twas a night without Aggie

'Twas a night without Aggie,

and all through the yard
The frogs and the flowers

were crying, and hard

That sweet dancing girl,

the flowers were missing
The frogs, without Aggie,

had noone for kissing 

The dog lay down, quiet. 
The swing, it stood still
The watering can empty
No Aggie to fill

Lorraine in her room
All alone, with no sister
She knew if it thundered
She really would miss her

In their beds causing trouble
Were three little boys
Talking of Aggie
And making some noise

And Petie, sweet Petie
In a puddle of drool
Wondered why Aggie 

was still off at school

Working hard in the kitchen
On floors that were muddy
Was mommy, thinking of
Her sweet kitchen buddy

Mom looked out the window
And whispered a prayer

That God would keep Aggie
Warm and safe in His care

That Jesus would help her
In appointments and tests,
To think of His love,
In His hand she rests

Mom knew God was with her,
Was holding her tight,
Even in Cleveland
In the dark of the night

When will Aggie come back?
Asked her sister and brothers,
Buddies on her bed,

And even her mother

We wait for the moment

Aggie bursts through the door
With pictures and kisses

and hugs galore

Waiting to see her

and hug her to pieces

Saying "Aggie’s come back!

Hallelujah! Thanks Jesus!"

On being loved in the waiting room

As I think back to our days of waiting rooms and hospital smells, I remember the little things that helped carry us through it.  God used many of you to help us see that suffering did not mean we were unloved, only that we were suffering.

I remember the meals, prayers, phone calls, cards and emails.  Many thought to do these things, and each small gift nourished our family as we got along minute by minute.

There were other things that helped me through too, things I did not know to ask for or even know I needed them, until I received them and was blessed.  But this is how I would have asked had I known how to do so.

Let me hide behind technology a little bit

Especially when Aggie had her intensive testing done and we were  dealing with surgery, it became utterly exhausting to me to talk on the phone.  I simply did not have the strength to share the details over and over again, to "keep it together" so that the person on the other end of the phone did not have to worry too much about how I was handling everything.  I was suffering, and it was all I could do to put one foot in front of the other and keep doing what was in front of me. I blogged when I could, but had very little to say to people by phone.  I appreciated that people seemed to understand that.

Take charge of little details

Someone tell me where I left my keys, and remind me to eat something.  Someone decide for me what it is I might like to eat, and bring me to that place to get it.

Just be with me

It is not fun to be the person or family that reminds everyone of such an enormous sad thing.  Some withdrew, and I understood, knowing that it was usually those who were carrying too much grief already to take mine on as well.  Some loved us through it, even though it hurt them to do so-- love in a hospital room means sharing worry and grief-- those who were willing to have their hearts ache along with ours were pictures of grace and compassion to me.

Remind me what else is out there

During the weeks at Cleveland I remember feeling like our world had become so small.  Everything was Aggie's condition, everything was hospital and worry and trial.  Yet some who shared our grief were bold enough to share bits of their still normal lives with me too, and I was surprised at how I appreciated that.  A funny story about what someones kid did that day, news from home or school that had nothing to do with us-- those were blessed reminders that life was still going on outside the hospital, and I could hope to join that world again someday.  I had wanted to talk about something else, even just for a minute, but I had no idea what else there could be other than my sick child.

Acknowledge my pain and remind me of Hope
Don't deny my pain with cliches, but look it full in the face, and then tell me that Truth is still Truth.  Tell me what I already know. Scripture or hymns, things I have heard a thousand times- I need to hear them again.  Nothing fancy or profound, just the basic faith we share: Suffering is awful, but temporary, because Jesus loves us.  Even when we hurt, we are safe in His love for us.

How about you, readers who have been in dark hospital rooms...  What would you add to my list?

Praise like an Aggie!

As Aggie has her MRI today,

I think of her, pray for her,

and praise God for every moment of life with her.

The Lord is good to us!

Praise the LORD

Praise the LORD, my soul.

I will praise the LORD all my life;

I will sing praise to my God as long as I live.

Do not put your trust in princes,

in human beings, who cannot save.

When their spirit departs, they return to the ground;

on that very day their plans come to nothing.

Blessed are those whose help is the God of Jacob,

whose hope is in the LORD their God.

Psalm 146:1-5

Praise the LORD!

How good it is to sing praises to our God,

how pleasant and fitting to praise him!

The LORD builds up Jerusalem;

he gathers the exiles of Israel.

He heals the brokenhearted

and binds up their wounds.

Psalm 147:1-3

Let them praise his name with dancing

and make music to him with tambourine and the harp.

For the Lord takes delight in his people;

he crowns the humble with salvation.

Let the saints rejoice in this honor and sing for joy in their beds.

Psalm 149:3-5

Fragility

How fragile is this life.  How vulnerable those we love to death, destruction, and so many things out of our control.  How can you not be reminded of this on a day like today, witnessing the devastation in Japan?

I wish I could forget.  I wish it were not so.

Is that the way I will meet my end?  If not, how will it go for me?  I remember all too much that I am dust.

Aggie is in bed early tonight, with the bug that Eldon has had all week.  I snuggled her to sleep for the first time in a long time, and could not help but remember her days of epilepsy as I laid there with her.  My dear, fragile Aggie, how will it go with you?  I remember that you are dust.

It is easy to feel secure in this life when things are normal.  And then suddenly, one quick moment comes, and normal vanishes.  What, then, is left?

There is only one hope for we who are walking dust.  If we have a God, and if He is a forgiving God and a loving God, then all can never be lost.

In Christ, even sinners sleep secure, even dust breathes in life.

As a father has compassion on his children, 

   so the LORD has compassion on those who fear him; 

for he knows how we are formed, 

Psalm 103:13-14

   he remembers that we are dust. 

If God were here

(I wrote this for the newsletter awhile back but never posted it here. Yet these thoughts come back again as our church grieves the loss of a dear member. In times like this we are glad when God's word reminds us that it is not always going to be this way.)

One beautiful evening this spring the girls and I took a walk down our country road. We talked excitedly of the new baby that was soon to come- in a couple weeks or so, I told them. Lorraine, ever fascinated with babies, asked me “Mommy, why do the doctors not know what day that baby will come? Why do they just have to guess?”

“Well, honey, there are still lots of things even doctors don't know about our bodies and how God made us. We still get sick... there are still some things doctors don't know how to fix.”

“Mommy!” she said excitedly, as though stumbling on a terrific original thought, “If God were here, nobody would ever get sick again!”

I opened my mouth to take advantage of this teaching opportunity, to say something about God doing good things for us even in sickness, about the cross, or the good things that can come out of bad days...but as I took a breath, the grief that I had been carrying all day about Aggie came rushing up my throat. Images filled my head- the six seizures so far that day, the one on the top of the slide at the playground that could have been disastrous, the weepy eyes and confusion caused by her newest medicine that doesn't seem to be working.... It took all my energy to get my breath back. I turned my eyes to the woods and used all of my strength to hold back my tears. In true toddler fashion Lorraine immediately forgot what we were talking about and moved on to something else. Now it is night, and she sleeps peacefully. I am awake, her comment still haunting me.

Marcus has a high fever and an awful cough tonight.
If God were here.....

I just woke Aggie to check her for a rash or another side effect from her new medicine. I could hardly wake her... is it because it is midnight, because she just had another seizure, or because this new medicine is hurting her sweet body already?
If God where here...

We don't like to say this out loud, but sometimes we do feel abandoned in our pain. We face suffering beyond explanation, and pain that does go beyond what we can handle, pious platitudes aside. We sigh and ache and grieve, we shiver under the shadow of death, and we are sure things would be much better if only God were here.

So is He really here? How do we know? The enemy would have us do what comes naturally to us, and look to our circumstances to answer that question. If we are healthy and happy, it is easy to believe that there is a God, and that He loves us. If we are hurting and miserable, then it is easy to believe that everything we have been told about this loving God must be a lie, or that it does not apply to us. We are attacked with doubts, and doubt turns into fear, and our hearts sink with our burdens.

I can only imagine the disciples and friends of Jesus felt this way as they watched His crucifixion. Of all the dark days humanity has ever experienced, surely that was the darkest. As the innocent Son of God was crushed under the weight of sin and evil, even the sun withheld its rays, All life and hope seemed to disappear with the light.

Yet God was there! His love and grace were right there in that dark and terrible scene. We can see it now as we look back, now that we have learned from the resurrected Christ exactly what God was doing that day.

Because of that day and the resurrection that followed, we have good reason to believe Jesus' words: “I will never leave you nor forsake you.” He comes to us in our time of trial, He sees our doubtful, struggling hearts, and sends His children and His Word to give us new life. His Spirit reminds us of His faithfulness to us in days past, how time and again He rescued us, even when we were rebellious and stubborn. Like His children throughout all of history, we will face trials as we journey through this world, yet like those children, we will be carried safely through them all. God is with us.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen. (1 Peter 5:10-11)

sunshine days

We've been through quite a storm, and things are finally settling down.

Today marks 2 weeks- 2 weeks seizure free, 2 weeks tumor free, 2 weeks of healthy life for Aggie and relief for all of us who love her. She really does seem like HERSELF again, and the real, healthy Aggie shines so brightly right now you can't help but rejoice. We are standing in front of Niagra Falls, watching the love and mercy of God pour down on our family.

Do I dare enjoy it? Do I dare let myself love this new healthy Aggie? What if she goes away again? For a couple of days after the surgery I tried to keep my guard up, to guard against hope and joy just in case it wasn't going to last. But in just a few days her sweet laugh penetrated that flimsy wall, and now I just praise God for her and love her.

I cried tears of gratitude and relief that day.
The next day we got the pathology report.

The tumor is a slightly nastier kind than they first suspected. It is a Grade 2, not a Grade 1. Grade 1 tumors typically can be completely removed, and if the seizures go away, the patient is considered cured. Grade 2 tumors are more likely to come back.

It is possible that the neurosurgeon got all the tumor, and if he did, it will not come back. But if he missed just one tiny cell, it will multiply, and it is likely to come back with a vengeance. If it comes back, we will hope surgery is a possibility again (it depends on where in the brain), and at that point she will also need chemo and radiation.

As God would have it, Aggie's neurosurgen happens to be one of the best on the planet, and he also happens to be one of the very few who has ever worked with her particular type of tumor. (Her chances of having this kind were literally one in a million.) Even he has never worked with a child with this kind of tumor, so in short, her long term prognosis is uncertain. She will continue to need MRIs every six months. If nothing comes back in the next ten years, she will be considered cured.

So I only have to hold my breath for ten more years!

We have healthy, happy Aggie back, but the shadow still lingers over our home. And we have learned that we just can't live holding our breath all the time. We have been living with a threat like this with epilepsy- just because it has changed its name to 'tumor' doesn't mean it needs to be scarier. So Aggie is mortal and we don't know her future. The same can be said of any of the kids, really. God is in control- it is not our job to know what lies ahead but to do the works of love he has given us today.

We still hear the thunder rumbling in the distance a little bit, and we are not quite sure if it's the storm leaving or another one coming.... but for now, we will thank the Lord for the sunshine.

God has been faithful to carry us this far. He will be faithful, no matter what the future.

recovery beds

Snuggling my Aggie this afternoon in the hospital bed, made me think of another hospital bed, when I curled up with newborn Aggie, praising God for the miracle of life.

There was some pain mixed with the joy of that day. Aggie’s labor was definitely the hardest . My body ached from 11hrs of back labor with no drugs, and my heart ached for Josh who was in Iraq instead of there snuggling her with me.

When Aggie was born, the medical world that she was born into seemed almost irrelevant. I felt like really, I had done all the work getting her here. The midwife caught her and cleaned her up, and it seemed like that was about it. Most of the credit went to God who made her, and who made my body in such a way that it could keep her safe and fed while she grew, then get her out when she was ready.

And when it was over, I know every mother understands this feeling- I felt like we had just gone through the hardest thing ever, my little one and I … yet there in that recovery bed, it was nothing but the sweet smell of newborn skin, warm snuggles, relief, and the sleep of happy exhaustion.

In this bed, we also have exhaustion, joy and relief. The pains of brain surgery and everything that went with it were far greater than a mere eleven hours of labor. And so, the recovery will be slower, for my little one and for her mother.

This time, the world of medical professionals is anything but irrelevant. We lay here in an enormous hospital (19000 employees!) We have to be careful how we move in this recovery bed- there are wires everywhere- wires that help her care team monitor her heart, lungs, blood pressure, oxygen level, tubes that keep her hydrated and medicated as needed- wires and tubes that are making her recovery from epilepsy possible.

Fifty years ago, Aggie’s story would have been so much different. The technology that pinpointed the problem and made it possible for them to get the tumor out of her simply was not there. Fifty years ago, we would have had very little hope for her future. It is likely that we would have been helpless as she got progressively worse and finally died.

Here in this recovery bed, I do not feel responsible at all for the miracle that took place. I am praising God not for the way my body works, but for the way this hospital works, for the medical professionals of all kinds who devote their lives to research and healing. I am praising God for the gifts and skills he gave to these people, and for their willingness to use them to serve others. I am praising God for people who can handle giving screaming children IVs, emptying bedpans, and drilling into skulls, so that my baby can have a future.

There are different kinds of gifts, but the same Spirit. There are different kinds of service, but the same Lord. There are different kinds of working, but the same God works all of them in all men. I Cor 12 4-6

Acceptance and fight

I am starting to accept the uber-vigilance required to care for our little Aggie. This still strikes me as strange as she seems so… normal I guess, during her good times. But she is not like other four year olds who can be allowed to play freely on the playground or the trampoline or the beach. It is highly likely that she will lose consciousness for seconds or minutes once every hour or two- and she falls with her seizures at least once every day. This is not undue mama-anxiety I am fighting- a fall really could cause serious injury or death. So if I am going to allow her to do risky things, (like leave the house) I must stay close and keep watch. (Put on your lace-up shoes, flylady. You are going to work!)

So as I have my morning coffee I often give myself a little peptalk that goes something like this:

Today Aggie will have seizures. Today Aggie will require extra-ordinary supervision, mind-alerting drugs, and emergency preparedness plans. Today my attention will be divided, and the other children will not get everything they want. Today my seizure antenna will be on high power, and my feet will always be ready to catch her when (not if) she falls. Today if we go out in public, we will risk embarrassment and injury. Today letting her “be a kid” will come with anxiety and constant supervision. Today we must live with epilepsy. (And Lord, please give me what I need to live in this world today, and keep working on that better plan for tomorrow!)

Yet we cannot afford too much acceptance at this stage, for Aggie's sake. We must fight for her, become her advocates, do everything we can to get her the best help available. As a friend from the epilepsy foundation forums said to me, “even while you still love the aggie with you, never forget to love that aggie that she was first, or was meant to be, that is hidden in her heart... just hold it as a treasure that is on the shelf... and love the treasure that is out in the open daily...”

So as I get ready for Cleveland, I go accepting that this is our trial at the moment, but I also go with the willingness to do anything, to try anything, if it can help Aggie be Aggie again.

Jesus go before us!

Epilepsy- the stages of grief: Sadness and Anger

VBS was very hard for me this year. Last year Aggie thrived in that situation. She participated, she made friends, she loved every second of it. She was not the problem child in the room. She did not require 1:1 care. She did not get distracted from the Bible stories by a compulsive need to eat a sticker.

She had her normal moments this year, of course, and I am so grateful for those. But some of her behaviors are becoming unmanageable. And I really mean UNmanageable- no amount of training or preparing or disciplining will help with behaviors a child has no control over. Some things we just survive, and when that gets too tough or too disruptive, we just go home.

It’s those little things that other people probably hardly notice that break my heart lately.

I know other kids have trouble listening, other kids put odd things in their mouth, other kids feel anti-social at times, other kids like to climb on everything and wash their hands with toothpaste (ok maybe not that last one) but when I see Aggie doing these things it is just so NOT her. It is epilepsy, or the drugs, or both. It is THE PROBLEM reaching into her tiny little head and changing things around, confusing her and all of us, making her think and do things she normally would not. It makes me mad and want to cry all at once.

Part of me is still waiting for her to just SNAP OUT OF IT already! But Josh says, “the Aggie we knew before epilepsy is gone.” The other night we were talking about how Aggie used to love interacting with others, but now spends large amounts of time alone doing quiet, sometimes repetitive activities. Her Grammy said, “that’s how she is now and that’s ok.” My heart does not want to accept that, but it is true. We just need to learn to love her this way.

I love Aggie. I love the Aggie I know, the one I gave birth to while daddy was in Iraq, the one who loves starting parties and having fun and teasing and drinking chocolate milk. Now and then I get glimpses of that Aggie, though most of the time I am taking care of other Aggies: There's wild and out of control Aggie, tired and pathetic Aggie, confused Aggie, drunk and happy Aggie, mildly autistic Aggie, antisocial Aggie, emotionally fragile Aggie, and close-to-normal Aggie, just to name a few. I never know how she is going to be from hour to the next. And I still have hope that things will get better when we find a way to manage her epilepsy- but for now, this unpredictability is part of our daily lives.

As I thought about this the other day, a ridiculous song popped into my head. I'm sure you know the oldie- “If you can't be with the one you love, honey, love the one you're with!”

It's quite an odd song to have for a theme song, especially for a pastor's wife! But it fits my life perfectly this month- plus, it makes me laugh!

Lord I have prayed a million times for you to fix Aggie, yet the storm rages on. Your thoughts and your plans are bigger than mine- help me to trust you through this trial, to remember that you are “in the boat” with us. I see changes in Aggie that break my heart, but the fact is, this unpredictable, changing Aggie is the one I am called to love and to serve. Lord make my heart bigger, help me adapt to her new needs, help me to accept where she is right now and love her has she needs to be loved today. In Jesus' name, Amen.

Epilepsy- the stages of grief: Denial

Even though Aggie has been having seizures since last fall, there is still a bit of unreality to it all for me. Some days I feel like I see what is going on and I am handling it. But other days are more of a struggle, especially if we are considering doing something new to adapt to her disability, or considering another risky drug, or talking about surgery. My instinct is to resist, and my heart cries “Are we really talking about brain surgery? WAIT a minute- she was JUST fine!”

For example, some days Aggie is incredibly oral- constantly chewing or licking everything, and I mean everything. It's weird, it's gross, and it has the potential to drive me bonkers. Apparently this is common with epilepsy in the temporal lobe and related to anxiety. Apparently this is probably more of a compulsive need than a trainable discipline issue. Apparently they make safe chewable necklaces for children with this problem. But my four year old princess wearing a slobbery necklace all the time? Wait just a minute… she’s not really that bad, and it’s not all the time, and she was JUST fine! Like five minutes ago (ok last fall.) It feels like I just turned my head for one minute, she was just fine and now she is not. Like I am half expecting to see things snap right back to normal if we just wait... just a few more minutes… maybe she will be just fine again.

I guess it is the same kind of thing people go through after a loved one dies suddenly or someone gets a nasty diagnosis… We stare in shock and amazement- stammering "they were just fine, how can this be?"

Death and sickness are everywhere, and yet we are always so shocked when they come near us. Why is that? We feel good at this very moment, so we expect to tonight, and tomorrow, and a few years from now. We are receiving life in full measure at this very moment, by pure grace, and because we have been given it for however many years we think it is ours to keep forever. Our kids come out of the womb healthy and we expect them to stay that way.

Then in a moment things change. Our eyes are opened, and we see how fragile we are. And we try desperately to close our eyes again, to return to that sweet, safe dream.

But there is no safety at all, absolutely none, other than in the hands of our God.

Other refuge I have none, hangs my helpless soul on Thee
Leave, ah leave, me not alone, still support and comfort me.

All my trust on Thee is stayed,
All my help from Thee I bring

Cover my defenseless head with the shadow of Thy wing.

(Jesus lover of my soul, TLH 345)

To Aggie, my nap buddy

Aggie Sue, I love when you are my nap buddy. To see my little tornado relatively still and calm is a rare treat. I love the way you ask to hold my hand until you fall asleep.

Today you had a long seizure right before nap time that made you so tired you were asleep in my bed even before I laid the other kids down. I climbed in next to you anyway- I just wanted to be close to you. I held your little hand.

Like so many times before, I rested next to you and stroked your hair. My heart loved and ached, and my eyes were relieved to release a few tears that had been resting there all day. As I sighed over your raccoon eyes and I stroked your hair, I wondered where on that beautiful head they would cut should they have to do surgery. My spirit prayed fervently to the God who loves us both.

We laid there in the sunshine, you snored peacefully as I wrestled with my worries. The sun shone brightly even through the blinds, and soon I found myself relaxing into the quiet and warmth of the bed.

I thank God for that moment, when you and I lay there in the sun, wrapped in warm blankets and love, enjoying a green pasture before our journey through the valley.

We have darkness to go through yet, my dear child. I am sure we will often hold hands through the darkness as we are doing now. I suspect we will get separated for some of it. I know we will be carried through all of it by Him who loves us both, the One who has been there before.

But for this sweet moment, we rest on our pillows that smell like home.

I wonder, after the days of valleys and darkness, will we be given moments like this again? Will we rest together, hold hands, and enjoy the warmth of each others love on pillows that smell like Home? Will we give goodnight kisses, smile, say I love you for the millionth time, in that Other place? Perhaps then the shadows of the valley will be distant memories. Perhaps the sun will be the Light of Christ, the light that chased away our fears and pain, and our “I love yous” will finally be sweet and pure and simple.

A thought for the day

“People tell you to be strong- I say be weak and be loved.” Aunt Julie

Little did I know as I went to church yesterday morning that I was about to “be weak and loved” right there in front of everybody. I need to teach my dear husband to warn me when he is going to preach sermons like that- I didn't even bring tissues! (thank you Crista for sharing yours!)

Now, encouraged by the love of family, church family, friends, and God himself, we are getting ready to go to our big appointment. Thanks in advance for all your prayers today- we meet with the neurologist at 11am this morning. I will post again as soon as I can!

Dear Father, thank you for your constant provision for Aggie and her family. As we go to meet with her doctor this morning, help us to remember that she is your child, and you love her more than we do. Help us to trust you no matter what we face today, knowing that you have promised never to forsake your children and to bring good out of every evil we face in this life. You have promised peace for your children even in the most difficult situations- please graciously grant this peace to her parents and all who are concerned for her. Thank you for your great love for us. Amen.

“Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19

AGGIE NEWS:
Please pray for her on Wednesday as she has an MRI- she will be sedated ("conscious sedation") Pray also for her parents as we wait for results. This is one of the tests the doctor will use to look for underlying causes of her epilepsy. We meet with the doctor next monday and hope to have a treatment plan by then. She is doing the same right now- we are all learning to cope with the frequent seizures and God is providing for our family in every way during this time. Thank you for your prayers!


“Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19


Her episodes started three weeks ago now. First they were just strange moments of staring and acting like she couldn't hear us. Then they started happening more often, sometimes with a strange giggle, sometimes with aimless walking and other symptoms. The doctor scheduled tests, we all suspected seizures, and now we are waiting.

We did research. We noticed how exhausted she seemed all the time, like whatever was going on in that little head of hers was completely draining. We learned about different kinds of seizures, and began to suspect she has some form of epilepsy. (This has now been confirmed.) We read about drug treatments, nasty side effects, restrictive diets, and safety precautions. I began to journal the episodes: how often, how long, other symptoms, anything I could think of that might be related. I now have pages and pages of details, and I do not know if any of them are important. Still we wait.

Today she had seven seizures that I am aware of. After one of them, she wanted a hug and some “mommy snuggles” while she watched TV. I held her close to me, kissed her hair, and whispered “Jesus, please help Aggie.”

“Why did you say that mommy?” she said and looked up at me with her innocent, sunken eyes.

I willed the tears that were forming in my eyes to stay there while I rubbed her back and told her not to worry, that she just seems tired and maybe her body is fighting something. She is completely unaware that she is having problems at all- her seizures leave absolutely no trace in her memory.

She is still my little hummingbird, fluttering around enjoying as much of life as possible. She knows nothing about her parent's worries, the tests that are coming, or the decisions we will have to make for her. She does not know her eyes look sunken and tired, nor why everyone asks her if she feels okay several times a day.

Tonight I thought of baby Vivian and her parents. Her life was so short, less than six months, and for her parents it was full of worry, tests, decisions, and nights of watching and wondering And she lived her short life, every day full of tubes and nurses and tests, and every day resting in the love of her parents; hearing their voices, feeling their arms around her. I do not know what baby Vivian knew of the pain, but I am confident of this: she knew she was loved. Her parents loved her while they bore for her a burden she didn't even know she had.

That rather sums up our job as parents, doesn't it? We bear burdens for our children that they do not even know they have and could not bear alone. We care for their bodies, making nutritious meals, making sure they get enough sleep, wear warm enough clothes, keep up with doctor visits, and get lots of fresh air. We care for their minds, providing for their education, socialization, and mental stimulation. We care for their souls, by bringing them to the Lord in Baptism and feeding their faith with God's Word at home and at church. We care for them when it is difficult: when they are sick, rebellious, or in need.

Unless the LORD builds the house,
its builders labor in vain.
Unless the LORD watches over the city,
the watchmen stand guard in vain. Psalm 127:1

Unless the Lord cares for Aggie, we test and learn and care for her in vain. But He does care for Aggie, He has promised in her Baptism and in His Word. She is His little lamb, and He loves her more than I do. He bore her heaviest burden: sin and death: He cared when it hurt, when it cost His life.

Aggie is God's child. She has not been promised a life without suffering: in fact, God's Word tells us that suffering is exactly what we should expect during our time on earth. Yet, we also know that “the sufferings of this present time are not worth being compared with the glory that will be revealed.” We believe that God works ALL things, even epilepsy, for the good of His children. (Romans 8)

As parents, we are called to love our children and bear their burdens with them, just as God has done for us. Sometimes it is easy; sometimes it hurts terribly.. I am not strong enough to watch my child suffer with epilepsy. My heart cannot bear holding her while she recovers from a seizure, knowing I can do nothing to prevent the next one from coming. Aggie and I are the same in that way: we are scared, fragile, and powerless over the future. What can we do but reach out for our Fathers arms?

Just like our children, we also have a Father who bears burdens for us that we do not know we have and cannot bear alone. During these recent struggles with Aggie, I have seen God's hand every single day in the love of others. Through His other children he has provided listening ears, encouragement, strength, babysitting for the other children, and even meals on nights when I was too tired to cook. He bears my burdens---giving me the strength to share in hers.

Together Aggie and I reach for God's help, and God is faithful. He gives strength for each day, and His love drives out fear. He encourages Aggie through caring siblings, cozy blankets, and “mommy snuggles.” And this mommy does not run out of snuggles, because I know that as I hold her, Jesus holds her too. And as I hold her, I am also being held by Him who loves us both.