Paradox.

Imperfect. That’s what we are. That’s how we were born.

But then also in the image of God.

Redeemed, but still sinning. Already, but not yet.

This is the tension we live with, the seeming contradiction of our souls, our bodies, our beings.

And it applies even to the smallest baby.

I know, because I had the smallest baby. Okay, not THE smallest, but certainly the smallest my doctor had delivered.

I watched him struggle with his imperfections. His lungs could not breath, his kidneys failed twice, his heart failed to recognize that it was out of the womb and change the way the blood flowed. He needed heart surgery. Then he needed surgery again as his gut perforated. It had begun to die off, unable to digest food. A month later his retinas were on the verge of detachment. This was not a perfect being, it was a being slowly unraveling, held to this earth only by a thin thread and the wires and tubes of medical machinery.

But yet he was strikingly perfect, even at just over one pound. His hands, his sliver-sized translucent knuckles. When he was born he had perfect little fingers with fingernails. FINGERNAILS! How is that possible on so tiny a being?

Imperfect, but in the image of God.

A paradox. Like the world we live in. I don't understand.

How do I explain sin? I cannot. I wish it didn’t exist. How do I explain why my baby lived when others died? I cannot. I wish children did not die.

But I read this – the death? It’s not how God intended. Just as we were not created to give in to our selfish desires, or be victims of others’ sin, we were also not created to die tragic early deaths. We’re in the already – Christ has come and we are saved – and we are in the not-yet, living in a fallen and broken world where sin and death still plague us.

“See, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind. But be glad and rejoice forever in what I will create, for I will create Jerusalem to be a delight and its people a joy. I will rejoice over Jerusalem and take delight in my people; the sound of weeping and of crying will be heard in it no more. Never again will there be in it an infant who lives but a few days.”  - Isaiah 65:17-20

Never again.

I cannot tell you how much comfort verse 20 gives me. God knows that infants die, and he also thinks it isn't right.It isn't fair.

My son lives. This is by the amazing work of a team of medical professionals. This is also by God’s grace, giving life to kidneys that had failed when the nephrologist told us nothing more could be done, giving wisdom to doctors on when to perform PDA surgery, giving skilled steady hands to JAM’s surgeon for the many surgeries performed. Miraculous. The "already."

But there is still death. And sorrow.

We are there, with a good God who works miracles in small beings. We have a savior who has conquered death by death.

And we are not there, sin still reigns. It still impacts us and rocks us to the core. But somehow grace is still poured down, even in the midst of the scorching heat of sin and death, there are drops of rain, and dew collects on grasses.

I do not understand. It is a contradiction, a paradox I cannot unravel.

Already, but not yet.

This is what a one (and a quarter) pound baby taught me.

What is a miracle?

We are still in the throws of preparing to move. It's just enough of a messy process that we hope this is it - both that our home has finally sold (we have an offer on the table) AND that we don't ever.have.to.do.this.again. [Punctuation placed liberally to tell you just.how.done.with.this.I.feel.]

Jonathan is doing very well. He is a trickster and today's trick was standing, by himself, for one whole second. He was so proud.  Maybe he'll be walking by himself before this last season of quarantine is over. Maybe we'll surprise everyone when we reemerge from our winter hibernation.

In the mean time, take a look at my post on the Hand to Hold blog, where I discuss coming to term with the term "miracle" that is used liberally by doctors and friends alike to describe my son. You might be surprised, but I don't like the term. Read here to find out why.

It doesn't take a preemie to be given "a miracle."
You're just more aware of what a miracle life is when you've got a preemie.

GI doc

Tomorrow we add a GI specialist to JAM's team. It's about time. We hope to find out why he has vitamin deficiencies, isn't growing well, and has severe bowel pain almost daily.  More to come, I'm sure.

In the mean time, JAM is enjoying our house. In addition to adding a GI specialist, tomorrow is also the day our house goes on the market. Since the floors are swept and polished to perfection, we've taken down anything to bar his way and are allowing him to explore almost the whole house.  He's enjoyed it immensely and is so proud of his crawling ability. He's getting really good at getting everywhere. He even managed to wedge himself under our bed, a feat that was just traumatic enough for him that it is something I hope he won't repeat.

We've even practiced going up and down stairs. He doesn't quite have the strength to do it alone yet, but he's getting the hang of it and is so proud of himself.

His lungs suffered for a few days from either a cold or our cleaning spree (likely both) but he's back on track now.

Life catching up with us

Apologies. There will be no post giving a great idea of what to do in a season of RSV today.

In an attempt to get JAM the best care he needs (and protect him from germs these first few years), my husband has accepted a new job that allows me to stay at home for the time being.  I am currently working half-time.

Steve's job doesn't start for a few months, but the housing market is really very good right now, so we've been encouraged to get our house on the market this week. We were told this exactly six days ago. The realtor comes back out to check out the house again tomorrow.

So instead of trying to find things to keep us busy and sane, I find myself insane with the tasks of cleaning, painting, de-cluttering, and fixing. All while trying to keep most of the paint fumes and chemicals out of the air that surrounds my CLD baby.

It sounds awful, but thanks to the help of my parents and the amazing youth group at my church (yes, I broke quarantine again and allowed a dozen high schoolers to tromp through my home with cleaning supplies), we think it is probably possible.

In other news, I'll have a practically empty home by the end of this week, so I can finish my installment of activities for RSV season next Wednesday.

Wish us luck!

Surviving Isolation - Activit(ies) of the week #3 - Seven sensory sensations

The post below comes to us by guest blogger, Becca. Follow her daughter's story here: http://woodra01.wordpress.com/

Thank you so much, Becca, for sharing your ideas today!

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My little one, Charlie, was born the day she reached twenty six weeks gestation and weighed 790 grams. She is almost two years old now but continues to struggle with motor delays and sensory issues.

These are a few of her favorite home activities I use to help her with the delays:

1) Pillow Obstacle Course: When Charlie was a creeper and/or crawler, I used couch cushions, decorative cushions, and bed pillows to create an obstacle course for her to crawl over. Now that she is starting to walk, I stack the pillows a little higher (make sure they are steady), create a three pillow tunnel, or have her walk over a pillow (remain close by to catch any tumbles).

2) Rice or Bean Hunt: I use a plastic storage container, but a shoebox or a big pot will work just as well. I fill it with rice, beans, quinoa, millet, or anything that I have on hand. Then, I bury small toys in the container and leave a few visibly sticking out. After a prompt such as “Where’s the duck? I’m going to get it!” Charlie loves to dig through the container to find her toys.

Image courtesy of
http://woodra01.wordpress.com/

3) Textured Fabric Exploration: I gather different types of fabric items such as fleece, knit sweaters, towels, flannel, nylon, etc and place the fabrics in a clothes basket. Charlie and I explore the fabrics. I ask questions like “Is it scratchy? Is this one soft?” We also use the fabrics to play games such as peek a boo or to hide toys.

4) Pasta Sorting: Charlie and I make a game of putting the long pieces of uncooked spaghetti in to empty water bottles or soda bottles. Containers with wider mouths like a the cardboard center of paper towel roll or a jar can work for kids that need it.

5) Homemade Instruments: I make this one up each time we do it. Sometimes, I fill a container with a lid (tape it closed) with beans, rice, or anything that will make a rattle noise. For a quick option, I grab a pot or pan and a wooden spoon to make an instant percussion instrument. Charlie plays the instrument along with her favorite musical video.

6) Window Markers: Charlie likes to use washable markers, white board markers, or markers made specifically for windows on our sliding glass door. Sometimes, I draw and encourage her to imitate my drawing motion.

7) Stuffed Animal Safari: Charlie has a large number of stuffed animals. I place them in different locations around the house. Together we go on a safari! I say something like, “Let’s go find the bear! What does the bear say?” and we look around to find the selected animal. In the process, she climbs up stairs, practices her walking, and we work on her speech. After she finds the chosen animal, we place it in a collective area. When we finish, we recap the animals she has found and go over sounds.

About anxiety and depression - don't try to eat parfait when you have a stomach bug.

Today's post about surviving isolation will be published this afternoon. For now, however, I wanted to pause and take a look at another, uglier, part of this winter for me. The return of depression and anxiety. I think being vulnerable about mental illness is an important first step to helping society rid it of the trappings of failure that often come along with this sort of fight. So, I share, in hopes that by sharing others will share and understand that this sort of thing is both normal and treatable, so that they or those they love do not have to fight this illness alone.
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I struggle with an anxiety disorder. Several of my friends battle depression. They're close cousins, and they're often misunderstood.

Let's look at them like illnesses.

No, better yet, let's look at a commonly understood illness. The stomach bug.

Have you ever had a bad stomach bug? One where you just don't want to eat anything? And you're weak because, well, you haven't eaten anything?  And if you try to eat anything, you can't keep it down?

Picture trying to explain this to some friends, friends much like you except that they have never encountered nausea, doesn't know what it is to feel the stomach flu.

They hear you're sick and weak, so they bring you some soup.

You pick at it, maybe eat three bites, then set it aside. It's good, but the nausea is stronger.

"But soup ALWAYS makes people feel better," they say, "you should eat it, you'll be stronger.

"When I had a cold last week, I went on a soup diet," another one says, "I felt better by the end of the week!"

Seeing that you won't touch the soup, they decide it's probably not tasty enough. So they bring you a parfait. Because "everybody likes parfait."  They ask you what else they can bring you to get you to eat. You can't think of anything.

The thought of parfait makes you feel sick. But they can't understand that (having never experienced nausea) so they leave it on the center of your table and say they're going to go get you some ice cream. Because, one says to you, "when I was feeling really bad because my boyfriend broke up with me, I ate a tub of ice cream and felt better. And that's the only time I've had that weird feeling behind my nose that you're talking about -- like the nausea thing -- so I think it'll make you feel better too."

No matter what they bring, you won't eat. No matter how much they tell you you need food, no matter how much you know you need food, you can't eat -- because it hurts. In fact, the pushing of food on you just makes you feel worse, more nauseated, more like a failure for failing to get your body one of its basic needs -- food.

Sometimes you can get over the stomach bug on your own, sometimes you need to be hospitalized and have IV fluids pumped into you. Depends how bad it is.  But one thing is certain: just eating food and pushing through won't fix it. It makes it worse.

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Depression / anxiety are like that. You know you need to be happy, or calm, or put together, or what not. But happy thoughts don't get you there. It's not a matter of you being upset at something or depressed about something. It's not rational. It's not something you can work through if you just try hard enough. Yoga -- like a few tablespoons of broth -- might help, but it won't fix it.  Because when it comes down to it, you're fighting an illness.

I had every reason to be anxious for five months as my son was in the NICU, but during that time I was okay. Now, when I have a child more perfect than I could have imagined, when he's beaten all the odds and is doing so well, now when there is no cause for it -- now is when I cannot keep my pulse in check. Palpitations, higher blood pressure and yes, even anxiety attacks have crept back in. (Anxiety attacks present like heart attacks. I don't recommend them.) I have every confidence that God is carrying us through. I'm not really worried about the big things in life. That's right, I'm not worried. And yet that doesn't stop the anxiety. Because that's not what anxiety is.  Anxiety is not just being worried. Depression is not just feeling sad.

In this season of seasonal effective disorder, those of us who fight this sort of illness fight harder.

I've been blessed with a man who has never had a mental illness but somehow still understands my mental lapses. He lets me run into the bedroom and curl up into a ball. He gives me time away from the kids to run and swim to release endorphins. He takes time off work so I can seek a doctor's help when I cannot manage things alone. But -- and this is key -- he never makes me feel like what I am battling is anything more or less worse than a stomach bug. I have an illness, it needs treatment. I am not the illness I fight, and I cannot simply push through.

I am grateful today for those around me who help keep me sane. I am also grateful that winter is almost over.

Grateful in a week that should be hard

I am full of gratitude today. The sun came out, and this weekend has been amazing.

Ten days ago we received hard news. This was not bad news at all, but it caused us to have a simultaneous moment -or rather, a week's worth of moments- of both mourning and gratitude. Seems news can be both hard and good. 

Add to this news JAM's brain MRI (results will be received tomorrow) and the departure of my husband on a business trip last Thursday -- right before Valentine's Day and my daughter's birthday -- and it's been a crazy week.

I needed to get stuff done around the house, I needed to purge my soul a bit, but I had a sick JAM at home, and I had no back-up support. On top of that JAM is fighting a cold that has guaranteed me no more than three hours of sleep in a row for three nights straight. Poor kiddo! (Single parents - you're amazing!)

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Friday night a friend invited me and the kids out to Chuck-E-Cheese. "I heard you're single for Valentine's day as well. Let's make a date out of it!"

I was about to remind her that I couldn't, that JAM was in isolation and I couldn't take him to the germ-infested restaurant, when she also said, "My girlfriend wants to come over and watch Jonathan, for free."

What?!?

So I went off and enjoyed a much-needed girls-night-out with my older kids. It's rare that they get to do something out and about with me, JAM's needs often trump, so I was grateful that the way was paved for us to do this.

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On Saturday I had a to-do list longer than Montana to accomplish, and much of the to-do list involved throwing out "precious" pieces of artwork and happy meal toys in the basement. I'd gotten a lot of the purging done when the girls were at school, but I needed to do more before they noticed the big trash bin in their toy room. I needed the girls out of the house. 

On the way to Chunk-E-Cheese I got a call from my daughters' friends mom. "Lise wants to know if Ella wants to come over tomorrow for a play date at 10. ... Oh, and she wants to know if Mimi can come, too."  PERFECT! Probably two hours of time to clean. Just what I needed.

I dropped them off Saturday morning and asked when I should pick them up. "Oh, mid afternoon" Lise's mom replied.

MID afternoon?  MORE than two hours of JAM / cleaning time?!?

After lunch, sick JAM went down for a long nap and I got the entire playroom purged. Mission accomplished. After he woke up, I called to see if the girls were ready to be picked up (or, more honestly, Lise's parents were ready for the girls to be picked up).

"How about another hour?" Lise's mom cheerfully said into the phone.

REALLY??

So I found a sunbeam, and I sat in it. This isn't metaphorical, it's actual. It's been months and months since we had sun, but there it was, pushing its way through the cold of Michigan and onto my favorite armchair. Jonathan wanted to cuddle, so I made him sit in the warm sunbeam with me. We snuggled for half an hour before he decided playing on the floor would be more fun.

That sunbeam, that half an hour of peace and calm -- THAT made all the difference.

When JAM and I picked up the girls, Lise's mom invited me in for a glass of wine, and I got the company I very much needed. We spent a good hour discussing life before Jonathan's stomach told us it was time to go.

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Sunday also brought rest. This morning, just as JAM went down for a nap, a good friend picked the girls up for church, and I sat on the couch (the sun has again gone into hibernation), threw a blanket over my legs, and sipped on coffee. 

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By all accounts this should be one of the most stressful weeks I've had in months. I expected the unexpected blessings to end a long time ago, but they keep being showered on us. When we really need it, friends come through. When things get difficult, time in prayer has assured us that we're on the right path. We have peace where we should have anxiety and sorrow. It seems that sometimes in the dead of winter, the sun shines on us a bit. We are blessed. 

Thank you friends, for somehow knowing what we need, even before we ask.