Category Archives: Sophie’s Story

Earlier this month I took my littlest love out for a mommy date at the local pottery shop. Hannah loves to paint, anything, any day of the week, so this a perfect outing for her. This time she settled on a playful looking puppy for her painting project. We headed to the paint station to fill her pallet with various colors – brown, black, red, pink, blue (who knew a dog could have so many colors?!), and she eagerly took the first strokes of brown, her base color, on the dog. She paused after those first strokes. “Mom, I don’t like this color at all! It looks horrible!” Sadness and distress filled her voice.

I quickly reminded her of the projects that she had done in the past, and how the colors change when they go through the heating process. I took her back over to the paint station and I showed her the brown paint that she had chosen on a baked tile which was displayed to show the finished color. She was greatly relieved as she recalled her first project, how dull it looked at first, but how brilliant it looked when we picked it up after its time in the furnace. And her confidence was restored when she viewed the chosen brown color on the demo tile. She had forgotten that the beauty of the project was forged in the heat of the furnace.

 

…. The beauty of the project is forged in the heat of the furnace…. I think I had lost sight of that too.

 

Our oldest daughter Sophie has been struggling with her anxiety this winter. It is one of her daily battles, but it is always worse in the winter, for a whole variety of reasons. It’s so dark for so many hours. There is so little outside time. So little active playtime. There are time changes, schedule irregularities, holidays, birthdays, and swim meets. Even the positive stressors are simply added to the brain as “STRESS.” Having experienced true anxiety in brief seasons as an adult, I wish more than anything that I could remove it from her, or at least speed up the process by which she grows to learn how to cope better with it. I hate to see her struggle. She acts out at school and at home, she has meltdowns, she can’t cope with her big feelings. And I can’t fix it.

But as I talked with Hannah at the pottery shop that day, the Holy Spirit reminded me that the beauty of Sophie’s life is forged in her struggle. None of us want to see our kids struggle – it’s so hard! But the truth of the matter is that struggle is where our character is formed. Struggle is where we run out of ourselves and run to Jesus. Struggle is where we grow more like Him. I am who I am today because of every struggle I have endured in my life. We do our kids a great disservice if we try to protect them from every struggle, if we fight every battle for them. They need these opportunities to grow their character. And God is in this with them. Sometimes we think that our role as parents is to make life easy for them – to fix it all, control it all, protect from it all— but they won’t grow if everything is always easy, every mistake fixed, every problem shielded. The truth is God is developing character and beauty in Sophie’s life, and in all my children’s lives, because of their struggles. It’s hard to watch her struggle in the heat of this furnace, but I know God is making something beautiful.

 

How timely that Sunday’s message centered on Philippians 1 where this amazing promise is found: “Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus” (v. 6)

 

Just like Jesus Christ has been at work in all of my struggles to complete the work he is doing in me, he is continually at work in my children as well. As they go through difficulties, I am confident that he is building beautiful character traits in them, forged in the heat of their struggles. He sees the scope of their lives and the character that they need to build now for the plans and purposes he has for them down the road. What a gift to be able to trust Jesus with my children.

 

Whether you are the one feeling the heat of the furnace right now, or you, like me, are watching your children struggle, I hope you are encouraged by the words of Philippians 1, and by the lesson I shared with Hannah that day in the pottery shop. Look back on your past projects, if you will, where your character was shaped by a struggle. Remember that the beauty of your character was forged in that furnace. Even if the colors of your struggle look dull and unappealing right now, know that He is working to make something beautiful. Even as you’re feeling the heat, know that beauty is being forged.

My nighttime Bible reading recently took me into the book of Ruth. I love a good story, and Ruth is no exception. On top of being a beautiful literary account, I love the symbolism that is found in the story. We, of course, are Ruth, in a helpless state, until Boaz, our redeemer, Christ Jesus, comes to redeem us as his bride.

This time through the story, I was particularly struck by Naomi’s character. Ten years of her life are covered in just a few short verses. Maybe it was that ten-year mark that caught my eye, since we recently celebrated Sophie’s 10^th birthday, and ten years of our journey in special needs parenting. When you’re reflecting on an era of ten hard years, you can feel how long this decade was for Naomi. Here’s a quick recap of her decade in case you don’t know the story. Strap in; it’s intense!

·      She left her homeland because of famine. (That’s rough all on its own.)

·      While she was sojourning in a foreign country, her husband passed away. (Heartbreaking grief.)

·      On top of all that, her two sons also die while she is in the land of Moab. (I cannot fathom the loss and grief that Naomi must have carried. It is soul-crushing.)

Ten years go by in the land of Moab. She’s alone with only her daughters-in-law, probably wondering what in the world she did to bring this on herself. Now, husbandless and sonless, she decides to return to her homeland, Judah. She tries to release her daughters-in-law to return to their households so that they can start fresh and have a new life. A hope and a future. Children. But of Ruth does not return to her home and swears to remain with Naomi, covenanting with her for all her days.

When Naomi returns to Judah, imagine the stir in the neighborhood. Her grief, no doubt, has aged her. No one there knows what has happened to her family. There were no text messages or social media posts detailing her losses in Moab. When they greet her by her given name, Naomi, she responds, “Do not call me Naomi; call me Mara, for the Almighty has dealt very bitterly with me. I went away full, and the Lord has brought me back empty” (Ruth 1:20). Phew. What a staggering synopsis of her last ten years. Naomi is embittered, emptied, and a shell of who she once was.

Can anybody relate?

Whether you’re reflecting on the last decade, the last couple of years (hello, pandemic), or just the past few months, I know we all have seasons where we feel just like Naomi felt – mistreated by God, bitter, bereft, empty. The new name that Naomi has chosen for herself, Mara, means bitter. It is the essence of who she is now.

Oh but Naomi cannot indeed see the whole story. I’ve read the whole book of Ruth, and I know that all God stripped away from Naomi, he returned in greater abundance. All the sorrow that he allowed was from a heart of love. Because in Judah, Ruth was redeemed by a kinsman, Boaz, who gave her a son, Obed, who in turn had a son named Jesse, who was the father of King David, the greatest king of Israel. Beyond that, Ruth’s genealogy is traced down to Christ Jesus himself. While Naomi did lose a husband and two sons, she was granted a position in the lineage of Jesus Christ the Messiah!

Hindsight is always 20/20 right?

But oh that we could learn to view life as it happens through the lens of love. Whatever hard things God has allowed into our lives, he allows from a heart of love.

As we muddle through our life parenting a child with a disability and doing our best to raise two typical children in a very non-typical family, it can be easy to feel heavy. We continue to struggle to find a way to help Sophie sleep through the night, and it affects all of us. We are often physically so very tired. Literally weary. There are times where the struggle is so intense, and it feels unending, hopeless. But these are the times where, if I notice, I find that my eyes are on my circumstances, and not on the loving nature of my God.  There is loss and grief in a life touched by disability. But my prayer is that I not allow myself to so misinterpret my circumstances to think that God has dealt bitterly with me. I choose to believe that God is always kind and that he always acts from a heart of love. I am living his best plan for me. There is life here, growth and goodness to be found. If I choose to look through the lens of love.

I don’t know what your circumstances are that tempt you to despair or to feel that God has dealt bitterly with you. But today I want to encourage you to look at your life through the lens of love. Whatever he has allowed to be stripped away, like Naomi’s loss of her entire family, God intends to restore to you. If not here on earth, certainly in heaven, all will be made whole, and right. Whatever difficult things He has allowed in your life, He fully intends to use for good as part of his perfect plan. I pray you receive these words as the Word of God, and not as cliché “band aid” type statements. These are God’s promises to you, and you can stand on them when it is difficult to see his love through the pain of your circumstances.

As the book of Ruth closes, the townswomen say to Naomi, “Blessed be the Lord who has not left you this day without a redeemer, and may his name be renowned in Israel! He shall be to you a restorer of life and a nourisher of your old age.” (Ruth 4:14) Today may you find through the lens of love that God has not left YOU without a redeemer, that he shall be to YOU a restorer of LIFE, and a NOURISHER to your soul, no matter where in the journey you are.

 

My sweet Sophie turns 10 years old this weekend. It’s hard to wrap my head around. As this milestone quickly approached, it has caused me to reflect a lot on the last decade. Ten years. Ten years since our special needs journey began. I wish I could say it has gotten easier. And I suppose in some ways it has. But in many ways, it only grows more challenging as she ages. In the last ten years, I have seen in myself some of the most epic failures as a mom because it all just became too much for me. But the view from this ten years’ precipice is a breathtaking view of God’s grace, of growth, and of so much LIFE born from our struggle. There is beauty and goodness and a depth to my faith that would not exist without this journey.

 

So this I will say to you today as I reflect on our decade: Allow your struggles to draw you closer to Christ. He is right by your side. His hand is yours to take. He longs to walk WITH you. He longs for you to grow through your struggles, if you will choose to do so.

 

Faith alone has led me through the past ten years. It guides me today. And it holds all my tomorrows. Faith in the One who never changes with every sunrise and sunset, with every meltdown and medication change.

 

The Refiner’s fire is HOT. Don’t mistake that. We feel the heat in our struggles. But those times in the furnace are creating such BEAUTY in our lives. Truly, if not for all that I have grown through in Sophie’s journey, I would not be where I am today. The faith that comes through in my writing has been grown on this journey. The heart that I share here on my blog is a heart led by a good Father through many difficult days, months, years.

 

As I returned to writing at the close of last year, God gave me a verse as a purpose for my writing. It has always been the reason that I write, but this brought new clarity to the fact that my writing is HIS, for his glory.

 

“You are a letter from Christ, the result of our ministry, written not with ink but with the Spirit of the living God, not on tablets of stone but on tablets of human hearts.” (2 Corinthians 3:3)

 

God is writing the story of his love for me on my heart through our journey with Sophie. God is showing me his great power through my great weakness. And my life is a letter for others, I hope showing them the way to follow Christ.  So if you are struggling today, think about where you might be a decade from now if you take Christ’s hand and say yes to what Jesus has for you in the journey. Yes, there is pain and heat, but there is SO MUCH LIFE, for you and for others who walk with you.

 

Here is a highlight reel of ten years of beauty. There were many difficult moments in between, but allow these to stand as evidence of a good, loving, faithful God who can grow your faith through any struggle.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sophie is now in 3^rd grade at our local school district. She lovingly calls the Principal, “my best friend.” She is surrounded by a fantastic team of professionals who ADORE her and are always working hard and thinking creatively to help her reach her potential. She is growing a ton this year academically and socially! She has a best friend, and can often be found surrounded by a group of her peers. Her teacher has done an excellent job of fostering empathy in the classroom. As Sophie grows, some of her differences become more evident, but her classmates care for her so well. I am so incredibly thankful for this.

 

Last spring we added epilepsy to our long list of diagnoses after Sophie suffered multiple seizures one morning. Since starting medication, she has not had any more seizures. I am so thankful that her epilepsy has been easily managed thus far.

 

Less easily managed are ADHD and anxiety. Can I get an amen?! We are still working closely with her pediatrician to find the right combo of medicines to help our sweetie sleep well every night and combat these two giants in her life.

 

I don’t know what our year ahead will hold, but I do know the One who is holding our every moment. Looking back over this decade as a whole, I am more thankful than ever that God chose me to be Sophie’s mom. Although there is a lot of hard, there is so much growth, so much life that has come through her journey. Take time to reflect on your own journey today. God is doing amazing things if you take the time to see them.

 

 

Skydiving is something that I hope I never have to do. For many people, it’s on their bucket list, something they want to check off while they’re on this earth. But not me. I don’t really even like flying, let along leaping from a plane aloft. No thank you.

 

This week I was listening to a testimony of an Ohio athlete, and she compared following Jesus to skydiving. My mind quickly began processing this idea – one thing I very much love (Jesus), paired with something else that at the very least I have no interest in, and at greatest, terrifies me beyond reason. I don’t want them to be the same!

 

But, here’s the thing – she’s right. Following Jesus is in some ways like leaping from a plane because it takes faith. Faith that the parachute will open. Faith that Jesus will rescue you.

 

Sometimes we let the bad things that happen to us in life convince us that Jesus has allowed our parachute not to open, and that he’s allowed us to spiral towards the ground and go splat. Pain. Destruction. Ruin. Rejection. Illness. Disability. Death.

 

But the more life I experience, the more I realize that Jesus never lets that happen. In fact, sometimes the very awful things that we walk through are the parachute of his rescue. You see, Jesus is not so much concerned with our comfort and our happiness; he’s concerned with our character and with our eternity. And he uses every single difficulty that we encounter on this earth to redeem and rescue our souls.

 

The story of Joseph is a testament to this truth. I cannot imagine literally being sold off by my brothers as a slave to a foreign nation. (Thanks for never doing that, bro!) I cannot imagine being wrongly accused of so much and imprisoned for years because of it. Oh, the injustice! Why is Joseph not an angry and cynical being?! After all the years of Joseph’s struggle, when he finally reconciles with his brothers, he says this:

 

“You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” (Genesis 50:20)

 

Joseph had to have felt like his life was one failed parachute moment after another! Yet he chose to see the good that God was doing in the midst of all of it.

 

When my daughter was diagnosed with autism, I very much felt like my parachute had not opened, like God had not come through for me. But as I have walked this journey with her, I can agree with Joseph, that “God intended it for good to accomplish what is now being done,” and maybe even I would go so far as to say for “the saving of many lives.” Sophie’s disability has opened doors for me to ministry that I never would have imagined for myself. In many ways, I am who I am because of who she is, and I am doing what I’m doing because of her life and how God is using all of that to shape me. That doesn’t make it an easy journey, but then, I don’t think easy is really the point.

I’m honestly not sure what kind of a person I would be if it wasn’t for my difficult life experiences. In every moment that we feel like we are spiraling toward the ground, and the parachute isn’t going to open, we have a choice. We can choose cynicism, anger, fear, doubt. Or we can choose trust. We can choose faith. We can stand on the promise that God is working for our good, even when it is impossibly difficult to see it. And not just for our good, but for his bigger picture good, for his story, for “the saving of many lives.”

 

 

As many parents faced the difficult decision this summer about how to choose schooling for their children, I made the choice to jump headfirst into the deep end. I chose homeschooling. I chose this not because we’ve been unhappy with our local school. On the contrary, they have been some of the sweetest, most supportive and encouraging people I could ever ask to have on my team as I raise my autistic daughter. I knew that homeschooling her would be difficult, but I felt that in making this choice, I could provide the one thing for her that the school could not promise this year, because it, too, was beyond their control. I could provide her with consistency. No switching between school formats. No blended learning, with this day being one format, and that format another day. No potential for weeks of virtual learning. (Can I tell you how much my kids LOVED virtually learning?! They did not.) I chose consistency and control over what my children would be learning this year when I chose homeschooling.

 

It has not been without much grief over the loss of such a wonderful team who has helped Sophie grow the past two years. (And Micah, too!)

 

Today as we headed out for a walk, we heard a car slow and pull near. As I looked over, I heard a familiar voice, “Hi Sophie-Girl!” And there in her black SUV sat one of Sophie’s special ed helpers. I was surprised by the onslaught of emotion I felt as we talked for a brief moment about how much we miss school and how the school team misses Sophie. I told her, “We may be back. It has been really difficult working with Sophie with no support.” I fought the tears as she pulled away. I felt alone. I felt the loss of a great team.

 

As we resumed our walk, Hannah (three) called out to her big sister, “Hey Sophie! Wanna hold my hand?!” They walked along, hand in hand. This made the tears come faster as I felt God’s whisper – “You are never alone.” The support looks different this year, but I am not alone in this journey. God placed the exact people in our family who were meant to be Sophie’s teammates and mine. He has also brought numerous friends with years of experience in homeschooling alongside me, as well as a few who are new to the adventure. I am not alone in this. Yes, we need to get some therapies in place to support her growth, and we are working to do that. But God knew what he was doing when he chose us to be her family, her team, her cheerleaders, and led us to choose homeschooling.

 

Micah recently told me he thought I was the “perfect mommy” (which of course touched my heart), but I reminded him that I’m not perfect, though I try really hard to be a good mommy. He said, “Well, then maybe I should say you’re the perfect mommy for this family.” I don’t often feel like I am measuring up, but I am doing my best to be faithful. My word for the year: “faithful.” I’m thankful for the reminder that God did choose me for this task, and I’m thankful for reminders like our walk today that I’m never alone.

 

Do you feel alone in your journey right now? So many of us are walking paths that we would never have chosen for ourselves. But God did choose them for us. And he is good. Praying today that you feel a sweet reminder that you are not alone in your journey either.

 

 

Sophie finished kindergarten in May in good standing. Her reading level was early first grade level, and her math was progressing. It’s not her fave. Her handwriting continues to be a struggle for her, in particular because of her low muscle tone. All in all, her abilities seem to be what they should, but getting the child to focus, oh boy!

Near the close of the school year, we met to review her IEP, to make updates and to prepare for first grade. Throughout the meeting, over and over again her focus kept coming up as a problem. She’s a smart girl and she behaves well, but she was very busy and unfocused in the classroom. Her teacher feared that the level of independence required for completing work in first grade would cause many challenges for her.

So this summer we decided we would give ADHD medicine a try. I know people are all over the map on whether or not to medicate children for ADHD. After the past week, I understand that struggle. It is hard watching your child’s emotions swing wildly because of a substance you put in their body. It is hard weathering the sleepless nights with your child fighting insomnia. It is hard forcing your child to eat because they’re appetite-less.

But.

Today was day 5, and boy did we turn a corner.

Sophie and I have been doing school worksheets together pretty much every day this summer in order to prevent the summer slide. When kids take an extended break from schoolwork, their abilities tend to slide backwards. So I knew if we were to see any improvements from medication, they would be easy for me to spot. Sophie’s unmedicated limit for worksheets was about 1 to 1.5 worksheets. This week even on the difficult days, we stretched that to two or three sheets.

Today blew my socks off. Check it out!

I have never seen Sophie color inside the lines for any length of time. While she might start a coloring page and begin as if she were going to color inside the lines, she would quickly move into scribbling, and then abandon the page altogether within a couple of minutes. Today saw at least 45 minutes of solid coloring. Inside the lines. You probably think I’m crazy to be as excited as I am about this. But for Sophie it is huge. See that’s the thing about ADHD, it masks a child’s true abilities. All along Sophie has had the ability to color inside the lines, but she has lacked the focus to do so. Time will tell if she can overcome the side effects enough that the good of the medication outweighs the bad. It was scary taking this plunge, but I’m glad we did if there’s even a chance that it can help Sophie be more successful!

Six months ago today Sophie was diagnosed by her school psychologist with Autism. After six months, there is still a part of my heart that breaks to write that sentence. There is still a part of my heart that denies its truth. I wonder if there will always be. I don’t know. I do know that there will for certain always be a part of my heart that rages against what’s broken in our world. Sophie is a beautiful creation of God, but she, like allllll the rest of us, is not free from the reaches of sin and brokenness. I rage against cancer. I rage against drug addiction. I rage against so many wrong things that we accept as our identities in this broken world. So maybe there will always be a part of me that rages against autism. But what I have realized over the past six months is that none of that is a reflection of my acceptance of my Sophie girl, just as she is. I used to feel guilty for being angry about her diagnosis, as if that anger was some rejection of her. But it’s not. We’re allowed to be angered by the things that are wrong in our world. Time has allowed me to see that each of my children has a “brokenness diagnosis,” though they all look different. There’s no reason to single out autism as some sort of worst case scenario in the “brokenness spectrum,” if you will.

Six months ago I sat in a meeting room at her preschool. And I listened as item after item on her screeners pointed to autism. They were like giant boulders, crushing my heart, weighing me down in utter heaviness. There’s really no other way to describe it. Such heaviness. In those first weeks of raw grief, compounded by the loss of our dear Granny, I mostly functioned in disbelief and doubt. Disbelief of the diagnosis, and doubt of the future. There have been many valleys in the last six months. Many frustrations. I’m not proud of the moments I lost sight of the big picture, of the moments I lost sight of the good, and the moments I didn’t cling tightly to the truth of God’s promises. And definitely a few moments where I completely lost my chill. But as we’ve approached this six month mark, I’ve taken the time to reflect. If you don’t reflect often, I encourage you to make it a practice in your life. Looking back for markers of God’s faithfulness in your life is a powerful faith builder.

Six months ago I had so many apprehensions about how Sophie was going to do in kindergarten. I knew that academically she was ready, but I had some wild notions about how her ADHD might interfere with her academics. (Will she ever learn to read?!?!) And I had concerns about her sensory issues, her anxiety, her muscle tone’s never-ending implications with everything from handwriting to bathroom needs. I had concerns about her transitioning to a new team of therapists and aides, to a new school with “big kids” around. Reflecting back on these last six months has served as a important reminder that God is both worthy of our trust and worthy of our praise.

While our summer just post diagnosis did indeed threaten my sanity at many moments, my time spent with other moms helped me to realize that this is a totally normal mental state for us in this stage of life with little ones. We’re all on the crazy bus together. Moms, if you’re starting to feel like you’re alone on the crazy bus, call another mom and talk for five minutes. That’s all it will take for you to know you’re not alone. Better yet, spend time with her and her kids. Then you’ll see firsthand that your kids are just a normal kind of crazy, even if they are “on the spectrum.”

And now, to the point of my update. How is kindergarten? So good. Sophie is rocking kindergarten. My Jesus took the time to put both adults and children around her who would love her and support her. As was the case in preschool, Sophie is loved by her classmates. Her teacher commented that she has an “unusually kind” group of kiddos this year. That makes me smile. I think she has an unusually kind teacher as well. She is a great match for Sophie. Sophie is very friendly with her peers and is accepted fully by them. She’s adjusted to the routines and rhythms of school. And she finally knows which days she has library, or art, or music class. While she’s had to overcome some anxieties at drop off and pick up times due to the noise and commotion, she has boldly soldiered on, even when she’s anxious. God love those noise canceling headphones!

This October I had the opportunity of leading a group of kindergartners through the Halloween party that the four kindergarten teachers had put together, which consisted of six different centers that 90 children worked their way through. I had a group of 12 kindergartners. What an experience! Some of them were your classic over-achievers, coloring all inside the lines and whatnot. And some of them were just as scattered as my sweet girl. I had to help them gather up their items, hold the discarded pieces of their costumes, and encourage them to rush to the bathroom when it looked like they might not make it on time. In sum, it was eye-opening to see the variety of stages of development that all kindergartners are in. Since there’s only one kindergartner in my house, this was a new view for me. Perspective is so helpful for the special needs mom. Yes, my kid has issues. EVERY KID HAS ISSUES. And every kid has always had issues. And WE ALL TURNED OUT FINE. It’s going to be just fine. Calm down, Mamas.

And, as for her academics, Sophie has grown in leaps and bounds. She is indeed reading! My little book worm, nerdy, book-loving heart is doing flips! I LOVE reading with my Sophie-girl. When we got our list of sight words in August, I had some questions about how that whole thing was going to go. But it has gone great. Sophie mastered her first list of sight words and earned herself an M on the report card. (Kindergartners get L for limited, P for progressing, and M for mastered to help parents see where their strengths and weaknesses are.) Her handwriting is coming along, though this is an area where she will have to continue working hard.

What am I learning as I move through these first six months? What has my reflection shown me?

Keep trusting. God has been good, and he will be good.

Be ok with today. Even as I write this and recount all her great progress is kindergarten, my mind flits to first grade. But will she be ok in first grade? Doesn’t matter. We’re not there yet. And when we get there, his grace will be enough.

Don’t be isolated. Crazy mom syndrome just gets worse when you’re alone for too long. I feel like this is true in spades for special needs moms. Us Mamas need each other. I am thankful for my mom friends. Phew. Jenny Jessie Jacqui Lindsey Chelsi Marie Lara Hil Carmen Lauren Lisa Stephanie Amanda Naomi Kristine I’m lookin at you girl. If you’re out there thinking, Man I need a mom friend, hit me up. I will be your mom friend.

I’m relieved and glad to feel like I am starting to finally regain equilibrium. Not every day is a good day, but I think every mom who has to get three little children out the door by 8:30am will tell you that not every day is a good day, autism or no autism. The truth of the matter is that Jesus is in each day, if you look. His goodness and grace are alongside even the difficult moments. But you have to look. It’s easy to see the yuck of the day. But the search for Jesus is rewarding and life-giving. It’s worth the look, even if you have to look back to find it.