Category Archives: Sophie’s Story

This morning we gathered our clan and headed out to church early. It was our week to volunteer, which means arriving early for the volunteer meeting. When Andrew and I serve on the same week, we bring out kids into the meeting with us, since neither of us can watch them outside of the meeting. As you would imagine, they create distractions, they whisper too loudly, basically unaware of “sitting quietly while the pastor speaks.” But we do our best to contain them through this brief meeting.

At the end of the volunteer meeting, we always circle up for prayer. We bring our children with us into the circle because they are an extension of our service, and to keep tabs on them. Sophie especially has a hard time being still and quiet for prayer. As we circled up, I shushed her, but our pastor’s wife, aware of Sophie’s journey, commented, “It’s just so good to hear her chattering.” And so I shared with her that today is Apraxia Awareness day, on top of being Mother’s Day, so it is an especially meaningful day for our family.

Two years ago, when Sophie was three, she was still completely unable to speak or even imitate sounds. Just after her third birthday, we took her to a private speech facility for evaluation, and she was diagnosed with Childhood Apraxia of Speech (CAS), a speech disability where the brain fails to coordinate the muscles of the mouth properly for speech. We were told at the time of her diagnosis, and as early as her second birthday actually, that she would require years of speech therapy if she ever were to speak. IF. That was such a devastating thing to hear spoken over our child. At that time we had no idea what Sophie’s journey to speech would look like. But we held on to God’s promises and his truth that nothing is too difficult for him, that he does all things well, and that he is indeed a good Father, no matter what Sophie’s future might hold.

Now five years old, Sophie is our little chatterbox. It is an inexpressible blessing to hear her chatter. She is a living testament to God’s goodness. Just as she showed each of those volunteers today how much she loves to chatter, she showed them how good God has been in her life. Apraxia is a difficult diagnosis, but it is not bigger than God.

So today I am especially thankful for the reminder of God’s goodness to our family, to me as a mother, and to Sophie, throughout her whole journey. Last year on Mother’s Day, Sophie painstakingly told me, “happy mother’s day” for the first time, and I cried tears of joy. A year later, I am greeted each day with her incessant chattering. It is a gift to be her mother (and Micah’s too).

Today, I am standing in faith with other mamas who have yet to hear precious words from their children who suffer from CAS. May they feel peace as they wait and may they never give up as they battle apraxia with their little ones.

Well, the day has finally arrived. It’s the first day of kindergarten registration, and I’m not going. I’m sitting on my couch in my lounge pants with my box of tissue, crying my eyes out. Ironically, I’m sure there are many other moms sitting on their couches this morning in their lounge pants crying their eyes out for the complete opposite reason — they’ve just registered their baby for kindergarten! It’s an emotional decision, no matter which choice mama makes.

When Andrew and I began this discussion process about kindergarten, we were in pretty different places, but as we spent time processing, praying, and talking with many people about our decision, we both had the same idea running through our minds when we finally sat down to discuss this last night: It will not do any harm to give her another year to grow and get ready. While, on the contrary, sending her too soon could set her up for struggle in her academic career. I love when God does this — brings two people to the same page in an important decision.

I have agonized over this decision. Being an educator myself has been both a blessing and a curse. School is, to me, about academics, because I teach high school. (Although in practice I do teach A LOT more than academics to my high schoolers!) But the general notion of school is that it has to do with your intelligence and your learning. And this is why I’ve struggled so — Sophie is completely ready academically for kindergarten. All of her teachers agree that she probably has more academic skills than some little ones who will start kindergarten this fall. Letters, sounds, shapes, colors, numbers and counting, she’s got it. So if she’s academically ready, why not send her??

If you’re new to Sophie’s Story, you may not know that she was born with a condition called hypotonia. It’s not a syndrome, but usually an indicator of a syndrome. In spite of much testing and many different types of doctors, we’ve never found a cause for her hypotonia. She has no known syndrome that we’ve looked at. But she does still have hypotonia. She will always have it. And it can be linked to just about every delay she has experienced.

Hypotonia is a condition of the muscles in which their tone is lower than a typical person’s muscles. I picture it like this: a typical muscle is like a tight, thick rubber band. It is strong and can hold more pressure than a long thin rubber band. Sophie’s muscles are more like those long thin rubber bands, or ones that have been stretched out and lost their tautness. It’s nothing to do with strength; it’s the physical structure of her muscles. When Sophie was a baby, hypotonia caused delays in her gross motor skills like sitting up, crawling, and walking. It also caused her delay in speech, because, even though we don’t realize it, there is great muscle involvement in our speech. Now we see it more in her fine motor development – handwriting, drawing, opening packages and using silverware, dressing and undressing, toileting needs, etc. In addition, because of her speech delay, we see some delays socially. Sophie didn’t learn a lot of social skills at the typical time because she was not able to speak. On top of that, she’s most definitely an introvert.

The educator in me revolts because I know that the purpose of Sophie’s IEP is to remove the barriers that could keep her from being successful academically. Her barriers are physical, and we could have accommodations in her IEP that would allow her to go to kindergarten and be successful. But, as I said before, Sophie will always have hypotonia, and we can never be certain when she’ll be able to master a given skill. If we send her to kindergarten too soon, while her IEP can help her succeed, we’re starting her course for the next 13 years, and thereby giving her less time to succeed at those lingering delays before they become more noticeable to other children. Please don’t think that’s shallow — the way Sophie’s peers perceive her will impact her development, and the way that she matches up to her peers will also effect her own self-image. We want to send her to school as able as possible. So while she is completely academically able, Andrew and I agree that she could only benefit from more time to catch up in some physical abilities, to grow more independent, and to continue growing socially.

Although I really do think this is the very best decision for Sophie, there is still sadness in it for me. I’m struggling to identify where that sadness is even coming from. I feel like I should just be so glad for such an awesome all-day program that she can do next year at preschool. I guess I’m coming back to the realization that acceptance is always a process, at every stage in the game of special needs. I struggle very much with people who misunderstand Sophie’s needs and think that she has mental impairments. I struggle knowing that others may assume she’s not going to kindergarten for intellectual reasons. (Hence my overly lengthy description of our reasons.) But no matter the sadness and the struggle for me, I choose to do what I think is best for Sophie. In my heart, I trust that God sees our year ahead and knows all the things about it that I cannot possibly know. We’ve committed our decision to him, and we’re trusting that he will bless Sophie’s life.

This morning my beautiful butterfly said these amazing words to me: “I’m good at talking.” To me, this sums up exactly how much she has changed in a year. Not only can she speak fairly well, with a huge vocabulary and complex thoughts, but she is confident in her ability. This is wonderful!

With her recent birthday I’ve already been very reflective on her past year. But we are also engaged in the process of trying to decide her placement for next school year, so my processing has been in overdrive, and I’ve had many conversations with people who know Sophie well and care about her future deeply. So many beautiful realizations emerging!

Sophie hasn’t had an incredibly academic year, which caused me some concern initially when pondering her placement for next year, but as I’ve reflected, I’ve realized the many other areas she’s grown which are equally essential for her future success.

* She’s substantially more toilet trained than she was even six months ago. Although we still have occasional accidents, we’ve said farewell to pull-ups!
* Her fine motor coordination has increased in many ways — from scissors and glue and crafts to dressing and undressing.
* Socially she has exploded with confidence. Even though she still often struggles to converse with peers, she’s aware of what should be said and done in social situations. And she grows more and more comfortable relating to people outside her immediate circle. The more I talk with her educators, the more I hear how important the social aspect of development is for success in school.
* And of course, her speech has exploded continuously since she began to speak 18 months ago. (Was that really just 18 months ago?!) Her vocabulary is just so big, and her sentences have become more and more complex.

So many wonderful gains! I’m so proud of my girl!

So now we are in the difficult place of deciding where to send her for school next year. We have two options, if you’re curious.

*  We can send her back to preschool to an all day class that is only for 5 year olds who need a little more time before kindergarten. There are no brand new three year olds in this class (nor even four year olds), so the teacher is able to accomplish a lot more academically in the day. Plus, the day is longer, allowing more time for learning. She would be remaining in the program we have loved for the past two years, but in a class more appropriate for her age and more challenging for her as well.

*  Or, we can send her on to kindergarten in the general ed classroom in our school district. This school is a block and a half from our house, which is fantastic. But wow! kindergarten! Yikes! I had all but ruled this one out as we began the discussion of where Sophie should go, but some of her educators do feel that she is up to the transition.

The weight of this decision feels huge! There are pros and cons to both choices. And I’m trying to keep in mind that both would be good choices — not one right and one wrong choice. (And of course there’s the emotions of pregnancy clouding my rational thought, which helps nothing!!) We meet with her “team” of teachers next week to get their input on the best placement for Sophie (how amazing is it that she has a team of almost 10 people who are concerned about her future placement and invested in her growth?!). I hope this meeting will give us insights that will help us make this difficult choice. Above all, we really appreciate your prayers as we make this decision.

Standing on 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.'”

And James 1:5 “If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault.”

We know that God will lead us and help us to make the best decision for our sweet Sophie girl! I’ll keep you posted on the decision……..

Today is my sweet Sophie’s 5th birthday! For her birthday this year, Sophie’s grandparents gave her a butterfly themed birthday gift, from a craft to a sweet twirly dress. Her grandma commented, “A beautiful butterfly… she has come out of her chrysalis this year.” I was struck by such a beautiful and perfect symbol for Sophie’s year. Although many days I have faced frustrations and discouragement with her, in reflecting on her year as a whole, I can see so clearly that her journey this past year has been beautiful.

When she turned 4, Sophie’s speech had begun exploding, but mostly at home. She was very shy around everyone else. Over this year, we have seen her emerge from her shell, gaining confidence to speak to others outside our home, and learning sass and spunk in her speech. Speaking fully in complex sentences now, some of Sophie’s favorite things to say these days include “I know what I’m doing, Mommy,” and “Don’t tell me what to do, Micah,” as well as “I’m just joking!” When I called her the “birthday girl” recently, she replied, “No, I’m not the birthday girl. I’m the birthday lady!” Spunky and sassy to be sure!

This Sunday as we came into church, Sophie saw her best little buddy, Isabella. She ran up and greeted her with a hug and said, “Hi, friend.” A year ago, she was only beginning to emerge from her shell; she would have been too shy for such a greeting. Our friends and family were lucky to get a wave a year ago, but now we see moments like this everyday.

This tiny gift which graced our lives 5 years ago has taught me so much. My mother often says that a woman’s true education begins when she becomes a mother. In many ways this is true for me. My journey with Sophie has developed in me a grit, a determination, a courage that I didn’t possess before her. I have stared bad news in the face and chosen to trust God anyways. I have faced discouragement and fear but kept walking forward in faith. I have watched my sweet girl show more determination and perseverance than many adults I know. As Sophie turns 5, we still face discouragement, bad news, fears, but we have also seen our beautiful butterfly emerging from her chrysalis. It has been breathtaking watching our sweet butterfly emerge and show the world her beautiful colors this year.

It’s been about a year since Sophie finally began using words to communicate her wants and needs. I can still remember so clearly those first few words she spoke in the early days of last fall. I remember every day the activities we did were made into speech therapy. I remember putting together puzzles and practicing SO hard for the simplest of sounds. And I remember success. I remember so clearly taking walks in the evening as a family, working so hard on her sounds.I remember the first time she uttered a two syllable word with a changing sound — “Micah.” So sweet. We practiced that night after night walking around the neighborhood with the kids in the stroller. It’s hard to wrap my mind around the reality that she spoke that word, “Micah,” last October, and now she’s speaking in full sentences! I am so proud of all the progress that Sophie has made in this last year. It is truly miraculous in my eyes, and I am so thankful that her journey with apraxia has been so different than I imagined. God has been good to my girl, once again.

I realize how quickly time is passing, how fast she is growing. And I want to remember these sweet days, the things she likes to tell me now that she has the words to do so. I wish I could capture these things in exactly the way that she says them, because it’s so precious. Like basket is ‘bakset,” and want is “nant” and some of her ee’s and oo’s slide into aa’s — like “I’m saa funnaay!” like an old Italian man. Pull ups are “pup-ups” and spaghetti is “skabetti,” Animals are “amisals” elephants are “ephanants.”
She loves to tell me “I don’t nant to!” and “I need hep!” or “PEEEEEEASE!” when she really wants something. Recently she’s also started saying “I nant to do dit all by maself” which is really actually sweet to hear after so many years of dependence.

When I ask her how school was, she tells me, “Good. I payed [played] at the sensaddy [sensory] table and the block adeeda [area].” Or, “I payed wiff ma fiends [my friends].” Or, “I ike Misses Pool.”

To her brother she says, “I nant a turn peease,” or yells, “MIIIIICAAAAH!” when she’s mad at him for stealing her toy. And in the good moments, she reminds him, “It’s ok. It’s ok. Jesus uvs you.”

She runs into the kitchen when I’m cooking and says, “Hey Mom, watcha makin for dinna?” And when I answer her, she responds, “It’s gonna be so nummaay! I’m gonna eat it all up!”

Most of all I love to hear, “I uv you so much Mom. I nant a hug and a kiss.”
These are my sweet memories of my four year old Sophie, growing so fast she’ll soon be five. I can hardly believe it. There will always be difficult days, days where the differences get the better of me, and the sadness creeps in. But when I step back and gain perspective, when I take it one day at a time, I know these days are precious and I treasure them in my heart.

We have two new speech therapists this fall, one at school, and one through our private agency. When I learned that we would be moving to new therapists, I wasn’t overjoyed, because transitions can be challenging and they can use up valuable time in which we could be breezing forward with someone that we don’t have to get used to. However, it has turned out to be more than fine. Sophie has been seen by new sets of eyes who never experienced “silent Sophie.” Our private therapist in particular finds it difficult to comprehend, I think, that Sophie was pretty much nonverbal one calendar year ago. Of course she’s read the initial evaluations and reports, the first sets of goals, the therapy notes. She sees the documentation in front of her, but when she looks at Sophie today, just a little over a year past her original apraxia diagnosis, she doesn’t really see apraxia anymore.

When I shared this with my mom, she asked, “Does apraxia usually resolve that quickly?” No. No it does not. Apraxia is a years long journey for most children who are diagnosed with it.

Because of our new therapist’s questions, I’ve reflected a lot on Sophie’s speech development over the past year. She definitely DID show some major indicators for apraxia last summer when she was diagnosed. She could not produce any intentional sounds. She certainly couldn’t sequence sounds. Her receptive language was leaps and bounds beyond her expressive language abilities. There’s no denying its presence at that time. But now, she really shows very few signs of apraxia anymore.

Children with apraxia struggle a great deal with sequencing sounds. They can repeat the syllables “po” “ta” and “to” but to say the word “potato” causes a great deal of difficulty. Sophie has no trouble with this word, or with magazine, restaurant, octopus, and many other multiple syllable words. Really the only remnant of apraxia that we can see is that she is still unable to plan certain motor movements, such as sticking her tongue out, clenching her jaw shut, making her lips move in more complicated ways (think, fish face), and moving her tongue up and down or side to side. Those are motor planning issues. And they do affect the clarity of Sophie’s speech to some degree.

According to our new therapist, Sophie’s current speech issues most closely resemble a condition called dysarthria, which is a speech disorder associated with brain injury, stroke, and more serious disabilities such as cerebral palsy, Huntington’s, Lou Gehrig’s disease, muscular dystrophy, MS, parkinson’s, etc. Fortunately, Sophie has had multiple MRIs, among other tests, and so we feel confident that she does not have any of these disorders, nor dysarthria itself. Her therapist also specified that she would not diagnose Sophie with this disorder, but that her issues resembled it. She actually feels that most of Sophie’s current issues are connected to her hypotonia (low muscle tone). There are 8 muscles in the tongue alone, and coordinating those muscles when they are low in tone will require extra effort, not to mention the other facial muscles, and muscles of the upper torso that work to form our speech. So we have a fresh take on Sophie’s speech problems and new ideas for how to help her progress.

I’ve been left wondering many things. Has Sophie’s muscle tone been the issue all along? Was she misdiagnosed? Or has her apraxia resolved at a miraculous rate? These are questions that we may never really be able to answer. And if you know me, you know that I’m not really too concerned about answers. I’m just so pleased that Sophie is doing so well with her speech. In my heart I just believe that whatever Sophie’s speech disorder was or is, God has been so good to her and to us in the lightening speed at which she has developed speech in this past year. We remain thankful and ever aware of his goodness to us.

While Sophie is on summer break from preschool, we’ve been working on potty training. I’m realizing it’s as much a training for me as it is for her. I think she’s going to be one of those kids who always needs accountability for a while. With the start of school closing in, I’ve been much one diligent in my efforts. So, we have this sticker chart, because Sophie loves sticker charts, and we needed a way to moderate the number of prizes she could get. Let’s just say, our past efforts at potty training have gotten too pricey. So, when she gets 10 stickers, she gets to go to the Dollar Tree and pick out a prize.

Today we reached the 10th sticker, and she was elated to go and get her prize. Some visits to the Dollar Tree take an eternity because she cannot decide which trinket she wants to bring home. Today’s visit was very prompt. We walked in, and she spotted a little plastic tea set and said, “This is it. Let’s go pay.” And so we did.

She didn’t want to wait in line and tried to force her way in to the belt with all of her 36 inches and 35 pounds of strength. Fortunately, the man ahead of us was a kind grandfatherly sort of fellow. He cheerfully said to my little line ditcher, “Hello, how are you? What’s that you’ve got there?”

Sophie answered (to my great surprise because she rarely dares to speak to people she doesn’t know well, out of anxiety, or because she is ignoring them), “It’s a tea set!”

He matched her enthusiasm, “A tea set?! That’s wonderful!”

“It’s wonderful!” She replied.

He then turned to me and asked, “How old is she? One and a half?”

One and a half? She’s 35 pounds! At first I really wanted to be upset. But, I have prepared for these moments and promised myself that I would be gracious towards others. So, I replied, “No, she’s four. She’s on the small side, I guess.”

Without missing a beat, he said, “Oh! Yes, well, I was going based off of her speech.”

Again, I had the opportunity to be upset and hurt. Because I know how much progress we’ve made in a year. But, I promised that I would be gracious, and now I had an opportunity.

“Well, she actually has a speech disorder. One year ago she was not able to say one single word. So she’s made a lot of progress this year, and we’re really proud of her.”

His response blew me away: “Oh! Well, praise the Lord!”

“Yes,” I agreed, “that’s what we do.”

“What’s her name?” He asked me as he prepared to leave the line for the door.

“Sophie,” I answered.

“Sophie, it was nice to meet you,” he said with a wave.

“Tell the nice man to have a good day,” I instructed Sophie.

“Have a good day!” She beamed.

God orchestrated an opportunity for me today, while I’m up to my eyeballs canning green beans, to go to the store and meet this man. Some people wonder why bad things happen, like a speech disorder, a disability, an illness. But I don’t wonder. I know. It’s for moments like this where I can share our story so that a perfect stranger has a chance to glorify God with us.

You can watch a video of Sophie enjoying her tea set which will always remind me of this beautiful encounter: sophie_tea_video2

Last week we visited our geneticist to follow up after Sophie’s first round of genetic testing. The testing for Weidmann-Steiner Syndrome returned normal with no defect on the particular gene for that disorder. This was great news! Weidmann-Steiner can have other potentially serious heart defects, so we are relieved not to need to consider that in the future.

However, that left us with no new direction to consider for Sophie. So, our geneticist decided to present Sophie to the entire team of genetics doctors at the hospital to see if any of them had any ideas. This week I received a call that someone on the team suggested Coffin-Siris Syndrome, and our geneticist would like to test for it. This syndrome involves mutation of a different gene than Weidmann-Steiner (we have 23,000 genes in our bodies, making this search literally like a needle in a haystack). Like any other syndrome, it can have a profound affect or a mild affect on the child’s health and development. In addition to differing physical features (some of which Sophie may have and some she does not), speech delays, mild to profound intellectual disability, and low muscle tone, it can also indicate kidney problems. That fact alone makes it worth testing for.

We’re not on some hell-bent quest for answers. We’re not looking for a named syndrome to suddenly make it all better. But we are trying to be wise about Sophie’s future. If there is a genetic mutation, it is possible that internal organ systems can be affected, and that is something to be aware of and prepared for. So our search will continue. God bless BCMH for their financial assistance.

I confess that conversations like these with special doctors always make my heart bleed a little bit. I don’t like the scrutiny that my beautiful girl comes under (even with doctors who have the best of intentions) for her physical features, which I feel are just perfect. It’s hard to consider the possibilities that the future holds. It’s hard to talk about the areas where she is lacking. It feels unfair… because we are all lacking in some way… so why are her ways so important to look at under the microscope? I tell myself all the time when I catch myself thinking I just want a “normal” life for Sophie, what IS normal anyways? Which one of us is perfect without anything “abnormal” in our lives? I tell myself, she will grow up just fine. I want to believe that. With all my heart I do. But sometimes heart is just not enough and doubts creep in.

But faith…  faith is enough. And I hold on fast to these words: “‘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.'” Andrew and I chose this verse as the text for the sermon at our wedding, along with another well-known passage: “Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.” So sweet how these verses have stood with us through so many trials over the 14 years that we’ve been together, a constant reminder that God is directing our steps with all goodness and love. With every difficulty we encounter, he meets us with grace, strength, and truth to carry us through.

We really appreciate continued prayers for wisdom on the part of Sophie’s doctors and for her continued growth and development. If anyone feels led to pray about potty training, I will share my mansion with you when we get to heaven.

There’s something overwhelming in looking to a future that is dark with uncertainty and question marks. We move through life with such an unrealistic sense of certainty in what’s next. We have a plan. We imagine what the next days, months, years may hold. We think we know. But there are moments, times, events in our lives where we realize with keen certainty that we do not know. Truly we don’t ever know what is coming down our path. But we think we know.

When Andrew and I got married almost 9 years ago, we thought we knew. We had a plan. When Sophie was born, we thought we knew. The future, ever uncertain, was envisioned with certainty. But when Sophie was four months old, she was diagnosed with an unspecified developmental delay, and that future we saw with such clarity was darkened into obscurity. Her future was uncertain, literally.

And God asked me to trust him. To place her in his hands. To put her future, our future, into his loving care. To accept, to embrace his plan. Four years later this month of June, I can say, he is fully worthy of our trust. He has got it. If we step forward into that uncertain, obscured place, we will find abundant blessing. In this journey of four years, I have found him to be entirely trustworthy. Entirely.

There’s a story that I love of one of the kings of Judah, Jehoshaphat, found in 2 Chronicles 20. Jehoshaphat learns that a vast and powerful army is preparing to attack his land. When he hears the news, the story says, “Alarmed, Jehoshaphat resolved to inquire of the Lord.” Jehoshaphat was surely alarmed to hear this news. We’ve all felt that moment of panic rising up in our chest, or that sinking feeling, the sting of tears in our eyes, the fear in our hearts, anxiety threatening to take over. That’s alarm. But, the very next action listed in Jehoshaphat’s story is “resolved” — “Jehoshaphat resolved to inquire of the Lord.” To resolve is to make a level headed, firm, unwavering decision. For me, it’s not usually the action that follows alarm. Usually alarm is followed by all those things I described above — fear, anxiety, tears, maybe anger, etc. But not Jehoshaphat. He feels the weight of the bad news, he feels the alarm, and then he chooses to bring the matter before the Lord.

One of the first things that Jehoshaphat does in his prayer to the Lord is to remind himself of who God is. He reminds himself that he serves the God who rules in heaven, who has all power and might, whom no one can stand against, who has aided his people at every turn in history and performed many miracles. I love that Jehoshaphat takes these moments to focus on who God is, because I think that this choice restores perspective.

We are so quick to turn our eyes to our circumstances, but then our circumstances feel bigger and bigger. What we need to do is turn our eyes to God and find that he will be bigger and bigger, while our circumstances will grow smaller. Perspective is a valuable thing. In focusing on God, we can restore our lost perspective when the question marks come.

The final statements of Jehoshaphat’s prayer mirror my own decision four years ago when we learned that Sophie could potentially have serious medical problems: “We will stand in your presence … and cry out to you in our distress… We do not know what to do, but our eyes are upon you.” Jehoshaphat chooses a position of standing, his confidence evident in his choice. He is not undone and weakened by the bad news he has just received. I wish I could say I never crumpled under the weight of our bad news, but that would be a lie. I know that I did. But, after I laid there awhile in my “alarm,” I finally found the courage to say “I do not know what to do, Lord, but my eyes are on you.” It came down to a choice really: fear or faith. Fear the question marks, or have faith that he had a good plan. My emotions wanted to run wild in those early days of Sophie’s diagnosis. But my mind and my soul resolved to trust the Lord. And so I made my choice. And I have never regretted it.

I cannot even begin to list the ways that we’ve been blessed on our journey with Sophie. Yes, there has been fear, anger, resistance, certainly. Acceptance has been a process. It always is. But what I want you to hear most in Sophie’s story right now, four years later, is that he is trustworthy. No matter how many question marks, how darkened your vision, how sharp the bend in the path of life, I say this: he is certainly trustworthy. He is more than able. If you resolve to trust him, to stand before him and cry out for help, to fix your eyes on him, he will be faithful and good. You will see it along the journey, and you will see it in breathtaking clarity as you look back from years down the road.

Choose faith. Move forward in faith. There’s nothing dark about the plan from his vantage point. It is the best plan. Believe it. Choose it. Walk in it, resolved, not alarmed.

**I’m including a link to a song that still brings me to tears, that helped me resolve to trust some four years back. Have a listen: Nichole Nordeman — “Someday” https://www.youtube.com/watch?v=bVx9FUQvpXw