Category Archives: Sophie’s Story

The return for my prayer of thanksgiving has been a deep welling up of hope in my heart. It’s deeper than a hope that this speech disorder will someday be a distant memory and that Sophie will speak with the eloquence of a great orator. Of course my heart hopes for those things. But this hope is different. This hope is not marked by instant happiness, or even by lightness, necessarily. But it is marked by perspective, and it is marked by peace — an abiding peace which moves with me through each day, giving me the grace and compassion to be okay with our “right now.” It doesn’t remove my sadness. It doesn’t always ease the pain, but even in the midst of the pain and sadness, I feel this deep current of hope, of peace, in my soul. This hope extends beyond this world and into the next — the one we were truly created for.

I believe that one day Sophie will stand before her creator and bless his name, out loud, in perfect eloquence. I believe until that day he will hold every one of her tears and every one of mine in the palms of his nail-scarred hands. Because of what Jesus has done for you and for me, we can all have this hope that extends beyond and through and deeper than the heaviness, the pain, the sadness, the brokenness of this world.

This is my hope. All others will disappoint. If I hope for speech, I may be disappointed on this earth. But when God created Sophie, he created an eternal soul, a sweet girl who can live forever, in perfection, because of Jesus’ sacrifice. Although she is bound for a time in this life by a speech disorder, that says nothing of her eternal self. Oh to have the eyes to see this truth in all human beings around me. Thirsty souls, meant for something so much more than what’s here.

If I just focus on what is seen, the here and now of this life on earth, well, it’s a bit of a downer. But when I feel this hope, when I know with all that I am that there is another reason entirely for our creation than this earth alone, then life makes much more sense, and I have every reason to be okay with apraxia. It is a “light and momentary trouble” that  is “achieving for us an eternal glory” (2 Cor 4:17).

No matter what you are facing today, I pray you know in the deepest places in your heart that there is hope. Hope that extends beyond this earthly existence. Philippians 4:6&7 promise that when we present our requests to God, with thanksgiving, that “the peace of God, which transcends all understanding, will guard [our] hearts and [our] minds in Christ Jesus.” This hope, this peace, is the fruit of my prayer of thankfulness.

Tomorrow Sophie and I will go to Columbus for her official speech evaluation. I anticipate that she will be diagnosed with Childhood Apraxia of Speech, something I have written about before. This diagnosis, in a way, looms over me, and in another, means nothing at all. Our struggle is unchanged; my child is unchanged. But it is a reality check. We have a long road ahead. Sophie’s “speech delay” will now be a “speech disorder.” Her childhood will be different. And I am fearful.

There’s a story from the book of Mark, early in Jesus’ ministry, of a man named Jairus who was a ruler in the synagogue. His daughter was very sick, on her deathbed. This is one of those stories that I don’t think came alive to me until I became a mother. The thought of my child on her deathbed is overwhelming. (It’s not something I think that I should dwell on. But any mother knows, those fears dart in and out of our minds more often than we’d like to admit.) So Jairus comes to Jesus and asks him to come touch his daughter and heal her. Jesus is on his way to heal her when the woman subject to bleeding for 12 years crosses his path. He takes just enough time with this woman, who desperately wants to touch his robes to be healed of her ailment, that the young girl dies. One of Jairus’ servants meets them on their way and says that his daughter is dead. I can only imagine the agony that Jairus must have felt in that moment. He just wasn’t fast enough. He was her daddy, and it was his job to protect her, but he couldn’t get Jesus there fast enough. This is surely and intense moment of crisis for Jairus. His heart is must be in a thousand pieces at this moment. He is, no doubt, immobilized by fear and grief.

There is much in this world that I want to protect my children from. As Sophie faces a CAS diagnosis, I do have fears about the struggles she will endure. I fear that she won’t have any friends. I fear other children will make fun of her. I fear that her little heart will be broken. I fear that I won’t be able to connect with her, to understand and help her through these things because she can’t even tell me what she feels. I fear that the enemy will try to damage her heart through this fallen aspect of her physical being. And I feel so helpless, because I know that there’s so much I won’t be able to protect her from.

I think if we are honest, we all have fears about what the future holds. No matter what our stage in life may be, there are always fears. Our enemy always tries to immobilize our hearts by locking them up in our fears. As I was reading this story of Jairus a few days ago, I was just blown away by Jesus’ response to the news of Jairus’ daughter’s death.

He says: “Don’t be afraid; just believe.”

Every part of my fearful heart loves these words. All those fears that plague me, all the what-ifs of life, all of them still when I hear Jesus’ words to Jairus. Because I know that he would say the same thing to me even now in the midst of my circumstances. Maybe I don’t have to protect Sophie from everything. Maybe I can just believe in Jesus and place her in his loving hands. Whatever our moment of crisis is, I believe that Jesus is there, telling us not to be afraid, asking us to just believe in him.

Child can’t talk? Don’t be afraid; just believe.
Facing an illness? Don’t be afraid; just believe.
Left without a spouse? Don’t be afraid; just believe.
In financial ruin? Don’t be afraid; just believe.
Lost a loved one? Don’t be afraid; just believe.

Jesus has power beyond anything we can understand. And his scope of sight extends so much further than ours. What looks bad to me just now, I can believe that Jesus sees in the grand scheme. He has the eternal perspective that we are so quick to lose here on this earth. Because Jairus’ daughter was allowed to die, Jesus had the opportunity to raise her back to life, displaying exponentially more glory in her healing. In the same way, if our fears become reality, Jesus is there, ready to display his power and glory if we seek him. And we will see it in ways we never would have expected, ways we never would have been privileged to experience without our struggles. Even in the midst of all the uncertainty we now face in sweet Sophie’s life, I hear Jesus whisper, “Don’t be afraid; just believe.”

Camp: The place where many silly crazy things happen. This gem is me along with one of my oldest and dearest friends, Hilary. I had just defeated her in a fierce minute to win it competition.

 I spent many a summer at a wonderful church camp called Cross Training Camp. Countless memories run through my mind of my experiences there from age 9 onward. Even after Sophie was born three years ago, I still participated on a part time basis. I spent 20 years of my life involved with this camp.There is no other program that impacted my view of myself more than this program.

While I love nature, I’m not what I would consider to be a “super athletic” person, but camp challenged me to do physical things that I never thought I could possibly do. This camp ran a military theme with marching and a drill competition, and taught survival skills, canoeing, archery, and fire building. It’s not a “girly” camp. (Is there a girly camp out there??) Yet, I found myself never feeling more like the woman God created me to be than when I was participating with this program. Camp always made me feel so alive, so right. And I miss that now that it’s done.

Here is one squad going over the wall at CTC. Looks tall, doesn’t it?

I remember as a child the first year that the obstacle course was built in the woods near the church. I heard rumors of this 10 foot wall that we’d have to climb. I was terrified. I never thought I’d be able to do it. But you know what, I had some awesome counselors who got me over that wall, year after year. And then, the tables turned. It was my turn to lead young ladies over the wall. I met girl after girl who felt just like me: “I can’t do that.” And I would tell each of them the same thing: “Let’s focus this week on seeing what you can do rather than thinking about what you can’t do. If you go outside your comfort zone a little, I will help you see what you CAN do. And you just might be surprised.” And girl after girl went over that wall. They faced their fears head on with the support of their team behind them. The pride they exuded in that final night of camp, racing over the wall with their team, it always brought us all to tears. It was the picture of perseverance and overcoming.

We now have a little itty bitty climbing wall in our backyard that’s part of our swing set. This afternoon I helped Sophie scale it. So many memories of camp came rushing back as I encouraged her: “You can do it! That’s it!” all the way up the wall.

Sophie scales the wall

Bunny does everything Sophie does

This little wall is a huge challenge to her. I’m sure when she looks at it, that wall feels 10 feet tall. But she doesn’t give up, in spite of how big the wall seems in comparison to her small stature and weakened muscle tension. One hand hold at a time, she reaches the top of that wall. She’s so pleased when she gets to the top. And I’m right behind her, cheering her on.

The walls look different these days, but some days they still feel 10 feet tall and insurmountable. But I learned something over the years that I climbed and helped others climb that wall in the woods of Cross Training Camp. The walls are not insurmountable. Apraxia feels like a 50 foot wall to me. Can I even see the top? How will we ever scale this wall? From my camp days, I know the answer. We will climb the wall, one hand hold at a time, together, me behind Sophie supporting her, and a whole host of people behind me, cheering us on. Together, we will persevere.

You see, there was a rule at camp regarding this wall: If you helped your campers get over during the competition, then you had to go over the wall yourself, too. It’s a challenge that I would never forgo, despite the difficulty that it brings. And although this wall looks different, the same rule applies: I will scale this wall with my daughter, whatever it takes.

No feeling compares to those that rise upon seeing that determined face pop up over the wall, teeth gritted, dirt and sweat abounding, climbing that wall with all she has, team cheering her on. For many years, I’ve had a picture on my desk of one young lady in this exact moment, and the caption reads, “Always remember what perseverance can achieve.”

As we scale this wall that is apraxia, our teeth are gritted. We are, some days, weary and discouraged. We will experience wounds and pains along the way. Some moments will seem so scary that we can’t keep going. But we will. And one of these days, in my mind’s eye, I’ll see Sophie’s little face popping up over that wall. Because we won’t be stopped. We will persevere. We will climb this wall.

Although camp is in my past, it’s lessons remain: No obstacle is too great. Let’s not be bound up in thinking about what we can’t do. Instead, let’s just see what we CAN do with a little perseverance.

“I CAN do all things through Christ who gives me strength.”  Phil 4:13

This week in church we were challenged to leave our burdens at the foot of the cross. As we sang our worship songs and I processed this idea, I had a striking realization. Leaving a burden at the foot of the cross doesn’t mean that the issue causing the burden is going to be removed. It’s the burden, the weight, that will be lifted.

Often I think we wishfully hope that in leaving something at the cross, it will suddenly no longer be an issue. But that’s not reality, is it? What does come is freedom from that entanglement with fear and anger and anxiety and stress and confusion. Those are all ploys of the enemy to derail us from our trust in the Lord.

As we have been processing the decision to seek an apraxia diagnosis for Sophie, my heart has felt so burdened. There is a heaviness, a finality, that comes in processing a speech disability that will impact my daughter for a lifetime. It is heavy.

My heart’s cry is that Jesus would just touch her mind and she would be healed. I know he is able. But I know that in surrendering my burden at the foot of his cross, he makes no promise to remove her disability. But he does promise to carry the burden, the weight. There is freedom at the foot of the cross.

No matter how long it takes Sophie to learn to talk, I will trust in Jesus. I will let him carry the burden so that I can walk in freedom. I will not allow the enemy to manipulate me, to consume my thoughts and my life with fear and anxiety and anger.

Let’s just say it: It is what it is, folks.

Being angry and fearful and anxious changes nothing. Those are the burdens that I leave at the cross. I lay my daughter and this wicked apraxia at his feet, trusting, knowing, believing that he is so good. His plans are so good. It doesn’t look like good to me through an earthly lens, but, oh, how limited my view must be. I will trust that it is good.

After our most recent testimony at church some months ago, a fellow church member shared with me a word that God had given her as we were sharing Sophie’s story. She said, “It is well. It will be well.” And I have held onto those words. I believe them with all that I am. My Father has a good plan for Sophie’s life. I cannot process the fears and question marks of the future, and so I’m  putting it at the foot of the cross, and I’m walking away, free.

Have you ever had the realization that God set something in motion somewhere, long before you were ever there, because he saw that down the road, you’d need it to be that way? Maybe you get cold chills when this happens. Maybe, like me, you cry a little, or a lot. It’s touching to see that we have a Father who sees us and our road ahead so clearly.

I love the story of Philip and Nathanael’s calling in John 1:43-50. Jesus calls Philip first, who then goes to get his brother Nathanael, wanting him to be a part of Jesus’ ministry. Nathanael is skeptical of Jesus because he’s not from the best part of town. He asks, “Nazareth! Can anything good come from there?” His cynicism about Jesus could perhaps cause us to think that he wouldn’t be good disciple material. But Jesus sees Nathanael’s heart and says of him, “Here is a true Israelite in whom there is nothing false.” I would long to hear Jesus say those words of me, “one in whom there is nothing false.” That’s incredible. When Nathanael wonders at how Jesus could make this judgment, stating that Jesus doesn’t know him, Jesus tells him, “I saw you while you were still under the fig tree, before Philip called you.” Jesus says, “I saw you.” I love that. Before Nathanael ever entered that scene, Jesus saw him, saw his heart.

I often find myself wanting to know that Jesus sees me. And so, one of my favorite prayers to pray is “Lord, I need to know that you see me today.” He never fails to answer that prayer. Whether it was a student coming to help me grade papers, or a mentor encouraging me, or a friend giving me just what I needed, Jesus has always been faithful to show me that he sees me. I love these moments when my eyes are opened to see how God has seen me, back while I was still “under the fig tree” so to speak.

The last Sunday in May was just one such experience. Our sweet children were leading worship in church with their awesome little songs and fun motions. And it touched me like never before because I realized that God placed us in a church that already has a children’s program using sign language for their songs. We won’t have to ask the Sunday school coordinators if they could somehow work that into children’s church when Sophie moves up from the nursery. She won’t be out of place one bit when she signs her worship to the Lord. All of her little friends will worship with their hands in addition to their voices. Our church has been using motions in children’s church since its beginning several years ago, back when we were still “under the fig tree.” We didn’t even have any children when we started attending this church, yet God saw. He knew what was ahead. He prepared a place for us. This touches my mommy’s heart so deeply.

Our “Little Lifers” leading worship

I’m so thankful for our church and for a Father who cares enough to see us while we are back up the road a piece, under the fig tree. He’s always working for our good. So even though I can’t see down the road nearly as far as he can, I can just take one step at a time, trusting that he’s got the way prepared for us.

Some weeks we mosey into church, smiling and greeting others. Some weeks we tumble in, barely having our whole family clean, dressed and fed. Other weeks we go in soul thirsty, with purpose, seeking a word from the King. The latter was my heart this past Sunday.  And in his faithfulness, God spoke.

That whisper in your soul that can only be the Holy Spirit: Fix your eyes on Jesus.

As my week has unfolded, the meaning of this word has become more clear to me. I’ve been charging forward in this whole writing gig, trying to minister to others and share God’s truth with those who are reading, charging forward in writing for the youth at my church. Last week I kind of found myself looking around apprehensively for the enemy. Because usually when we’re doing something right, working for the kingdom, all he wants to do is derail us. But things have been going rather smoothly around here.

And then the trichotillomania reared it’s ugly head (no pun intended). And I was completely derailed.

Maybe that sounds shallow to you. Ok. It is just hair. But for some reason, it is utterly heartbreaking to me. I know others whose children suffer the same affliction, and they agree that it is heart wrenching to watch.

Sophie sporting her new short haircut.

If you’re getting depressed by this post, please keep reading. This is not a pity party for Catherine and Sophia. Not at all.

For the past three days now, I’ve been so far away from my metaphorical train track that I didn’t even know how to find my way back. And I’ve shed so many tears. I realize in moments like this that while some parts of me are doing very well at accepting the life that the Lord has for Sophie on this earth, there are other parts of me that are still totally angry and sad and just bummed out. Hair-pulling is a major bummer. I’m sure ten years down the road I will look back and wonder why I stressed out so much about whether or not Sophie had any hair at the moment. At least I hope so. Still, living with it is tough.

But way out here in my metaphorical field, far off from my train track, that word resonated in my soul: Fix your eyes on Jesus. It’s a choice, a resolution. I may allow myself to be sad about this, and I may allow myself to grieve (yes, for hair, and for what it represents, more importantly), and I may even allow myself to be angry. But I refuse to allow myself to be derailed any longer from the purposes and plans God has for me. Three days is long enough to sit in a fog of confusion and anger and fear and sadness in this metaphorical field of mine. It’s time to get back on the track. It’s time to press in, to move towards what God has for me. If I stay over here in this foggy field, then the enemy has won. He has effectively distracted me from what God has me doing. And I refuse to allow that to be the truth.

So I will fix my eyes on Jesus. I will dare to look past my circumstances to the one who loved me enough to lay his life down for me. And I will keep moving forward. I may shed tears along the way, but I will not allow the brokenness of this world to derail me. It will not, cannot, capture my gaze to immobilize me. My eyes are on Jesus and I’m moving towards him.

Today as I picked Sophie up from school, I watched another sweet mama try to handle her special needs boy. He was screaming and carrying on, and I, being some distance away loading my children into our car, glanced over, just on the off chance that something was amiss and intervention was needed. I saw her speaking softly but firmly to him, trying to convince him of whatever she wanted him to do, probably just to walk to the car. As his tantrum swelled, she hardened her face with determination and strength, and swept him up off his feet, trying to control his body that is getting too big for her arms. She held him like a baby and walked with purpose across the field to her car. My heart was moved watching this mama. I would never want her to think I was gawking, but I was far enough away that I let my eyes fix on them for a moment. But soon my vision was clouded with tears. Oh, my heart aches for this mama. When she drops her son off every day, he doesn’t want to stay and has a tantrum. But then when she arrives to pick him up, he doesn’t want to leave and has a tantrum. And she drags him to the car. I don’t know what her son has, but there is a clear communication barrier — he’s locked inside himself for some reason.

Another sweet little girl in Sophie’s class is also three, and she can’t walk or talk. She’s learning to use a walker, currently. I see her mommy carry her into the school each day and set her in her wagon so that she can go to her classroom. She always has a smile on her face, but I wonder what her heart must feel as she watches all the other children walk into school with their mommies.

Just this week, a friend at church was telling me about a coworker whose daughter has developmental disabilities. She spoke of how this mommy struggles, often feeling so alone. She doesn’t have a support system.

Of my six closest friends in college, 3 of us, that’s 50%, have children with special needs. What are the odds?

And there are so many other mommies who bear this load, and loads much heavier than mine, too.

My heart aches for these mommies.

It’s not pity I feel. No, just the ache that comes as we see the talons of sin and brokenness digging into our children’s lives.

I know the fear, the anguish, the rage that can overwhelm the soul of such a mommy. Because I am one of them. Being a mommy of littles is tough, even without the compounding weight of a special needs child. I am even more aware of this weight now that I have two children, one of which is developmentally typical. I don’t fear for Micah’s future. I don’t worry in the same way over how he will make friends and how his peers will treat him. Maybe that’s silly, because I can’t see the future, and his road could be rougher than his sissy’s. Regardless of the evident or hidden obstacles in our children’s lives, we are commanded not to worry. Still, there’s just not the same ache in my heart over Micah’s sweet life. My heart aches for other mommies who bear this load with me. It’s not an ache I can explain. I just know it because I feel it in my own heart for my own sweet girl with an “uncertain future.”

Us mommies with the special needs kiddos just want them to be loved and valued, treated with the dignity and respect that any other child is due. Sophie is SO blessed to be surrounded by people who do love her in this way. She has an extended family and an entire church family who adore her, pray for her, and cheer along side our family. What a precious gift. If you are part of our extended family or this church family, thank you, from the bottom of my heart, for always treating my little girl as the treasure that she is.

So I guess part of my ache for these other mommies is because I wonder, is there anyone cheering their family on? Is there anyone loving on their special little ones? When they feel that sadness creeping in as they see the differences of their child’s life, do they have a friend to cry with? Do they have the love of Jesus helping them carry this load?

Maybe this is the point of Sophie’s journey for me. I have joined the ranks of a very special group of mommies.

I applaud these mommies.

I want to remind them, “Sweet mama, you were chosen for this child. You do have what it takes. Keep going!”

There are so many days where it feels as if we don’t have what it takes, even when our children are developmentally typical. But day after day we make it happen. Because we’re mommies, and that’s what we do to provide the best for our kiddos. And it’s hard. But there’s no other option. So we trust the Lord, and we move forward, one day at a time. I can face tomorrow because my feet are firmly rooted in God’s truth. Because I know that no matter what Sophie’s life does look like, her future is secure. Her little heart belongs to Jesus. I trust in his plans for her future. And I take joy in each moment of her life.

If you are reading this and you are a mommy with a special little one, I want you to know with all my heart that it is going to be ok. Mommies, I have bled with you. I have felt your pain. But Jesus is my peace. I know that Jesus loves Sophie even more than I do. Jesus loves you and he loves your sweet little sons and daughters. He has GOOD plans. You can trust him with their little lives. He is and will be good. He has chosen you, mommy, to raise this little child, because he knows that you DO have what it takes when you put your faith in him. You CAN do this. And if you need a friend to cheer you on, you’ve got one in me.

If you know someone who needs this encouragement, please consider sharing my blog with them. My heart is for these mommies.