Tablet of her Heart

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.