Monthly Archives: June 2016

Sophie’s Story: Four Years into our Journey

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 sophie_4mo_cherriesthe 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.

sophie_mommy_4moAnd 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.

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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.

sophie purse

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

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Sophie’s Story: Reflecting on our Year

I’ve had quite a few people ask me lately how Sophie is doing at preschool, if she will go to kindergarten on time, if she will attend a regular school, etc, so I thought an update on her progress might be helpful to those who love Sophie and pray for her faithfully. We so appreciate each of you and we never underestimate the power that your prayers have had and continue to have in Sophie’s life.

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Sophie’s first day of preschool, 2015

When Sophie began the school year in fall of 2015, about 9 months ago, she was just beginning to make some sounds and say very simple words (ma, up, go, ice, bye). She used many, many signs, and so we had some indication that she understood quite a bit, but we were unsure before she began to verbalize where exactly her cognitive abilities lie. As the year has unfolded and her verbal skills have progressed, we have been delighted in discovering the wealth of knowledge that was trapped inside her head.

  • We discovered that Sophie can count to 20.
  • We learned that Sophie can recognize almost all of the letters of the alphabet, most of the time, in any order presented.
  • We found that Sophie knows every animal, even the weird ones, and all the noises that they make.
  • We thought before but had confirmed for us that she knew all of her colors and shapes, as well.
  • Most recently, in constructing Teacher Appreciation cards and Mother’s Day cards, we have learned that Sophie knows how to spell her name and can write it with hand-over-hand assistance.
  • Sophie knows a lot of songs, though she cannot truly sing them yet.

So, having just turned four years old, Sophie has met some of her kindergarten benchmarks already! She has another year of preschool to complete before she would even be eligible for kindergarten, so I have little doubt in my mind that she will be ready to go when she’s five (although we will still have the option to do an additional year of preschool if we want to give her more time). I can hardly conceive of it. A year ago she was not speaking at all. In just 8 months, she went from the simplest of words to speaking in short sentences. It is truly astounding! In addition, at a mid-year developmental assessment, Sophie scored just below average for her age range, rather than being categorized as developmentally delayed, which she has been since four months of age. We are overjoyed to have finally shed that label and are continuing to work towards developmentally average and beyond!

Sophie will still require speech therapy for quite some time yet. Her apraxia is still at play in the extra difficulty that she has in formulating certain sounds which she should be able to form and in using the correct sound in the correct place. She’s got tons of sounds now, but her mind struggles to plan the right sound at the right time, which means that her speech is often difficult to understand. Our current goal with speech therapy is to increase her precision with vowel sounds so that she is more intelligible to those she speaks with. We probably understand about 80-90% of what she says. I imagine that outsiders would probably get about 25-30%.

Sophie spent three and a half of her four years and three months in silence, so it’s not at all odd to me that she is still learning about what to say when or how to act in certain social settings. She’s making a lot of progress there, beginning to learn what to say when, and I hope that as her speech improves and she learns social cues for sophie_bffsspeech, her social awareness will increase. In spite of her social differences, Sophie experienced beautiful acceptance a classroom full of sweet friends and two BFFs (pictured: Evelyn & Collins) on top of that. God truly blessed Sophie with caring friends and nurturing teachers. Even another child in her class who routinely struggled with behavioral issues consistently showed compassion to Sophie. Her teacher told me at our spring conference that Sophie was by far the most popular child in her class! This is totally amazing to me! Not because I don’t find Sophie wonderful, but because as adults, we are so focused on interacting with those who have something to give us in return. Seeing Sophie interact with her friends at preschool reminds me that friendship is not about what I can get out of it or what someone else can give me. It’s just about giving to others that you enjoy being with.

On the medical front, Sophie’s genetic testing for Weidmann-Steiner Syndrome has just been completed. Her test revealed that particular gene was normal! I was overjoyed to hear these results! So many happy tears! Thank you, Jesus! We return to the geneticist in July to see what our next steps may be. This test was run on just one gene, so choosing another gene to look at is, as you may imagine, like looking for a needle in a haystack. We may be at a dead end for now, which is totally fine because Sophie is doing so well. We don’t NEED to find an answer because she’s not deteriorating or failing to progress. So that’s very GOOD. It’s likely that somewhere in one of her many genes there is a minor deletion, duplication, or sequencing error, but this occurs in many individuals. It would account for the differences we have experienced thus far in Sophie’s development, but it may not be a named syndrome, and we may never know which particular portion of a certain gene is affected. As long as she’s doing well, it’s really NOT a big deal to know the specific gene and if it is a named syndrome.

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Last day of preschool

As I reflect on this school year, I’m simply overwhelmed by how much progress Sophie has made. Every small step feels miraculous and wonderful! I am so thankful that in a year full of other kinds of difficulty for myself personally, God has encouraged my heart so much through Sophie’s progress. He has been faithful time and again. I know that he is enabling her awesome progress and blessing her with favor in addition. He has been so very good to our sweet Sophie girl! And I know he will continue to be. To think that when she was four months old, we had to question if she would live to see four years old… Now here we are with a developmentally “slightly below average” chatter box, romping around, loving life. So very good. Thanks, God.

 

 

 

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