Category Archives: Sophie’s Story

These shoes. Tiniest little white Nikes you’ve ever seen. In this picture, my youngest daughter Hannah is wearing them, standing next to big sister Sophie in her barefeet. We’ve just been traipsing around the yard. But once upon a time, they were Sophie’s shoes.

Sometimes I unpack a box full of Sophie’s things for Hannah and just savor the fond memories of Sophie’s younger days. Her cute little diapered butt crawling around in that ruffled skirt. A fancy church dress with all the frills. The t-shirt she wore in this picture or that. Other times, I pull out an item like these shoes, and I’m transported back to a very different time in my life.

Why would anyone buy lace up shoes for a baby? You might wonder. And they look to be hardly worn! Being Nikes, we all know they weren’t cheap. Was this just a first baby thing where you splurge on a super cute tiny version of something? No. These were Sophie’s therapy shoes. They had to be lacers because she had custom made braces for her ankles. Her little ankles were hyper-mobile, too flexible for her to stand up when she should have been able to. Because of her hypotonia, Sophie started physical therapy at about five months old. These tiny shoes take me right back to those home therapy visits. And boy do they make me realize exactly how far we’ve come. It’s hard to see that in the day to do. I forget the challenges that Sophie has already overcome, her grit, her determination, her pride in finally being able to do something that was difficult for her. Sometimes it’s all too easy to focus  on the every day struggles of autism. It’s much more difficult to keep in mind what an overcomer my Sophie is.

Laundry basket therapy, where Sophie first learned to pull up to her knees in her tiny red spandex hip supporters.

This week she started kindergarten. It felt a little anti-climactic to me because it’s like the fourth year I’ve taken her to her first day of school. But these tiny shoes made me realize exactly how huge this moment is for us. The fact of the matter is that any number of very serious conditions were on the table in Sophie’s first year of life, when she wore these tiny shoes. But exactly NONE of those conditions were ever found to be her diagnosis. Autism. Yes, it is still very hard. But it is so important for me to remember what it is NOT for Sophie, based on those early days of her journey.

A kind lady in my church, a follower of Sophie’s story, recently asked me, “Does it ever get easier to accept?” speaking of our autism diagnosis.

In all frankness, I told her, “No.” But today I would add to that “not yet.” Because today I have the perspective of the past.

And, not the least bit coincidentally, the same day she asked me this, my pastor taught on “Anticipating Heaven” and having a “God’s Eye View” of the troubles of this life. Yes, autism is very hard to accept, but someday, this diagnosis will be a memory, just like her physical therapy days. And someday, when all things are set right, my sweet girl will be free of this neurological disorder forever. She, like the rest of us, was created for far more than this broken world allows. We live with autism in this life, but we anticipate a life of wholeness, for all of us, in what is to come. And in this there is hope.

The end of the school year always brings cause for reflection for me. This year I feel especially reflective because Sophie’s preschool chapter is coming to a close. I’m not just reflecting on this past year, but on three years in this great program.

Sophie was privileged this year to be with the same teacher whom she had her first year in preschool when she was three and still non-verbal. It is always an eye-opener for me when people who haven’t interacted with Sophie for a long time get to interact with her again. They are blown out of the water by the amount that she has changed and the progress she has made. This was especially important for me this year as we received her educational identification of autism. Mrs. Bausum has been constant in reminding me of how much Sophie has grown. And she reminds me that this is an indicator of how far she will continue to grow.

Besides being a wonderful support for me, Mrs. Bausum has been a phenomenal teacher for Sophie. She LOVES her preschoolers like her own children. She supports them and challenges them. She is endlessly patient and kind, even in the midst of meltdowns and challenging behaviors. She’s one of those teachers who you know has forever changed your lives. We are so grateful to her for all she has done for us. She also had a fabulous team who helped her and loved Sophie well: Miss Mills, Mrs. Westfall, and Miss Changet, along with occasionally Mr. Herzog. And then there’s the whole team of therapists: Mrs. Meyers, Mrs. McClain, Mrs. Hutcheson, and Mr. Dorian. These fabulous people have enriched Sophie’s life and the life of our family by extension. They are skilled and caring.

And what I love the most about all these people is that they’ve never looked at Sophie through the lens of a label. In the few short weeks that we’ve had our label, I’ve already realized the difficulty this brings. Sophie’s new team at her new elementary school sees autism on her reports and immediately expects certain things and sees her in a certain light. While the educator in me understands this to a degree, the parent in me just screams that they would look past that label and see my child. Sophie’s diagnosis was not an obvious one for anyone. No one really saw it except me. Autism can look really different in girls, especially when they are talkative like Sophie. No one on her team even considered it for her, even when I asked about it last fall, because she just doesn’t fit the typical mold. But after evaluation upon evaluation, the results are clear, and so we have the label. My prayer is that as Sophie’s new team begins to work with her, they will be able to look past the label and not just expect Sophie to be a certain way because of her label. I pray that she will receive both the support and the challenge that she needs to continue growing and achieving.

Many people have asked me what’s next for Sophie. The short answer is: KINDERGARTEN! Sophie is SO EXCITED for kindergarten. We toured her new school just before school concluded in May. She bounced around from room to room with the assistant principal and me, looking at the art room, the music room, the kindergarten rooms, the lunch room, and several therapy rooms. She was full of questions and excitement! She will be going to her home elementary school, which is just a block and a half from our home.

On the medical front, Sophie has just seen her developmental pediatrician. Given everything that the school did to evaluate her, he was comfortable offering us the medical diagnosis of Autism. He was also quick to point out that her diagnosis was not an obvious one, but that it is good she has this in place entering kindergarten, because it will open more doors for support for Sophie. It also finally gives us an answer for what has been causing every single one of the problems she’s had, from anxiety and sensory issues, to her muscle tone and speech delay.

In this moment, as I edit this text I wrote two weeks ago, I’m honestly pretty angry about life. I know in my head that I’m crazy blessed in so many ways. There are many folks out there who have it way worse. But I just need to say that I’m not happy my child is diagnosed with autism. I’m not happy that I lost a good friend and key support person in my life immediately after saying “yes” to God’s call into ministry. (If you’re not a consistent reader of the blog, my neighbor and friend passed away in April, my kids’ “granny.”) I’m pretty angry about all of that. Life since March has basically been overwhelming. And when I wrote this two weeks ago, I was in a little bit better place than I am now. So, I’m reading these last few paragraphs I wrote below and trying to take them to heart today, in the middle of the anger, the grief, the sadness. I think it’s ok to be angry that this world is broken. I think it’s ok to be mad that death happens. To rage, “this isn’t how it’s supposed to be.” Because, in all honesty, this ISN’T the way it was supposed to be. Our world is marred with brokenness. And the pain that I’m feeling was never a part of God’s plan. But he is there in the pain. And he can handle the anger. It’s not a place to remain, but sometimes it is a season in the journey. And I know that a little rage won’t scare him off. Just like when my kids rage at me about something that’s rocked their little worlds. I can handle it. I’m big enough. But right now, I’m the kid, and my world is rocked, but I know my Father can handle it.

So… I’m coming back to where I was two weeks ago… and I’m going to try to listen to myself. I’m honestly not there today, but I’m trying to turn that arrow….

My word for the year has been “Do what’s in front of you” with the image of an arrow directing my path. So in spite of all the upheaval in my personal life, I’m trying to keep myself pointed in the right direction, and I’m going to keep doing what’s in front of me.

Life has been hard this spring, and often overwhelming. But when I feel overwhelmed by any one of many emotions in many difficult situations, I have to remind myself that I can make it through today, I can be ok with today. And that’s got to be enough. God’s grace for tomorrow will meet me in tomorrow.

“Let your eyes look straight ahead; fix your gaze directly before you. Give careful thought to the paths for your feet and be steadfast in all your ways. Do not turn to the right or to the left; keep your foot from evil.” Proverbs 4:25-27

Have you ever had one of those moments where you are saying something to your child and you immediately hear the voice of God speaking it back to you? I had one of those moments this morning. We were running late getting ready for school, surprise, surprise. I hadn’t slept much the night before. The baby was cranky, being the reason that I was up, she was also sleep deprived. I was trying to do too many things in too little time. As I hurried to get ready to avoid driving Sophie to school in my bathrobe, I shouted instructions to the big kids, hoping against hope they could get themselves together better than usual when left to their own means. I asked Sophie to get her pink blanket for rest time at preschool, to get her socks on, and to get her shoes on. Three simple requests.

She came back to my room a few minutes later where I was trying to dress myself while keeping the baby out of my trashcan, and she proclaimed with glee, “Look, I got my hat!” She’s wearing her winter hat. Sockless. Shoeless. Blanketless. But she’s got her hat. And she was so happy about it. In my overwhelmed moment of frustration I told her she didn’t need a hat today because it’s 50 degrees outside. (Can I get an amen for that?!) I reminded her about her socks and shoes and blanket. But instead of getting on the ball, she came back to that hat and argued with me that she did indeed need her hat today, that she planned to wear it outside to school. I should have just dropped it. She’s six. Her logical function is, well, six. Sure, wear your hat. It’s a hat, who cares! But I was a little annoyed with her attitude to argue with me, and so I chose the wrong battle. But in that battle, what I said to her really resonated with my own journey lately.

“You have spent all this time worrying about a hat that you don’t even need when you have not even done the things I’ve asked you to do. What I’m asking you to do will prepare you for school, where you need to be today.”

That hit me between the eyes, man. I have spent so much time worrying about things I don’t even need instead of just doing what God has asked me to do. When I spoke those words, I heard “house” rather than “hat” in my head. You have spent so much time worrying about a house you don’t even need instead of doing the things I’ve asked you to do. I’m going to chew on that one today. Mine’s a house. What hat are you worrying about?

My faithful Sophie’s Story Readers,

I’m so sorry for the long silence! I’m sure you have wondered where I have been these past six months with Sophie’s Story. My silence has, in large part, been due to the birth of my daughter Hannah. New babies do require a great deal of time! And they are really good at not letting mommies sleep very much. So what used to be mommy’s free time turns into mommy’s nap time.

But in addition, I felt an undeniable check in my spirit last fall when I was sharing about Sophie’s upcoming appointments with the developmental pediatrician. A dear friend of mine once wisely shared with me how she had at times over-explained, and over-shared her own life, in an attempt to justify herself, so that she would not be judged, to the point that she felt stripped down, bared to the world, with nothing left of herself that was private. She reminded me that I don’t owe anyone any explanations for my decisions as a parent. I valued these words, probably more than she knew. I felt I needed to take some time to ponder and treasure Sophie’s moments in my heart and to really search out my motives in sharing Sophie’s Story, because perhaps they had strayed from where they began.

Sophie’s Story began as a way for me to share the beautiful things that my Father was doing in my life and in Sophie’s through her journey, full of challenges and triumphs. But in doing that, I wanted to consider carefully if I was now over-sharing Sophie to the point that she would someday feel stripped bare for the world to see. She is young yet, and she cannot read, but someday she will be able to read, and she will probably read what I have written about her life (hopefully it will be a book!). I would never want Sophie to feel like we were only focused on what could possibly be “wrong” with her. There is so much right about her life!

As I shared Sophie’s Story with a new friend over coffee recently, tears filling my eyes, I remembered the heart of why her story began. It began because I wanted the world to see that even in the very hard things in life, which Sophie will someday have to embrace about herself, Jesus is there to be trusted. Through every doctors appointment, though every goose chase of a medical test, through all the heart-wrenching moments and the ones where my heart just soared, Jesus has been there.

As I tried to explain to my friend in a nutshell about Sophie’s Story, I was reminded of the words my brother shared with me quite a few years ago now. When we first began a search for any over-arching diagnosis that would explain Sophie’s muscle tone, and we kept coming up empty handed, he said, “Maybe it’s because God already healed her.” When Sophie was four months old and was diagnosed with low muscle tone, we brought her to church and our church prayed over her. Many have continued to pray over the years.  And I truly believe that in those moments, everything changed. Yes, Sophie has still suffered delays because of her muscle tone, and that may forever impact her body. But we’ve never found a cause — from brain tumors to genetic conditions to syndromes, nothing has ever been found. It was important to search these things out because they could be indicators for more serious problems that she might have had that were invisible to the eye, but God, in his mercy, has blessed Sophie with health and wholeness in every area we’ve searched. And so we’re pretty much done searching.

Sophie has her issues, yes, but so does every child. I’m tired of scrutinizing every little flag that pops up because maybe it will point us to a new idea. Done. I’m tired of chasing down theories. Done. I’m tired of over-analyzing her behaviors. Done. Sophie is doing really well in all areas, and we are rejoicing that she is where she is on the cusp of her sixth birthday. When her low muscle tone was discovered at four months old, we really didn’t know what six years old would look like, but here we are, in perfect health. Thank you, Jesus.

There’s a lot of freedom for me in this decision to cease searching and analyzing, and just enjoy parenting. Sophie feels less like a puzzle to solve and more like a kid to enjoy. I’m letting go of the search, and I’m just going to sit back and enjoy the ride. I’m going to treasure her kid years in my heart, soaking in the days of make-believe with the doll house, the puppies in my pocket, the barbies, the Paw Patrols, the baby dolls. She’s a great kid, and I’m forever thankful for her journey and all its challenges because it has taken my faith to new depths and strengthened my walk with Jesus. But I’m done looking for what’s wrong, and I’m just going to soak up all that is so very right about Sophie.

In my last post I came to you with much enthusiasm over Sophie’s growth in handwriting. She’s doing so well with her letters! It’s thrilling. This week I can’t say I have a heap of enthusiasm, but I do have a heap of cuteness.

Sophie got glasses.

We knew that this was likely for Sophie from the time she was about 9 months old, when she was diagnosed with nystagmus. This is an involuntary darting or shaking of the eyes. And it is caused by, you guessed it, improper muscle coordination from the brain. It’s the million dollar answer for the myriad of Sophie’s issues. Of course her brain has adapted to the way her eyes move, so she doesn’t see things constantly shaking, but nystagmus does impact her vision somewhat.

For one thing, her ophthalmologist tells us that she will never have great depth perception. (Perhaps an explanation for her abundance of graceful movement lol — she falls all. the. time.) And now her eyes are not really working that well in unison because one eye is nearsighted, and one eye is farsighted. So one of her eyes can probably see better than the other, and the brain will learn to depend too much on the good eye, allowing the bad eye to lag even more. So, to try and get her eyes working together as much as possible, she has to wear the cutest glasses ever.

Sophie is super awesome at losing things, so I’m expecting that the search for the glasses will be everlasting and epic. Fortunately, she’s not terribly destructive of her possessions, though her abounding grace aforementioned does sometimes result in the destruction of her property. So having glasses is bound to be lots of fun. But at least she’s cute, and she can see.

So far she does not really enjoy wearing the glasses, but she does ok if she forgets that they are on her face. I know in time she will get used to wearing them.

One of the deciding factors for us in keeping Sophie in preschool for another year was her fine motor skills, specifically her handwriting. Her educators were faithful to reassure me that handwriting emerges at all different ages, like many other skills. But it was definitely a skill I felt she should have some emergence of before entering Kindergarten. And she did not. Until this summer, she really couldn’t even draw a circle. She was mainly still just scribbling. This is a delay that we expected for Sophie because of her low muscle tone. Her hands have been an area of low tone and delayed development in other skills as well. In addition, writing requires heaps of motor planning, which is also difficult for Sophie. Handwriting was included in Sophie’s IEP goals last year, and she worked all year on writing, but the scribbles continued! I was discouraged by her limited progress with this goal.

As with all things, Sophie has once again shown that she is on her own timetable and will do things when she is interested and ready. Once school started this fall, she became very interested in writing, but she was still not able to do it. The magna doodle became her best friend. She scribbled and scribbled trying to figure out how to form letters with that pen.

We even have a mini magna doodle for travel! Practicing with Daddy here.

As her OT rolled out at school, her therapist suggested that we use some other modes for learning the motor planning piece of writing, such as using a tray of rice for her to form very large letters in with her fingers so that her brain could learn the movements. We jumped right on that and made a huge mess in my dining room. And she also did similar activities in her classroom and during therapy.

Practicing letters in sand at school.

So school has been in session now for about six weeks. And this week Sophie surprised my socks off one afternoon. We’re all playing on the floor, and I hear her talking to herself (she does this frequently and her conversations with herself are a stitch!) while she’s playing on her magna doodle. She’s saying this is a “P” and this is a “D.” I look over and, low and behold, there are real letters on her magna doodle!

I praised her excellent work, and she invited me to come and write with her. She wanted to show me all her skills. Just like that, in a day, she can write many letters — D, P, b, H, h, I, i, O, M, E, e, etc — when six weeks ago she could only draw a circle! The switch flipped! Amazing! I’m so proud of her! She can write all of the letters in her name except for the S. S is tricky! So I help her with the S, and she’s practicing by tracing the one we do together over and over again. But the rest she can do all on her own.

SO proud of her work!

She’s also drawing faces now, which is great. The faces crack me up!

And there’s one picture she does often that Micah calls “the bathtub with legs on it.” I’m not sure yet what it is. Maybe a bathtub with legs on it.

I’m thrilled to see Sophie making such great progress already in school this year. This totally reaffirms my decision to keep her in preschool for another year of growth and development. And seeing her achieve such a huge milestone so early in the school year does also take some of the sadness that I had felt out of that choice.

I’m so proud of Sophie. Things have never come easily for her, but she never gives up. It’s so interesting that so many things do come so easily to her brother, and he is so much quicker to give up. He sat down and was writing most of his name the first time he tried at just 3 years old. Kind of made me mad how easy it was for him! All the while watching Sophie struggle!

But she has learned perseverance through her difficulties.

Isn’t that straight out of James 1? “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance, and perseverance must finish its work so that you can be mature and complete, not lacking anything.” I guess I can see what James means now. It is the trials, it is the difficulties, that teach us how to persevere, how to press on anyways. And we need that skill. We need to be able to get back up again and again when we’ve fallen or been knocked down, when something is so difficult we don’t think we’ll ever be able to do it. Once again my Sophie girl is teaching her mamma the lessons. I’m so thankful to be a part of her story.

Some parents, it seems, through my contacts with other special needs moms and dads, HATE their kids’ IEP meetings. I’ve heard stories of tears. I’ve heard stories of having to hire lawyers and advocates to take to the school and even having their kids’ pediatricians attend meetings so that they can get the needed services from their schools. NOT SO with Lancaster City Preschool! They rock the IEP meeting!

Sophie’s first day of preschool in 2015. She was 3 & 1/2 and nonverbal. WOW.

I’ve been meeting with roughly the same “team” for over three years now as Sophie has slowly waded her way through preschool (which is typically just one or two years for most kiddos). I used to dread them because I was so afraid to spend all that time focusing on her deficits. BUT, the “team” is always so phenomenal about highlighting her strengths. And… they genuinely LOVE Sophie. We do ponder her difficulties and try to problem solve together what she needs. But we also laugh over stories of her antics. The bottom line is, they know how to do their jobs well, and they love serving my girl. Who could ask for more? I certainly couldn’t. But more was what I got when I went in for her annual IEP review this fall….

Each of her therapists and teachers shared their perceptions of Sophie’s progress (ALL AMAZED by how far she’s grown — her adaptive PE teacher actually dropped his jaw in shock and awe when he met with her this fall to assess her progress!). And then each specialist highlighted what new goals they have for Sophie for this year since she met almost ALL of her goals from last year. We’re working on fine motor skills like handwriting, cutting and such. We’re working on balance and leg strength. We’re working on some speech blends and on conversing with peers. We’re working on social skills. All this I expected.

One of my favorite pictures of Sophie stylin’ during her first year of preschool, shortly after school started.

The “MORE” part that amazed me was when it came time for her speech teacher to share. She was the last to go. (If you’re new to Sophie’s story, her lack of speech two years ago was the HUGE reason we initially sent her to preschool for services. She had about five words when she started preschool three years ago at 3 and a half years old.) So, Miss Renee said that all of Sophie’s current speech articulation deficits are completely AGE APPROPRIATE, and she could probably TEST OUT of speech this year!! Talk about a jaw dropper! I was amazed and thrilled to hear this! In two years, Sophie has completely caught up in articulation. Praise God! This was SO encouraging to me!

We are, however, going to continue speech this year to work on the social piece of the puzzle. Sophie’s introverted, which is fine, and struggles with anxiety, so relating to peers isn’t always easy and isn’t always her preference. Other times, though, she performs with perfectly appropriate social skills. It’s kind of baffling. So we’re still working on that. I’m thrilled to report that she has also made a new friend in this first month of preschool. Her BFF of the last two years went off to kindergarten this year, and we noticed a gaping hole in her absence. We do miss our Evie so much!! Sophie’s new friend, who is also named Sophie, is very sweet and such a good helper to Sophie! After school they often have to hug each other goodbye. Aww!

My poor baby is falling asleep AT SCHOOL in the middle of all the chaos. Jesus give us sleep, please!

So we are off to a great start at preschool this year! Now if only we could get her sleep adjusted, we’d be all set! We are so thankful for her preschool, for her “team,” for all those who have helped her in her journey. We are truly blessed by all the support we’ve received. I’m reminded again that unless we experience difficulty in life, we often miss blessings. There are so many opportunities for blessing in the difficulties that we go through. Sophie’s “team,” as well as all of you who love and support her through my blog, are the blessing we would never have experienced without Sophie’s struggles. I find that our God is more than able to “work all things for the good of those who love him, who have been called according to his purpose.” It was so good to see through the eyes of others how far Sophie has come in the past two years. Sometimes I lose sight of this because I’m with her every day, and I’m in the trenches with her in her current struggles. Two years ago we weren’t even sure if Sophie would be able to speak. And now here we are, crushing goals left and right. When we are in the difficult and impossible, that is when we truly see how much God is able to do. I’m tucking that little gem away in my mind as we’re in the trenches of our current difficult things. God is able to bring us through all of this, just like he did with speech. Two years from now, everything may look very different. And if I know anything about my loving Father, I know there will be continued blessings along the way.

So life with Sophie lately has been a series of battles and meltdowns. In case you don’t know, Sophie has been struggling with some unidentified issues — certainly anxiety, possibly ADHD, maybe sensory processing disorder. I don’t want to project these things on her, but this is what I’m seeing in her behavior, as much as I don’t want to see it. My heart has been heavy as we wait for her coming appointment with the developmental pediatrician, and for her referral to a psychologist for a full neuro-psyche evaluation. There are many overlapping syndromes and conditions that fit with the issues Sophie is struggling with. It could be as mild as anxiety. It could be as severe as autism. Whatever the case, life with Sophie can be challenging. Call it whatever you want to.

And on top of that she’s not sleeping right now. So that’s special. She’s lost her nap to her all day preschool class (which is AWESOME —I mean, the class is awesome, but the nap loss, not so much). And, although she’s five, she evidently still needs a nap. Because she’s been a real treat since giving up that sleep. And if that wasn’t enough to throw her into a emotional hurricane, then there’s the fact that she’s been rising every morning between 4:30 and 5:00 AM. You can guess how much the mommy and daddy of a new baby who still gets up at night just LOVE these early wake up calls. Right. So, she’s subjected herself to even more sleep deprivation. Because once she’s up, the girl is up. She is ready to start the day. W.I.R.E.D. She wants to do all the things at 5AM. All. The. Things. There is no more sleep for Sophie once her eyes pop open.

So, imagine with me how you cope with life on the days when you’ve decreased your amount of sleep by 2-3 hours. Yikes. That’s not pretty. Even for me as a grown up, it’s not pretty. Imagine doing this for a month. Are you tired yet? Now, put that on a five-year-old, with special needs, who can barely cope with life as it is. Are your eyes bulging yet? Because mine are…

I so wanted to enjoy this season with Sophie, her last summer break before entering a full day of school. And I truly did enjoy some of the moments. But there were so many days when I thought I was losing my sanity. Actually, I’m still there. There are many moments when I still completely lose my chill. Like, where is Catherine’s chill? Is that it waaaaaaaayyyy over there in Canada? Oh, yep, that’s it. Gone. No image of Jesus here. Just a crazy lady.

I have, at times, in this season, lost sight of the joy of being Sophie’s mother. Much of my time with her is just bound up in frustration, because she’s not being who I want her to be. That sounds terrible to say, but I’m sure that at least one or two of you can relate to a non-enjoyed season of parenting. I feel in a very real sense like I’ve lost my sweet Sophie who I knew for the past four years before this. Where did that girl go? I liked her. I would definitely say that I’ve lost perspective. Believe it or not, there’s freedom in this realization. Because now I can strive to regain perspective, to journey the path of acceptance one more time, which I’m sure will not be the last time…

On a recent Sunday my pastor prayed for those who were feeling discouraged. He said that God had shown him that many of us were feeling that way, and God wanted to speak encouragement into those areas for us.

Great. That’s me. I’m ready, God: Lay it on me.

Immediately I called to mind a passage from a book that I read probably at least a year ago. It’s from Jennifer Rothschild’s Lessons I Learned in the Dark. She’s writing about receiving difficult gifts from God, as her blindness was to her.

“One reason that many people struggle with bitterness or ungratefulness is that they’ve never learned to receive difficult gifts… Often we struggle with an attitude of ungratefulness because our eyes are fixed so fiercely on the gift… But if we fix our eyes on God, we can see beyond the difficulty of the gift into the heart of the Giver. Regardless of whether we asked for it or want it, it’s a gift of God’s grace, and our response should always be to receive it with thanks.”

God spoke: Sophie is a gift. Hold her hand. Walk with her. Show her Jesus. She is a gift to you, not to somebody else, not to any other mother, to you. Let go of who you want her to be and receive who I have made her to be.

Sophie is a difficult gift for me right now, or perhaps her possible disorders are, but she is absolutely still a gift. It is time again to let go of who I planned for her to be and to walk forward into what is. It’s time to once again embrace God’s story for Sophie instead of my own.

Today was Sophie’s second full day of preschool, and we knew there was going to be a fire drill. Sophie is very afraid of loud noises, and she was very anxious about the fire drill. Afraid is actually maybe the wrong word. Sophie’s whole being is affected by loud noises because of the way her brain processes them. She enjoys the bands in the holiday parades, but her whole 35 pound body shakes as they pass by. She does not enjoy fire alarms, so I imagine it’s the same physical reaction, except with a negative emotional association.

I trace this back to Sophie’s very early experiences — when she was just one year old she underwent multiple MRIs because of her developmental delays, and she was awake for them. I can’t recount the horror of these experiences, because my husband bravely went into the MRI tube with her instead of me because I was pregnant with our son, Micah. He tells a harrowing tale though… Anyways, loud noises are an issue for Sophie, so much so that, along with other issues we see, we expect her to be diagnosed with sensory processing disorder when we see her developmental pediatrician in the fall.

Back to the fire drill. Sophie was filled with anxiety about this fire drill. My mama’s heart was hurting for my girl, big time. I wanted to be with her to comfort her through the experience, but 1) I don’t attend preschool, and 2) that wouldn’t help her grow. So I did the best I could coaching her the day before and the morning before school that day. I had no idea the doors that would be opening in our conversation on the way to school that day all because of a little fire drill. And I want to share that conversation with you.

“Sophie, Jesus can help you when you feel afraid. Remember our Bible verse? ‘When I am afraid, I will trust in Jesus.’ Jesus can keep you safe when you’re scared.”

Sophie responded, “But I can’t see Jesus. Where is he?”

“Jesus is invisible. But he is real. And he can come and live in our hearts so that he is always with us. And he helps us whenever we ask for help, like when we’re scared and we need to be brave. But we have to ask him to come into our hearts so he can help us. He saves us from everything that’s bad in the world,” I replied.

My eyes filled with tears as I heard her reply, though it wasn’t directed to me. “Jesus, come in to my heart. I don’t want to be bad.” What a sweet prayer. Sophie continued, “But I didn’t see anything,” confused that she hadn’t seen Jesus enter her heart.

So, I explained, “We don’t see Jesus come into our hearts, but we can feel him. Because he’s in our hearts we can feel different. Like when we are scared, Jesus can help us to be brave.”

“But, I’m scared of the fire drill,” she affirmed.

“It’s ok to be scared,” I said, “You can ask Jesus to help you when you feel scared.”

“Help me, Jesus,” she prayed. And then she asked me, “But why do we have to ask Jesus into our hearts?” (Best “why” question I’ve EVER been asked!)

And I explained, “It’s like when we have a friend over to our house. We have to invite them over before they come over and come in to the house, otherwise they don’t come over. So we have to invite Jesus into our hearts just like that.”

Again, she prayed, “Jesus, come in to my heart.”

I love these unprompted prayers. I know I’m hearing her heart.

When we arrived at the school, I asked her if she wanted to pray together before I took her in for the day. And she nodded. So I prayed, “Dear Jesus…”

And she repeated, “Dear Jesus,” then added right away, “I’m scared.”

I love hearing her heart pour out to Jesus! And I added, “Help me to be brave today.”

“Help me to be brave today” she repeated.

And off we went to class. Her teacher tells me she did great with the drill. I knew she would because her tiny 35 pound self was carrying the King of the Universe in her heart.

In the end, all I want to do is point my kids towards Jesus. That’s it. He’s the whole deal. I’ve never been more thankful for a fire drill.

Hundreds of thousands of five year olds are headed off to kindergarten this week. But not my five year old. I see dozens of first day of kindergarten pictures cropping up on the newsfeed. But not on my wall. And it hurts every bit as much as I thought it would. My sweet Sophie is left behind. Several of my close friends also had children the same year that Sophie was born, and I am watching them all head off to kindergarten this fall, as Sophie prepares to go back to preschool for another year.

Last spring we labored over the decision of whether or not to register Sophie for kindergarten this fall. And we (wisely) chose to wait, giving her one more year to grow and progress with her fine motor skills and social skills in preschool. We know we made the right decision, the best decision for Sophie. But that doesn’t minimize the pain of our choice. If you are a special needs mom, I guarantee you know this dichotomy well. We don’t doubt that we made the right choice, but sometimes the right choice is still one filled with pain. Yes, I feel peace and a certainty that I’ve done what’s best, but not gladness. I wish I didn’t have to make this choice for Sophie. I wish that she were going off to kindergarten with all those other babes born in 2012. My heart breaks that she’s not. Yes, of course I love my daughter just as she is. But I find that at each new stage of life, acceptance is a new process to start all over again, especially in these moments where Sophie seems to be left behind.

I really feel like I’ve been watching her get left behind her whole life, as her peers sat up and crawled, then walked, as babies. As they began to talk. As they began to make new little friendships. Left behind. It’s painful. And it leads to the fear that she will always be left behind, throughout all of her life. Never take for granted the gift of having your kiddos be doing the right thing at the right time. Everyone always says, “It’s ok, she’s just doing things on her own time. She’s perfect the way she is. Don’t worry.” And I smile, always appreciating the sentiment, for sure. But the reality of having a child who doesn’t do what society says is “normal” or “on time” will never not be hard as a mother. Please realize that. It will never not be hard for me. If she’s 5 and not ready for kindergarten or 16 and not ready to drive… it will never not be hard… acceptance will always be a process.

I am equally sure that she will have a wonderful year of growth this year in preschool. We are so happy with the all day program that she’ll be in. And her teacher and aides are WONDERFUL! I expect to see her much more fully prepared for kindergarten after this year, and that brings my heart a lot of peace. Her fine motor skills are growing in leaps and bounds. She’s actually interested in writing letters now, even though she still can’t do it. Interest is always the first step, so I know her writing skills will begin to emerge soon. She’s become quite a whiz with the scissors this summer, too. (My floor is often adorned with multi-colored construction paper confetti!) And I hope that her social skills will also improve this year. Hopefully they’re just lagging behind, like other things, and not another serious red flag to consider.

So where is God in all of this? I’m not sure. Usually my Sophie Stories are full of faith and how God is leading me to trust him. This, my friends, is different. This is raw. This is the sanctification of my soul through mothering Sophie with all the delays she has had and continues to have. And God is in this too. But it’s a different kind of journey. It’s less of a faith journey right now, and more of a battle for my soul to look more like Jesus as I labor through parenting Sophie. I’m ok with that.

I’m also reminded that I’m playing, once again, at the dangerous game of comparison. I learned early on as Sophie was left behind that the comparison game did little but steal my joy. So I’m choosing to turn my eyes, or at least my hurting eyes, away from all those adorable pictures of new kindergartners. I’m choosing to look instead on the beautiful child God gave me, and I’m trusting that he knew what he was doing when he gave her to me, just as she is, just as I am. I’m trusting that the eye of Jesus is never turned from Sophie, and I’m remembering that he loves her more than I do. I know this year may hold some difficult things for Sophie as we head back to her developmental pediatrician in the fall. My mama’s heart is already aching. But I’m trying to beyond all of that, searching for that big picture faith that helps me walk through all of it.

Jeremiah 29:11 “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you a hope and a future.”