hot water pounded on my aching back. And the two little munchkins who watched me through the frosted glass, anxious and hopeful hearts needing to be near.

I remember the smiling face of my midwife after several anxious moments telling me, “Kristy, it’s time to push. You’re going to meet your baby!” And the immediate panic and excitement that raced from my heart into my throat.

I remember my own sobs, the hum of the fan, the faint music that played as Addie was finally laid on my chest, all dark hair and chub and downy softness…my baby.

And somehow, we are here and she is six and that beautiful day was forever ago and so much between then and now is forgotten.

How I wish, so much, that I could remember it all.

Happy birthday, Baby Girl. XO