Monthly Archives: October 2015

The Brokenness and the Beauty of Autumn

While driving through the countryside to church on Sunday, I admired the fall colors and thought to myself, there’s beauty, even in death. Reality is the leaves are dying; they are aging, and they are wasting away; the end, for them, is near. Yet they are stunning.

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We’ve had a particularly glorious array of color in our fall leaves recently this month. It has been breathtaking against the beauty of a clear blue sky. These leaves are teaching me lessons.

On our family walk one night this week, I said of the fall colors, “Nobody paints like God does. No matter how we try to recreate his handiwork, we just can’t do it.” No paintings measure up, though beautiful. No colors of clothing can compare. No beauty compares to that which God creates.

In my mind, these thoughts of the beautiful fall colors join together to form one truth: As the leaves, we are wasting away, but God is doing something tremendously beautiful with our lives. The truth is that all of us are wasting away in our physical bodies. Yet, God is painting something so beautiful in each of us. Our time here, no matter how “long” it may seem, is, as the Bible tells us, but a breath. We are, like the leaves, near the end. But there is still so much beauty that we can display even with our broken lives.

mom_and_dadI find this particularly true for some of the aging folks in my own life: You are stunning. God is doing beautiful things, even as your roles change, your life slows. Some of the most beautiful people I know are entering the final portion of this earthly race. Your beauty is inspiring. Never lose sight of how beautiful your life is.

This truth of beauty in brokenness also reassures me that God is doing beautiful things even though my daughter experiences physical brokenness in more severity than most. Her sweet life is a beautiful thing for all who encounter her. My mom (above) once told me that Sophie, with all she is going through, is surely favored by God. We know that God’s favor doesn’t necessarily appear how we think it might, and so I’d like to think she’s right. I see that God is doing something so beautiful with Sophie’s life, regardless of any brokenness she carries.

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When others see my life, see Sophie’s life, I hope that they are breathless. I hope our lives are a blaze of color which causes others to think, “Nobody paints like God does.” Nobody crafts a life the way he does. In spite of our brokenness, he makes beautiful things out of us.

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Thankfulness (2): Helicaas and Sophie’s Prayer of Thanksgiving

micah_tractorLast week as we enjoyed a walk after lunch in this beautiful fall weather, we talked about something that Sophie is really grappling with right now: The fair is over. If you live in Fairfield county, you probably share her dismay. We do love our fair. She loved everything about the fair — the animals, the big tractors, watching the rides, seeing the high school instrumental bands — she loved it all. I was not anticipating this response because she can easily be overwhelmed by heightened sensory situations. But she has asked me all day every day if we could go back. Now we are trying to help her come to terms with the fact that the fair is over. So, as we walked earlier this week, we talked about thankfulness and contentment. I told her, “It’s better to be thankful for what we got to do and what we do have than to look at what we don’t have anymore or can’t have.”

sophie_tractorWhen life takes hard turns as ours has taken over the past almost four years, it’s good, as I told Sophie, to practice thankfulness. It leads us into contentment rather than discontentment, longing for that which we cannot have. For Sophie, it’s the fair. Hard as it is for her to understand, everybody went home. For me, it’s something bigger. As I wrestle through this WSS prognosis, I’m ever mindful of the many blessings that I do have.

Counting your blessings may be a trite cliche, but boy is it useful in real life. I’m just saying. It is really useful. So, on our walk, we counted our blessings, all the things that we can express thankfulness for in our lives. Micah’s answer was what I expected: “Helicaa” — he’s thankful for helicopters. Yes, of course. Sophie’s answer was just so touching. I listed off some things that we can be thankful for to give her some examples, and then I asked her what she was thankful for. Without hesitation, and with her voice (rare for her to answer that way without prompting), she said “Mama.” I’m thankful for you, too, baby girl, so very thankful.

sophie_fair1My life, my walk of faith, is so much richer for Sophie’s presence. Who would I be without her experiences? I’m reminded of Milton’s notion that we need the bad to see the good — without the former, we would never recognize the latter. Without having been through the joy of the fair, we wouldn’t recognize its absence and long for its return. Without the parenting challenges of reflux, hypotonia, nystagmus, eye surgery, MRIs, apraxia and WSS, those rock hard challenges that we’ve faced thus far, what in turn, would be lacking in my faith, and in my joy, over each success Sophie experiences? So much. Dickinson echoes a similar idea: “Success is counted sweetest by those who ne’er succeed.” Truth is, maybe we need the hard times so that we climb up into those ramparts like Habakkuk to look for God’s words to us, to gain perspective, to see what our blessings truly are. Thankfulness. It’s a good idea.

My heart echoes the prayer of Habakkuk after he hears the word of the Lord to convey His message to the world. His world looks dismal, but he chooses joy; he chooses thankfulness: “Lord, I have heard of your fame; I stand in awe of your deeds, O Lord. … Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful before God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.

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My Own Trip to the Neurologist

sophie_mommy_2I know I’ve written a great deal about Sophie’s various appointments over the years — neurologist, neurosurgeon, ophthalmologist, geneticist, etc. But for the first time I’ve now had my own appointment with one such specialist — the neurologist.

This little Irish man entered my exam room and wowed me with his knowledge of neurology. Very impressive indeed. He listened. He thought. He showed compassion. He explained. He ordered tests. He referred.

He listened to my entire history and asked me many questions about my dizzy spells as he tried to help me pinpoint when this stroke may have happened. The verdict is still out on that one. He did conclude that it was likely a pregnancy related stroke (not sure how to feel about that), either when I was in such poor health at the end with Sophie, or when I experienced my first (and most extreme) vertigo while early in my pregnancy with Micah. My bet is on the latter because it was the very first time I experienced anything like that, and it was extremely bad, though I was also borderline pre-eclamptic with Sophie at the end, so we can’t rule that out either. The stroke, however, was about the size of a pen tip. Very small. Very minor. Even so, he has ordered many blood tests, and an MRA to rule out serious problems that could also have caused the stroke. More tests. Fun, fun.

And he does not conclude, interestingly, in spite of the unifying diagnosis theory, that the stroke explains my symptoms. The timeline, we have all concluded, just doesn’t fit. My dizziness that began in September has been completely different from all that I experienced beforehand. In previous episodes of vertigo, my wold spun, I felt nauseated, I had to lay down. This most recent issue with dizziness leaves me feeling more like a drunkard, stumbling around, feeling like I’m trying to walk on a boat out to sea. NOT a cool feeling to live your life with. This, in conjunction with my hearing loss and crackling sounds in my ear, led the neurologist to conclude that I may have a problem with my inner ear. Hence the referral to ENT (Ear, Nose, Throat).

My doctor actually said to me, “If you were my sister, this is the doctor that I would want you to see.” I was very impressed with the compassion in these words. To this doctor, I felt like a person, not just a weird case, a mystery to be solved. My neurologist has personal experience as a patient of this ENT and claims his excellence, can pull strings to get me in soon, and has his own hearing because of the handiwork of this physician. So, I will see this amazing ENT sometime in the near future.

In the meantime, I will undergo all my tests, and I will begin a type of physical therapy which he says has “high efficacy” with vertigo sufferers. (I learned that whether your world is spinning or you feel like you are moving, off balance, etc, it is all classified as vertigo.) My hope is that the tests will reveal no serious issues, that the PT will help me continue to overcome my dizzy spells, and that the ENT will have further wisdom for me. I will also follow up with the neurologist in four weeks.

As for how I’m feeling, my dizziness continues to decrease. Praise Jesus! I am to the point now where most days I feel pretty normal. Occasionally, I will have mild moments where I feel dizzy, but they do not turn into full blow dizzy episodes. I am still being careful to avoid my triggers, but I find that many of them no longer trigger dizziness.
*I CAN once again walk and push the stroller
*I CAN get down on the floor with my kids, even in the mornings
*I CAN turn back and forth quickly (as when going from the fridge to the stove to the sink, etc)
*I was ABLE to RUN down the hill with my kids at the park this past week, which is an awesome blessing! (Slopes, stairs, and uneven footing have and still do cause some trouble for me.)

In addition, I threw caution to the wind last night at our church chili cook off because I desperately wanted to take Sophie on her first hayride. I admit, I did not feel awesome while on the hayride or thereafter, but the effects were so much less than I anticipated! Plus, Sophie keeps asking me today if we can go on another hayride and hear Mr. Shane and Mr. Todd sing again. It was well worth any consequential dizziness that I may yet experience!

Thank you Jesus for your healing touch!

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Thankfulness on the Ramparts: Habakkuk and WSS

It’s hard when good things end, isn’t it? Or when life takes an unexpected turn, leaving behind something that was great and wonderful, moving in a direction of uncertainty, doubt, sadness, or pain. Life is full of these kinds of changes. We all have challenges and changes that we are wrestling with. I know I’ve been grappling hard with the possibility of Weidemann-Steiner Syndrome. It’s a lifelong diagnosis. If Sophie is diagnosed with this syndrome, we will forever let go of the idea that Sophie’s going to “grow out of it” or “catch up.” These things may be true still in many ways, but this syndrome is something that she will always carry this side of heaven. That’s heavy. These thoughts, this syndrome, are a force to be reckoned with. I feel a little bit like Habakkuk right now, wrestling it out with God, waiting for what God will say to me.  As I turn to reflect on Habakkuk’s story, I see many familiar notes in my Bible: By his name, the words “God wrestler” and “God hugger.” I know his story of wrestling is one I need to revisit. Maybe my wrestling needs to turn into hugging it out, just like I imagine it did for Habakkuk.

I identify with Habakkuk’s resolution in the beginning of chapter 2: “I will stand at my watch and station myself on the ramparts; I will look to see what he will say to me, and what answer I am to give to this complaint.” rampartsHabakkuk chooses a place of height, the ramparts, where he can see for a great distance, and a place of protection, where he can guard himself. It’s good during these times of trial and waiting to station ourselves in a place where we can gain some perspective, and to guard our hearts as we wait for what God would say to us. I find that nothing restores my perspective like thankfulness. It is an important practice in times of loss and hardship. As I wait in the ramparts, I will choose thankfulness. (More to come on how this is taking shape in our family.)

God immediately answers Habakkuk in the text: “Write down the revelation and make it plain on the tablets so that a herald may run with it. For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay.”

As Habakkuk stands in the ramparts, he hears God’s word, and is instructed to have the herald run with that message. Maybe that’s just what heralds do — they run. I’m not much of a runner myself, but I am familiar with the Hebrews passage that tells each of us to run the race marked out for us. I know that God has a path marked out for me as well. My heart is to be his herald, running with all I have to share the very good news of what God is doing in our lives.

PathEven as I write, I realize that’s his answer: Run. Run your race. Be my herald. Run this race that is before you. Even if you can’t see clearly, wait for it, keep moving forward. I never prove false. WSS is limited by the brokenness of this world, and I know no limits. There’s no room for meandering, or petering, or sitting on the sidelines. It’s time to run.

 

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Love Your Neighbor

“You have heard it said, ‘Love your neighbor and hate your enemy.’ But I tell you: Love your enemies and pray for those who persecute you that you may be sons of your Father in heaven.” (Matt 5:43-45)

old treeMy next door neighbor (to my left) has been less than lovable in the 6 years that we’ve lived in our house. She had this major issue with our trees — silver and sugar maples are soft trees, and they drop a lot of limbs. Before we moved in, our other neighbors (on the right) lost their large sugar maple during a wind storm — it fell across the driveway of the house we now own and crushed the pickup truck sitting in the drive. The owner, fortunately, had just exited his vehicle. So, I can, to some degree, see her concern. Without a trust in our loving Father, she was left to her own devices to protect herself from our trees. So she harassed and harangued us until we had our back tree cut down. You can imagine my horror when a storm was raging outside at 10 pm, and I heard my neighbor screaming like a mad woman, pounding on my door, yelling profanities, all because a small limb grazed her garage roof and took out three shingles. Yeah, it was not a pretty sight. After that, we finally agreed to remove our tree. In hindsight, I can see what she feared might happen with the tree there, but at the time I was deeply wounded by her actions.

Just months later, while I struggled with morning sickness during my first pregnancy, Andrew traveled to China, and I went home to my parents to receive help while he was gone. When I returned, prior to Andrew’s new tree2return, and much to my chagrin, the tree in my front yard had likewise been removed. While we were out of town, she called and harassed the city, called in some favors, and had our tree removed. This was the final nail in the coffin. We avoided her as best we could, we put up a fence to allow ourselves some privacy, bought a new tree, and hunkered down to avoid her angry storms in the future.

This was four years ago this past summer. Four years. I have barely spoken to my neighbor in four years. We did have some confrontations where we voiced our reasons for withdrawing from the relationship with her. I calmly and clearly explained that no amount of anger a person might feel, in my mind, ever justified her actions. People simply shouldn’t treat others in that way no matter what. I was so grieved over the loss of our beautiful hundred year old trees. I blamed her for all of it. (And truly, it is her fault.)

But I have come to see over these four years that she truly needs the love of Jesus like no other. It has taken me a long time to come to the point where I can once again feel compassion for her instead of anger. The anger, thank Jesus, did vanish some time ago, but I still felt the need to maintain a safe distance. I would not consider my feelings of the past towards her anywhere near the camp of compassion.

In recent months our town has begun a “love your neighbor” crusade. My friend even wrote a book about loving your neighbor. The message has been blasted in my face as clearly as anything. And I have still felt resistance. I have not wanted to reach out to this woman. She is my neighbor, but I have not wanted to love her, and I, to my own fault, have resisted doing so.

But, a few weeks ago, she had surgery on her eardrum. She’s alone with her teenage daughter (who I am sure is not super helpful), and I felt moved to do something for her. The song that kept running through my head, the one line that says, “It’s your kindness, Lord, that leads us to repentance.” This is all at a time when the kindness of the Lord is resonating so deeply in my heart (from all the support we have received over Sophie’s need for speech and with my recent health issues). He has been so kind to me. How hard is it for me to be kind to someone else? Well, sometimes very hard. But the urge persisted, and so finally I bit the bullet, summoned my compassion and courage, and took her some muffins and a card. I’m embarrassed to admit that I was somewhat relieved when she didn’t come to the door. But I left my gift on her doorstep.

In the few weeks since I took her that package, I have had more meaningful conversations with my neighbor than I’ve had in four years. It’s been astounding. I never realized the impact that a small kindness of muffins and a card could do for my neighbor. She’s like a dry sponge, soaking in any drop of love that comes her way. I hope that the kindness of the Lord reaches her through our conversations, through my card, the muffins. I hope that in showing kindness to her, she will see the grace of Jesus in my life. Because it’s not about me being the bigger person or doing some great thing or wow, look at what I overcame. No. It’s about the reality that God has shown me so much kindness. I am mandated to give it away.

You see, we were all enemies of God at one point. Yet he loved us. He chose us. He wooed us with his kindness. He is the example of loving your enemy. I must love my enemy because I was the enemy, and he loved me.

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Sophie’s Story: My Choice, It’s Time to Count my Blessings

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Last night and this morning I felt the dark cloud of discouragement, and despair, even, forming within my thoughts. Yesterday was Sophie’s IEP meeting, and while the team supporting and servicing her is totally awesome, it’s tough focusing on all the ways that she’s behind, or different, delayed, or disabled. Just hard. Period. She now has been labeled as a child with multiple areas of disability, receiving services in speech, occupational therapy for fine motor issues, and adaptive PE for gross motor issues. I confess, I thought of the many, many children born to all my friends, and so many of them are normal. On IEP days, I feel anger about that. I’ll admit it. When I’m forced to zero on on Sophie’s differences, when I’m forced to play the dangerous game of comparison, my heart feels troubled. I have to do it every now and then. But at the same time, I know it’s not where God wants me to live. This morning, I prayed, “Dear Father, just help me to be ok with today. That’s all I need to do. I just want to be ok with where we are today.” It’s a prayer I know I’ve prayed many times. I’m struggle, today, to be ok with Sophie’s differences. But I’m fighting to see and hold on to the many blessings that God is showing me in the midst of the struggle. So here they are…

Sophie is blessed to be part of an incredible program at Lancaster City Preschool, and to have a fabulous teacher and aide there. Sophie’s teacher spends a great deal of time working with her and doing those “extras” that all teachers do, for my child. She and her aide are sweet, and nurturing, and so exceptionally kind. Her private speech therapist and public school therapist, her occupational therapist, and her adaptive PE teacher are dynamic, down to earth, and skilled at what they do. She is blessed to be in their care.

Sophie has made friends. As I have struggled with this possible diagnosis for her, with her delays, even over several years, one of my biggest concerns was always how she would do with her peers, and how she would make friends, given her nonverbal status right now, and her differences to be seen down the road. But, she has made friends. Every day those friends greet her at the door of her preschool with smiles, giggles, and hugs. She is eager to see them each day. I absolutely love this, and it touches my heart that God has allowed me to see these friendships, speaking so directly to my own area of concern. Isn’t he good like that?

Better still … When we saw the geneticist, we learned that he has one other child patient in the central Ohio area who has Weidemann-Steiner Syndrom (WSS). Just one in this entire area. Yesterday at my IEP meeting at Sophie’s school, I learned that a child at Sophie’s school has this syndrome. Say, what?! Today, I met her mommy. And I found out that this little girl who has WSS was actually in Sophie’s class last year. I passed her mommy everyday in the halls and parking lot for almost the last year. What a sweet blessing. She is the other child that our geneticist diagnosed. Of all the places in Ohio that she could be, she’s here in Lancaster, at the exact same preschool as my daughter. Only God could do something like that for me. What an immense blessing. There are perhaps thought to be three children in this area who have the syndrome, one a baby, and it just so happens that these other two little girls – Sophie and Kloe – attend the same school. Just so happens. I know my Father sees me. I know he loves my child. I know he loves me.

God faithfully reminded me of the big picture this morning as I listened to some worship music:

“Come out of sadness
From wherever you’ve been
Come broken-hearted
Let rescue begin
Come find your mercy
Oh sinner come kneel
Earth has no sorrow
That heaven can’t heal” (https://www.youtube.com/watch?v=HELQyZNnR-g)

Sophie’s precious soul is eternal. Her life here may have brokenness. All our lives do have some form of brokenness. But in the wold that she was made for, there will be no more tears, no more brokenness. There is always hope. Though this journey may be difficult, I’m choosing to view it as my “light and momentary trials.” It’s not easy, and I’m not sure my heart is 100% there yet. But I’m making my choice: God is good, and he is faithful; he love us, and he sees us; he is always working for our good, even when our hearts feel like they’re breaking.

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Sophie’s Story: Revisiting the Geneticist

How Hairy are Your Elbows?

Hairy Elbow syndrome, they call it. A funny name, perhaps. But if you are the one with the extra elbow hair, it might not be so funny. Sophie has this excess hair, just in the forearm areas around her elbow. Interesting, that a genetic mutation could cause such a specific hair growth. It’s there. So it suggests Weidemann-Steiner syndrome. We will wait many months to learn whether or not this is the name for what our sweet girl carries with her for her time on this earth. It does explain all of her symptoms — nystagums, hypotonia, initial feeding problems, apraxia of speech, small stature, even facial features. It’s all there. Who knew? It’s a very rare syndrome that has only been described since 1989, and was only officially named in 2012, the year Sophie was born. As you can imagine, not a lot is known about this relatively new, rare syndrome, except its defining characteristics, many of which define our sweet girl.

Sophie and Slinky

So what’s the good news? Many have asked me how her appointment went, and I struggled to say, “It was good.” But, in the grand scheme, it actually really was. Some families receive news that the genetic mutation that is likely in their child is life-threatening, seizure inducing, or extremely life-altering. Weidemann-Steiner, from what we can discern, is none of that. Sometimes in severe cases it causes mental retardation, and my teacher’s heart breaks as I think of those students that I watched struggle with learning disabilities over the years. To think of Sophie going through those struggles. But, I refuse to live there. That is many years away for Sophie. I need only to be ok with where we are today. No grace for tomorrow yet, so I’m not going to be living there. And we don’t even know for sure whether or not she has this genetic mutation. But we know it’s a possibility. (We also feel like many of her delays are due in large part to her non-verbal status. It’s hard to learn your ABCs if you can’t sing the song, for example. I pray that things will indeed be very different once her speech catches up a bit.)

Even though some delays remain, the geneticist was very pleased with Sophie’s progress. And he is such a kind man. He enjoyed engaging with Sophie, rather than viewing her just as a case, a mystery to be solved, as some doctors would. We are blessed in the very doctor that God chose for us to see. In addition, this syndrome which he is testing for, as I said, is very rare, yet this doctor has, not one, but, two other patients with this syndrome. In this, I again see the loving hand of the Father, because if this doctor had not experienced this syndrome before, I wonder if he would even have considered it or noticed the characteristics.

Our kind doctor called this a sporadic and random genetic mutation, but I know with even more certainty that God chose this for Sophie, for our family. I cannot question his view of reality. I cannot see what is best for my family or my daughter the way the he can. Whether or not she has this certain syndrome, we have walked a different road with Sophie thus far than most parents will walk with their children, and our walk with her into adulthood will continue to be different. Still, I am convinced it is a road that our Father has lovingly chosen for us. I must believe that he sees what is best, even if I don’t understand it. I’m thankful that this syndrome will not threaten to take our child prematurely from our arms. I’m thankful to have my sweet Sophie girl here with me.

Perhaps by the first of the year we may have a name for this. And that may help us with insurance and with services down the road. But a name changes nothing. Sophie is who God created her to be, a beautiful, caring child, with a smashing testimony for his goodness and favor. We are blessed to be part of her story. We wait to see how it will next unfold. We wait to see what glimpse of God’s glory Sophie will get to present to her world.

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Losing Control

For me, there’s something terrifying about the thought of losing control. We call these folks control freaks, and I’m one of them. I’ve learned to let go of the little things that I can’t control that don’t really matter. Actually, I’ve fought to let go of those things. But there are other things that shake me to the core when I realize how out of my control they are — the future of my children, my beloved spouse, and most recently, my health.

Watching my wold wobble and tilt out of my control has been quite an object lesson for me. I note that not once did I actually fall as my world rocked like a ship. Not once. Ringing true in my shifting world this past month are the words of Hebrews 10:23 “Let us hold unswervingly to the hope we profess, for he who promised is faithful.” He who promised is faithful. And “to him who is able to keep you from falling” while speaking symbolically, was literally true for me this past month  (Jude 1:24). Even as I chased runaway children, I did not fall down. I saw that even though I felt like the world was totally out of my control, but my God was never unable to control my world, even as I spun. Because he who promised is faithful. There are many difficult realities that remain outside of my control. For me, most of them center on those I love most (two of them pictured below) and what the future holds for them.

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But today as I was worshiping, praying for those I love, I heard God’s gentle reminder:

It is good to relinquish those you love to me, because I can do far more with them than you can ever do through all your efforts. It is good to relinquish yourself to me because I can do far more with you than you can ever do with yourself.

Simply put, I thought someone else might need to hear this reminder today. I know I’m not the only control freak out there anxiously trying to do as much as I possibly can to lead my children to Christ. And that’s not World in His Handswrong of me to do, but, God can do far more with my children if I open my hands and give them to him. It’s not wrong for me to do my best with my talents and abilities, but God will do far more with me if I just give myself to him. Even when my world is literally spinning out of my control, it is never outside of his control. There’s freedom in letting go, losing control, to give it to the One who ultimately controls it all in his goodness.

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