Signs of Life

Around here I’m looking for signs of growth both outside and under our roof as I watch our son and try to get a read on him. In some ways I know everything about him, in other ways I’m so in the dark!

My privilege is to love him, care for him, help him, push him forward, and with that the difficulty of the necessary evaluating and wondering. How often do we say things about our babies’ future like, “Just wait till he’s crawling!” or “He’s going to be a handful when he’s older!” or “In a couple years she’ll be talking your ears off!” We can say things like that and it’s completely appropriate. Being experts on our kids is part of the gig, which is part of what’s hard to bear about this. It’s not knowing if he’ll be here in ten years, or what he’ll be like if he is here in ten years. It’s not being able to answer the questions about him, because I just don’t know, and as his mom, I want to know. I’m learning a whole new kind of parenting, the kind that doesn’t assume anything about the future and yet is fully invested in its possibilities. I’ve got a long way to go.

Day by day and sometimes hour by hour I’m asking God to help me know the hope to which He has called me. I want to be so full of that hope, the hope that I have because of Jesus’ resurrection from the dead. Maybe you will ask God to make this hope known to you as well. There are so many people who are deep in grief and suffering. Or deep in sin. The only balm for grief is the resurrection balm and the only cure for sin is the resurrection cure. Here’s Paul’s prayer:

“that the God of our Lord Jesus Christ, the Father of glory, may give you the Spirit of wisdom and of revelation in the knowledge of him, having the eyes of your hearts enlightened, that you may know what is the hope to which he has called you, what are the riches of his glorious inheritance in the saints, and what is the immeasurable greatness of his power toward us who believe, according to the working of his great might that he worked in Christ when he raised him from the dead and seated him at his right hand in the heavenly places, far above all rule and authority and power and dominion, and above every name that is named, not only in this age but also in the one to come. And he put all things under his feet and gave him as head over all things to the church, which is his body, the fullness of him who fills all in all.” (Ephesians 1:17-23 ESV)

May our hope be in the immeasurable greatness of his power and his great might that raised Jesus from the dead and can forgive our sins and make us alive, forever. Sunday’s on its way.

Running water

Running water

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The Hostas Underneath the Snow

Spring matters more than ever at our house, because the resurrection matters more than ever.

Lewis calls spring the “waiting room of the world,” a “nothing time.” I have felt begrudgingly similar toward my least favorite season. I’d take the known cold of winter over being jerked around by the seemingly false promises of spring. I love warmth and buds, but every year I find myself in a malaise of disappointment, wondering if it will actually come round.

Yet, spring is reminding me that God does keep his promises. Even when it’s April and a snowstorm. Or, May and a snowstorm. Even when it seems like death wins. I must not mistake the hints of God’s goodness and promise-keeping that are all around in the thaw/freeze/thaw/freeze cycle of spring, for the taunts of the enemy, who’s hoping I don’t notice the hostas underneath the snow.

Think of Jesus and the thaw/freeze cycle of his final week. Triumphal entry=thaw. Cleansing the temple=freeze. Lament over Jerusalem=freeze. Teaching and explaining parables=thaw. Plotting of Pharisees=freeze. Last supper=thaw. Gethsemane=freeze. Questioned by Pilate/Herod=freeze. Release offered by Pilate=thaw. Crucifixion=freeze. Resurrection=thaw. Humanly this is difficult to grasp in the moment, but this is all one massive thaw, just like spring. It seems back and forth, but it’s really the trajectory of resurrection, and the freezing is necessary for the ultimate thaw.

Winter is the setting and the stage for redemption. It is the stark backdrop to the glories that are coming.  And for those who have gone deep into that winter, those for whom winter has been the bleakest and coldest, who have refused to take the road of bitterness and have thrown themselves on the grace of God, perhaps the glories will be all the brighter.

We bid farewell to winter as the big melt was underway on Saturday. Tom took the kids for the last sledding trip down the hill.

four kids, a dad and a sled.

four kids, a dad and a sled.

Whoops, falling off.

Whoops, falling off.

All set!

All set!

And they're off!

And they’re off!

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Goodbye winter.

Goodbye winter.

 

An Update, FAQ, and Prayer Requests

The months keep on and Titus has been in our arms for a full 7 plus ten days.

It’s hard to find words for how grateful we are to have him.  It’s frustrating for me because I love words, shadows of the Word, and it seems lazy to just shrug off finding the right ones. But, I’m often going blank on words these days and thankfully the Spirit knows just what to do in times like these. I also think that’s why people turn to poetry. Poetry allows us to speak more potently about our pain or joy. It’s like prose on steroids.

I get asked a lot about Titus, so I thought I’d try and answer the more frequent questions a little more fully here. But please feel free to keep asking in person! It blesses me. I’ve hesitated to write in detail about all of this publicly. I think it’s just another level of acknowledgment that I’ve been slow to take. But, here goes. First a pic!

pic by Elianna. One of the few with Titus and me.

pic by Elianna. One of the few with Titus and me.

1) “How’s Titus doing?”

I think I could answer this three ways and all are true but incomplete. First, he’s well. He had pneumonia a while back, but he’s been in good health for at least a month now. Also he’s growing and beautiful. And he’s progressing in the right direction. He can roll over, he can sit with support in a reclining high chair, he can grab toys and he has 4 teeth. The second way to answer this would be to say, I don’t really know how he’s doing. We still don’t have a diagnosis and I still don’t know what to expect from him. Thirdly, I could say, he’s delayed. He’s not where a 7 m old would normally be. He tested at or below the 1st percentile for most of his developmental testing. Usually I just say, “He’s doing well. He’s progressing and he’s healthy,” because it’s true and there isn’t time for the rest.

2) “What does Titus have again?”

I think people ask this because they know that there’s something potentially serious going on with him, and they assume they forgot what it is. But really, we just don’t know and have never known what his diagnosis is. There is a serious and fatal condition that we are trying to discover if he has. It is called Pontocerebellar Hypoplasia (PCH). It is a degenerative brain condition that affects the pons (part of the brain stem) and the cerebellum. We know via MRI that Titus has a hypoplastic (small) pons. They also were concerned that his cerebellum could be thinning, but didn’t see enough to say whether it is or isn’t.

It will likely be a year or two before we can rule out PCH, which would be ruled out by his good health and continued development. Yes, this is a long haul. I asked the dr. what his diagnosis would be if he doesn’t have PCH and the answer was that he wouldn’t have a specific diagnosis, just descriptive words to show the findings like, congenital hypotonia (low muscle tone) and hypoplastic pons and delayed myelination patterns (the wiring of the brain is delayed) and congenital esotropia (crossed eyes, which have now been helped quite a bit by surgery).

It’s hard to tell people that we don’t know and won’t know for a long time. No one can live in crisis mode for that long. So, I try to set aside the crisis and live day by day. But it is always there and it does creep up in varying degrees. It’s hard to ask people to walk this long road with us. It feels like a huge imposition, a black hole of neediness, but God knows and he is sufficient for this.

3) “So what are the next steps?”

When Titus is a year and three months (one year after his first MRI which he had at three months), he will have a repeat MRI to see what’s happening in his brain and compare it to the first one. The hope is that nothing is shrinking or thinning. MY hope is more than that, that his pons will have actually grown. Also, he’s in weekly therapy to help strengthen his muscles and maximize his progression. He sees his doctors regularly to monitor his progress and eyes.

We are also waiting on genetic testing, which is complicated and may not happen. It has to be pre approved by our insurance and has been rejected twice based on the scope of the tests. Our doctor is trying again, submitting one test at a time. We will see. I am in no rush here as the only news we could get from the tests is bad news. They are not able to rule out PCH with the tests.

4) “He’s progressing in the right direction, so that’s good, right?”

Yes! It is. But it also doesn’t tell us a whole lot in regard to whether he has PCH or not. Our doctor said that if Titus has PCH he would expect him to progress for while, no one could say for how long, then at some point in early childhood he would plateau and decline. Obviously, I don’t even like thinking about that and mainly just want to be happy for heading in the right direction. But, he does ask me to keep an eye out for him to plateau. I hate that.

5) “How are you doing?”

This is a question for me, not Titus, but I’ll address it anyway. It is a kind question, yet hard to answer in under an hour, and even if given an hour, I probably will not make much sense because the question is so broad I can’t figure out how to key in on anything significant. I just start to feel a bunch of stuff and can’t put words to it. I think people want to know that we’re OK. And we are. The Lord is taking care of us, which is usually what I try to say. I don’t mind answering it with a kind of “stock” answer, because it’s true, and it’s much easier than trying to form coherent sentences from the mass of emotions just under the surface. But if you want to know more than the stock answer, asking something pointed, like, “How are feeling about the genetic testing being rejected?” Or, “What’s it like to care for Titus?” Or, “Are you anxious about…” Or, “How has the Lord ministered to you regarding…” Questions like that give me a starting place, something specific to work from.

Also, it’s hard to know whether someone wants the (completely true) stock answer or a longer, deeper one that reveals more pain. So, there have been times when I’ve started in on something longer, only to realize I was talking to someone who was 5 min late for something. And the reverse has been true as well, where I’ve quickly given my stock answer only to stand around and realize they were hoping for more. This is just real life and no one’s fault and we’ll all have to bear with each other in these moments with the grace God supplies. Also, no one should feel guilty for only have time for the short version. There is something very glorious about being able to say, “The Lord is taking care of us,” and nothing else. We haven’t earned it, He’s really just carrying us and it’s good to say that to people.

Hopefully giving this update will help give direction to any of you who are praying for Titus and us. But here’s a list anyway.

1) Pray for Titus to continue to grow and develop and for his brain to grow!

2) Pray for us to be quick studies in helping him in therapy and loving him in every way we can.

3) Pray for our family to lean in to Jesus and His Word and His body during this time. There is a temptation to withdraw that I want to resist and I need God’s help to do it.

4) Pray for our other children to know God through this.

5) Pray that we would befriend faithfulness in our parenting and that physical and emotional fatigue would not lead to selfishness but be overcome by love through Jesus.

6) Pray that our anchor in Jesus would hold in the uncertainty and that it would hold if we face the worst and that it would hold if we face long-term disability.

7) Pray for sleep. We aren’t getting a lot.

So, that’s a lot to pray for and I don’t expect most people to work through the whole list, but maybe one will resonate with you and the Lord will lead you to pray for that. I’ll leave you with our sweet boy, with pillars of sibling love on either side. His life is blessed.

sibling pillars

sibling pillars

Dedicated to God

On Sunday, February 23rd, we dedicated Titus to God, in front of, and with, the body of Christ gathered at Bethlehem Baptist Church.

These are the words of dedication spoken by our pastor over Titus:

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“Titus James, together with your parents who love you dearly,

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and this people who care about the outcome of your faith,

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I now dedicate you to God,

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surrendering together with them all worldly claim upon your life,

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in the hope that you will belong wholly to Jesus Christ, forever.”

Prayer of blessing

Prayer of blessing

This was a precious time for us, mainly because of the presence of the body of believers gathered together to witness our resolve and to commit with us to care for Titus. At times like these, I’m reminded how much we need each other to walk through this life’s pain and joy. I’m also reminded to invest in the lives of those around me, to remember my commitment to care about the outcomes of their faith.

I’m grateful for the people of God who love our boy and care about his eternal soul.

I wrote a poem to commemorate the dedication, with one of the meanings of Titus’s name in mind, which is “saved.” It also means, “pleasing,” which couldn’t fit him more.

“Saved”

Boldly asking, “One more son.”
Lord, if you would see it done.”
Waiting, longing, letting go,
Wondering, is the answer no?

Quietly watching, will good news hold?
Will this speck of life join our fold?
Happy, humbled, brimming joy,
And could it be? Yes. It’s a boy.

Fears emerging, questions form,
Could sorrow touch our hearts, now warm
With love, and clutching onto hope,
Which is our breath, our nerve, our rope.

Simply trusting, unknown paths,
With rough terrain and jagged halves
Of stones that seek our stumbling.
Yet, see Him there: our Life, our King.

Fully yielding, our son is Yours,
Even if You make the rain to pour
And only valleys be in sight,
Still we hold, “In Him is light.”

Now requesting, may Titus’ life
Be vibrant, Spirited, lacking strife.
May Jesus stoop and thus engrave
Titus’ name on palms and utter, “Saved.”

Because What’s a Poem Between Friends?

“Look Up”

O Soul, Sorrowed Soul,
Look up to Him that treads the way,
Look up to Him who will not stay
Far off, but in the night will pay
The debt you owe and use your pain. Pray,
And He will once again make day
To glow on horizon’s bend and
Grant the peace the serves to mend,
To calm, contend and keep at bay
The fears that foment. Yet they will lay
Down and bow to Him who thunders, “Still.”
And wills the miracle: trust, obey,
With surety, glad-faced, without dismay.

O Soul, Weary Soul,
Look up to Him who knows your frame,
Look up to Him who makes His name
To be a balm for wrung-out shame-
Filled mothers, wondering if His claim
On them will hold at story’s end, again reclaimed!
We’ve heard it said, “He isn’t tame.”
And we believe, the evidence showing in our lame
And injured gait that was His aim.
His plot line, our fate, to suffer maim
And bear the heat, the fire, the flame.
So, dross distilled, with clearer voices to proclaim:
Alleluia to the God who came, who reigns.

winter

winter

Loosening the Noose and Matching Socks

Sometimes the best thing we can do is just the next thing.

We live out our faith by matching socks, instead of recounting our pain. We mock death and Satan by doing the dishes instead of crying in our soup. We pick up our sword by laughing at suppertime instead of staring off into the what-if’s of the future. We trust and obey by kissing fat cheeks.

When all of life is winter, what’s left to do but take the hill? Put on boots, walk in the snow and let the wind burn my cheeks on the way down. Be exhilarated, chuckle when you realize the snow went all the way up your pant leg. Go so fast that the tears of living run sideways out of your eyes.

take the hill

take the hill

I’m not commending some kind of pull yourself up by your boot straps and shove the pain away kind of getoverit-ism. Real people have real sorrows and they need to really grieve. I’m simply saying: what then? We must live.

Sin is like a noose around our necks. It wants to tighten and tighten and paralyze us. Sometimes trials act the same way. God gives us something big: a hardship, an unasked for difficulty and it just squeezes us so tightly that we can’t think about anything else! Pretty soon, it starts taking over our identity. Our trials can become badges we wear that let everyone know: this is who I am. It’s a precaution really, it’s like we want our fragility to be acknowledged, upheld. So we wear our suffering. We hold on to it and protect it. We dare not smile or talk about the weather or people might think we’re OK.

I’ve had this little song in my head that we used to sing growing up, “Trust and obey, for there’s no other way, to be happy in Jesus, but to trust and obey.” It always struck me as simplistic, cliched even. But God’s not afraid of a cliche, when there’s truth to be mined from it. Sometimes a cliche is just the thing to keep us from taking ourselves and our suffering too seriously.

Obedience and trust bring so much freedom. Trusting God that He’ll hold onto this trial for me. That I can come up for air and shock my 6 year old with my air guitar skillz and let out a belly laugh in the face of something scary. So often, I’ve no idea what to do in this unchartered place, but there is security in obeying.

I won’t presume to tell someone else they should be happy in their suffering. There are different kinds of trials and different kinds of people. There is intense acute pain, and there is the chronic long haul, of which we find ourselves. Wisdom is knowing that love is a tailored thing. But I will presume to tell myself to be happy. And there is one way for me to get to that happiness: trust and obey.

Trust God, trust His plans, His love, His commands. Match socks, do dishes, get a cup of coffee and explain long division, again. Laugh. This is your life, your portion, your work, your joyous children, your special child. Trust and obey and LIVE because that’s what Jesus does. Sing it with me, “Because He lives, I can face tomorrow..”

facing winter

facing winter

When God Roars in our Suffering

This year I decided to read the Bible chronologically for the first time.

Did you know that Job comes toward the beginning of Genesis in the chronological version? I didn’t. So, I was surprised, yet somehow not surprised, when a couple weeks ago, I found myself in Job. Sometimes God is subtle, sometimes not so much.

Finishing up the book of Job coincided with Titus’s eye surgery a week and a half ago. Immediately following the surgery, I was pretty euphoric. He did beautifully, his eyes are much straighter, he can focus a few feet out from his face, and we have wonderful doctors. All good things; it went about as well as we could have hoped.

But the days following his surgery, I found myself in an unexpected state of grief. His eye surgery did just what it was supposed to do: it straightened his eyes. But, somehow I had this crazy idea that it would be a kind of cure-all, that with his eyes fixed, he would be able to make the connections with people I’ve been so hoping for. Of course it didn’t do that. So I found myself mourning what should have been a reason for thankfulness.

In the days of feeling flattened by the disappointment that I didn’t see coming, I’ve felt my beliefs tested, my fears magnified, my strength sapped, my feet walking in a valley with no views to faraway mountaintops to keep me going. I also found myself in Job 38.

In Job 38-42 God tells me some big things about Himself, and his tone is not of the warm fuzzy variety. It’s more like a ROAR. Sometimes I’ve heard people say or have said myself, “God’s big enough to handle your questions, he can handle your fears, etc, bring them to him.” And I think that’s completely right. God can handle them.

But, sometimes the point isn’t whether God can handle them, it’s whether I can handle God’s answers to my questions, fears and doubts. Do I want him to answer? Am I ready for the questions He brings to the table? Must his answers meet my felt needs? Will I receive what he has to say with humility and trust, covering my mouth with my hands, silent and chastened?

As I have felt scared about tomorrow and scared about a year from now and scared about 5 years from now and 10 and 20, God hasn’t comforted my fears and questions with a warm gooey brownie hug. He has roared in my face and reminded me of His power and might and my smallness. He has indeed answered me, but it has been with the shout of a father who yells for his child as they are about to step out into busy street, unaware. He has grabbed my arm and snatched me up from danger and terrified me with his love. He has kept me from the peril of repeatedly indulging my doubts and fears.

“Then Job answered the Lord and said:
“Behold, I am of small account; what shall I answer you?
I lay my hand on my mouth.
I have spoken once, and I will not answer;
twice, but I will proceed no further.”

God’s roars are kindness. It is kindness to be frightened by The Lion who terrifies you to keep you from harm.  It is kindness to have your grievance aired, then lay your hand on your mouth. When Shasta is waiting at the tombs in the darkness of night in The Horse and His Boy, Aslan comes and roars to scare away the jackals that are coming to eat Shasta. Shasta doesn’t know that Aslan is protecting him, he is simply scared witless at the lion that he hears roaring. He’s afraid the lion will eat him, he doesn’t know The Lion is keeping him from being eaten.

And that’s what God does for me and for his children. He gives us a hair-raising fright at the picture of who He is, the demonstration of His power, His wisdom and abilities. Then we collapse in his arms, with meekness and trust. He grips our hand tightly and we dare not wrest it away. We know this is our Father, He loves us, He’s leading us on. We can’t see the mountaintops ahead or how it will all work out, but we can see Him and there’s nothing but kindness in his face.

“For God, who said, “Let light shine out of darkness,” has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ. But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us.” 2 Cor. 4:6,7

As an aside, I’d like to say that this blog remains simply a place for me to say what God’s teaching me, to try and get it down, so I don’t forget it; a place where I hope to encourage whoever might be reading, occasionally bless my kids, and ultimately bring glory to God. Please take it for what it’s worth. It’s a small slice of a much bigger picture of real life.

Eliza Turns Ten

We’ve got double digits in the house!

Eliza is ten, yet I’m convinced it was mere weeks ago when she turned nine. Convinced. The pictures tell another story though, showing a full year of growth, a full year of life. So, here’s the top ten of her year nine.

Eliza's spring fever 2013

Eliza’s spring fever 2013

1) As the oldest of the Dodds’ kids, you have the ability to set the tone in a wonderfully helpful way for the rest of the crew. Your cheerfulness and pitch-in attitude is contagious for everyone else.

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2) Responsibility has been a major theme this year. You take full responsibility for the bunnies and the fish. I very rarely have to remind you to feed them or check their water. You care about them and you make sure they’re well cared for. You’re a nurturer.

3) Related to nurturing animals, you also nurture growing things and love dirt and gardens. You grew yellow peppers and basil and  in your potted garden, along with a vine and some flowers and they all were thriving the whole summer and into fall.

eliza green thumb

eliza green thumb

4) You’ve officially earned the label bookworm. The sheer volume of books you’ve read this past year astounds me. It has even gotten you in some hot water on occasion, as you’d rather read than do just about anything else. And, winter is long and cold and what’s better than to curl up with a book?

5) Creativity remains as the years tick on. You enjoy a good art project or craft. I’m especially thrilled to see your creativity start to find its feet in the kitchen. Your apple crisp is Dad’s and my favorite!

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6) You remain an active girl, no matter the season. Gymnastics has been a fun new adventure!

7) You are a natural explorer and nature is the best place for you to exercise this passion. This fall, the woods in the back were perfect for this. You also devised and built an awesome tree fort with the help of your brother.

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happiness is a girl in a tree fort with bunnies

8) Music is a big part of you. You frequently have a song on your lips, which seems to inspire everyone else to sing along.

9) You’re willing to do hard things. I know it’s tough. I know there are things you’d rather not do, but I’m so thankful that you open yourself up to trying and pushing through and risking failure. I promise that someday you’ll be done with formal math.

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10) You’ve grown in grace this year, Eliza. It’s a beautiful thing to see your heart turn to the Lord in the middle of difficulties, even though all growth seems accompanied by growing pains, moving forward and falling back.

My hope and prayer for you is not that there would be no more difficulties in your life, because God’s ordained trouble for us all. But rather that as you face them, whether it be sin or sadness or conflict or simply difficult math, that you would press on in the grace He supplies. I pray you would receive the grace of the Lord through Jesus in the midst of all those things and that He would enliven and encourage you. May His grace toward you be lavish and unrelenting and may His Spirit pour grace upon grace into your heart as you surrender your life to Him.

Your His, on loan to us, our Eliza Grace.

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Seth Turns Eight

2014 comes with birthdays to celebrate, a year to reflect on; Seth is eight today.

How to fit it all into a pesky top ten list is a conundrum, but we do what we can.

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1) Intensity is key. Call it enthusiasm for life or go-get’em attitude or passion or drive, whatever that “it” is, you’ve got it in spades. You’re all in and you’re pulling us all along with you.

2) Optimism is a close second. You had the privilege of going to a Vikings game and were seated in the last row of the entire stadium to which you responded, “Wow, Dad, we can see the WHOLE field!” At home you told me, “I think we had the best seats in the whole place!”

slugs

slugs

3) Since our move, you kids have had more chores and more play. With that, you’ve definitely increased your stamina for both work and play. Endurance is such an important thing and you’re growing in it and even on occasion finding that work and play can be one!

Carpet pool

Carpet pool

4) You continue to enjoy soccer and football and gym class at co-op. Your above mentioned intensity, optimism and stamina are all fuel to your enjoyment.

5) You are an exuberant singer and piano player. It is delightful.

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6) You are a good brother to three sisters. It may not always be an easy task, but it is a special and important one, to be a tender-hearted brother to the girls. You are learning to honor them.

drivin'

drivin’

7) You are also a good brother to your brother. This new role has been embraced by you full throttle. I love seeing how you have a special bond with Titus and he responds to you differently than to his sisters, with more grunts.

photo credit: Jenny Rigney

photo credit: Jenny Rigney

8) You could play board games all the live long day. Quiddler, Rummikub, Five Crowns, Risk: you love a good game.

9) You take a lot of pleasure in your friends. After church you hurry to find your group of guys and visit for as long as we’ll let you.

tug o war

tug o war

10) You are a problem solver. You like things running smoothly and logically and usually have a plan for how to get there. What a blessing.

Dear Seth, as you approach life with lots of vigor and an eye to solve things, I pray that you would know deep deep down that our Big Problem has been solved. And it was solved by Someone who loves us and gave a solution to us because we could not and cannot solve it on our own. You know I’m talking about Jesus and the problem of sin. He’s fixed it for us and we get to say thank you and be happy in the resolution. Even more, we get to use our gifts and abilities to solve other much smaller problems for his glory, because we are made in His image. We can solve things like the problem of a messy room or fixing something that’s broken or hard math problem or even things like a cure for a disease.

May you trust God to solve the Big Problem for you, may you read of his solving, resolving stories in the Book. And may you imitate Him in working to solve the problems he brings your way for the good of the people He’s given to you and in His strength, for His glory.

Our boy

Our boy

We love you, son.

5 Months, 5 Kiddos, 5 Reasons for Hope

I snapped this picture today of our five kiddos because I love them and Titus is five months old.

Our 5 Loves

Our 5 Loves

Life’s been a blur of holidays, sickness, chaos, “break,” appointments, school, church. In some ways it’s the same as every other year. In some ways, completely different. Titus is generally at the center of everything. This is just natural mostly, at least among our kids at home. Then there’s the added focus of everyone else on him, which is just plain old love and kindness, yet signifies that something’s different with him, and breaks my heart a little.

As I’ve had some time now to live in our new normal, which is the normal of the unknown, I’ve come to realize a few things. Unknowns and uncertainty are always pushing for resolution. It’s a force all of its own and it pushes and nudges and nags. And not just on me, but on everyone who cares about Titus.

This push for resolution can push in many ways: there’s speculation, there’s wishful thinking, there’s morbid thinking and there’s head-in-the-sand-ignoring, and all these modes of being tip off of the tight rope that we must walk. I give in to all of them at some point or another depending on how sleep-deprived I am or how perfectly perfect Titus looked today or how distracted I am by the rest of life, but the real trick is to battle them and embrace the “we don’t know” of it all. Then push forward and LIVE life doing the things I can do. Not doing the things I can’t do.

Uncertainty begs us to hope in the wrong things and despair in the wrong things. The unknown wants us to have faith in the best outcome, as if positive thinking can will its desires to materialize. It also wants us to crumple up, give up and expect the worst.

Both these options are rabbit trails that distract us from real living. They can give us relief from the tight rope of uncertainty, but they keep us from living in the real world.

But just because I cannot have faith in a positive outcome for Titus, doesn’t mean I’m without hope. I’m full of hope. Hope is the name of the game. But my hope is in something bigger and better than Titus being a certain way or not. Titus is exactly who God made him and God knows just who he is, even when we don’t.

Here are my 5 reasons for hope:

1) I’m hopeful because God knows us and loves us. He loves Tom. He loves me. He loves our family, he loves each of our children and that includes Titus. And God’s love is a knowing love. He knows how weak I am. He knows our crazy life. He knows our dreams and desires. He knows our frailty and fears.. and he still loves us.

2) I’m hopeful because God is wise. God’s wisdom is a great thing to hope in. It’s also a great thing to rest in. He knows what he’s doing. He’s not asleep at the wheel. His wisdom is inscrutable. His wisdom put our family together exactly as it is.

3) I’m hopeful because God uses weakness for gain and glory. I have felt for a number of years that the most accurate one word description of me is: weak. Seems truer every year that goes by. Yet over and over he overcomes the weakness with his strength. As I watch Titus and his muscle weakness, it reminds me that God’s got a plan for weakness of all kinds–and it’s glorious.

4) I’m hopeful because every word of the Lord proves true. At a time when we are hanging on His every word, spoken through Son and written down in a book, this is something unspeakably dear. “His oath, his covenant, his love, support me in the ‘whelming flood. “

5) I’m hopeful because God raises the dead. “For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.” 2 Cor. 1:8, 9 We hope in a God who killed death, overcame it, and mocks it. “Where, O death, is your victory?”

I’m reminded in Isaiah that the Lord is working out his “plans formed of old, faithful and sure.” We’re walking in those plans, living them. And right in the middle of uncertainty we can say that his plans are faithful and sure. We may be walking a tight rope of uncertainty, but faithfulness and surety are around and about us. We cannot fall.