Letting Go

Today is the 10th day that Annika is without any g-tube feedings.  Ten days!  No more carrying Stripey, her little freezer bag, everywhere.  No more machine beeping in the middle of the night.  No more taping and hooking and setting up each night.  No more tube being pulled out of her stomach.  No more thoughts about it - every day, all day!

It's pretty crazy though.  I can place myself back in the hospital room the day of her surgery in May last year.  I so clearly remember the first instructions from the nurse, where I was standing in the room, the smells of the place and not knowing how to touch that little tube now attached to my 5 month old's stomach.  I can see my tiny one lying on her back with the white bars around her as the nurse demonstrated how to clean the tube, change the gauze, and how to twist the tube daily.  I see clearly the little table at the end of her crib, scattered with foreign medical paraphernalia that would soon become so familiar.  I feel myself walking by his side and hear the doctor's voice echoing in my mind, "We don't know how long...no, there's no way to know.  And when she does start eating on her own, she'll probably have the tube in for at least 6 months.  That's how it is with heart babies (heart babies) (heart babies)."  

When they sent us home, it was a strange thing to realize that home wasn't quite home anymore but an extension of the hospital.  Annika had her own IV pole, and the weird hospital noises sounded normal the next time we visited because we lived with those beepings every day now.  And there's so much more.

But here we are now.  November, 2014.  Annika's last g-tube feeding (hopefully ever!) happened on October 30th.  The week before, her hero GI doctor proclaimed out loud that "this child doesn't need me anymore!  I mean, look at her!  I want all her doctors to see how amazing she looks.  Can this be the same, failing little thing I first met in the hospital?" and she gave us one more week to taper her off of her g-tube feedings.  I exuberantly cancelled school for the rest of the day, drove to James' work to kiss him, decorated the house with the kids and served a celebratory meal.  James added to the joy by buying me a beautiful bouquet of flowers (and he scored 50,000 points).

That pole and the pump and the formula and the syringes and the medical tape have been my constant companions now for 17 months.  It felt weird, in those last seven nights of working with them, to think that I would put them away and possibly never use them again.  I actually found myself feeling sad.  What?!  Am I such a person of habit I could grieve the loss of these things I never asked for or wanted?  Can I be sad about something I've been anticipating ending since day one?  I admit, I was happy to have a week to wean myself off of Annika's medical supplies and my routine.

The day came, though, and I gladly packed everything into a box and slid it under the crib.  I folded the IV pole up and pushed it next to her supplies.  But as I worked, I remembered how casually and quickly the nurses in the hospital disposed of these plastic supplies-new ones every day.  Would they laugh at me, holding onto garbage?

The whole thing made me a little introspective.  What else am I holding onto?  There's so much that happens in life that we never expect, and yet, each little thing-as it touches us-leaves a little mark, a little habit, a little change.  Sometimes it's subtle, sometimes not.  Sometimes it's physical, sometimes not.  Sometimes it's good, sometimes not.  But every time, our selves, our spiritual selves react to that thing as we run to God, or push Him away.  And every once in a while, if we stop and look, we find that we love that thing we thought we never could and we wonder how it ever happened.  How did this become a part of me?  

And it's hard to let go.

To Do

• Grocery shop
• Clean 
• bathrooms
• kitchen
• + wipe cupboards and walls
• + mop
• living room
• bedrooms
• Dress the baby
• Feeding therapy with the baby
• Dispense medications
• Mix formula
• Clean up time with the kids
• Clean up kids spills and messes (5-10X daily)
• Read with each kid for at least 10 minutes each day
• Listen to my kids
• Make Breakfast
• Clean up Breakfast
• Make Lunch
• Clean up Lunch
• Make Dinner
• Clean up Dinner
• Make snacks 
• Clean up Snacks
• Comfort crying kids
• Supervise the baby outside
• Change diapers
• Wash laundry
• Fold laundry
• Guard laundry from jumping kids and swinging objects
• Put away laundry
• Bathe kids
• Take kids to the park
• Mediate kids' arguments
• Discipline
• Discipline again (and again and again and again)
• Make Doctor's appointments
• Go to Doctor's appointments
• Order medical supplies
• Go the the Library
• Drop and pick-up kid from co-op
• Home school my kids
• Make sure I'm teaching the right curriculum
• Follow the proper method when I teach
• Document what I teach
• Document how in depth each kid knows what I've taught
• Document each state standard they have met
• E-mail people
• Other communication with people
• Pay bills
• Wash the van
• Call the phone company
• Paint that bare spot on the wall
• Fix the shower
• Fix the bathroom drawer
• Fix the shelf
• Exercise
• Eat healthy
• Shower
• Brush my hair
• Look at my husband
• Talk to my husband
• Beat my husband in rummicub
• Play the piano
• Play the guitar
• Sing
• Spend quiet time in prayer
• Read my Bible

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When I quit my job after the 3rd baby came, someone asked me what I was planning on DOING all day at home!?  I guess, before I quit, I managed to fit all these things in, somehow, while also working outside of the home (and so many people I know and love follow the working road still-I commend them for their hard, hard work and perseverance!).  At any rate, this is where I'm at today and this is my current list of this year, this stage.  I am not sitting around bored.  I never wonder what to do.  In fact, as you might have noticed, I feel a bit crazy most of the time.

This list is my list.  You have your own etchings that make the busyness of your life - different from mine.  The point is-we've all got lists of demands.  My list is not in any particular order and it's not comprehensive, but I got too bored writing it to add anymore to it.  Really, the most important part of my list are the very last two listed.  And-ironically-spiritual battlishly-sadly-or somethingly-those tend to be the most difficult two to fit in.

Just over a year ago, when I was in the dredges of sick baby and I couldn't often go to church and I was running all the time to keep everyone alive at home and I was drop dead tired, I had to find another way spend time with God.  What I had known as worship, up until then, was to spend time reading my Bible each day and to meet together on Sundays with other Christians.  Also, I had experienced a few camps and retreats which bolstered my faith.   But I couldn't do any of that anymore.  I was so supported by people around me, but at the same time, so alone in the task given me.  I prayed to find a way to integrate worship into my everyday life, into that list, as I cooked and diaper-changed and disciplined and figured out feeding tube stuff.

God really met me in a special way as I prayed for ideas (these were really fast, desperate, on-the-run prayers).  In my tiny claustrophobic condo, I needed to be reminded of God more.  So I, firstly, put up signs with verses.  These visually remind me of where my thoughts ought to be and of God's amazing plan. One of my very favorites says simply, "Abide in Him."  Abide in Him.  I remember a specific moment when I was particularly flustered in my motherhood journey and had just lost my temper with my kids.  I walked the 5 steps from their bedroom and around the corner to the living room, leaned my head against the wall, looked up.......Abide in Him.  It's like a teal whispering every time I look that direction.  Abide in Him.

A second way God led me to integrate worship was to put my hymnal on a stand right next to the kitchen sink.  I specifically chose that location.  For some reason, washing dishes was where my mind would start to wander in judgement, criticism and self-pity.  I hated washing dishes, and maybe this was why.  It was my angry spot.  But now, if I'm not singing a song and my mind starts to wander in the wrong direction, I intentionally avert my eyes and mind to the words in the book- "Holy, Holy, Holy, Lord God Almighty-early in the morning my song will rise to thee."  Not only have I become less resentful and angry, but I've grown closer to God in singing these old words and my kids occasionally burst out in something amazing ("This is my STO------RY, this is my song!).  My angry spot is now my worship spot.  That's the kind of thing God does, the great heart-changer.

Lastly, because I felt so completely desperate and helpless, my prayer life increased ahundredfold.  I wasn't on my knees for hours on end-no-not a chance.  I didn't have that time.  But I was folding laundry (prayer), sweeping the floor (prayer), talking to Doctors (prayer), hearing my baby gag (prayer).

The list.  I write it out to remind myself that, yes, it is a lot-but it could be more.  Yes, the load feels heavy at times.  But also, yes, God is with me right in the middle of it all.  And, to remind myself to continue in the lessons He's so firmly taught me - to Abide in Him, to worship in the tasks He has given me, and to pray continually.  To know that the last two listed - spending quiet time in prayer and reading my Bible - are worth fighting and sacrificing for.

So, now that things are back to "normal,"  we're not missing church anymore.  Corporate worship is so much sweeter now that I know Jesus a little better.  I remember trying to live, walk, breathe worship before, but until the rug was yanked from beneath my feet, I didn't really get it.  Not that I do it all the time now.  Nope.  It's still a struggle and a battle.  But now I get it.  I've lived it.  I know it. 
And that's the gift of these last 18 months.

Done

I was done.  Really done.

I lay in bed, thoughts swirling tumultuously – Oh, to drive away and keep going!

 I just wanted it all to stop: the kids, the husband, the life.  When I looked towards them:  they needed something.  Always.  When I looked towards him:  he suffered pain.  Always.   When I looked towards myself:  insufficiency.  Always.

In my mind, I drove away.  Over and over again.  I ran away and left because I wanted quietness and peace and I knew they’d be better off anyway.  Too bad, even in my imagination, that every destination was wrought with its own set of overwhelming problems.   I had to get a job or help other people and still shop for food and cook it. Nowhere could I go and just be.  Just sit.  Just be worthless. 

So I didn’t drive away, but I felt sad.  Really sad.  These life problems – too much!  I felt the sting and disappointments of the cards I’d been dealt.

After two long nights of horrible, torturous thoughts, Sunday morning dawned.  I awoke defeated and stonefaced.  I’m too stubborn to ever quit, but that’s what I wanted.  These thoughts of overwhelming worthlessness had agonized me long enough.  I knew they were not of God but felt so trapped.  I also knew that I needed prayer and council and quick!  I’d been in that same spot almost exactly a year before and James had sent me to some rejuvenating solitude, but this time I felt that I needed some listening people ears.  I prayed that our mentors would be in town that weekend, that I would see them at church (not a given in a megachurch), and that they would offer to talk to me that day.  And so, as I stood, they walked through the door. I got to the point and told them I was barely holding together and please, could they talk with me soon?  Yes!  Yes, they could!  How about Tuesday?  Or Wednesday? I don’t remember the days, really, I was crying.  How about today?  YES!  TODAY!  God answers prayer.  God loves me, even when I’m not looking in the right direction.

A pivotal day.  A praising Jesus day.  A day that they sacrificed to listen to this hurting girl.  And I told them everything.  James sat in the other room while I told them all my sadnesses, all my recent sins.  I poured it all out.  The bittersweetness of life, the unknown roles, the expectations, the exhaustion, the tension, the resentment, my critical heart and the darkness of the days ahead.

And here’s the thing.  As I sat, drinking my water, and soaking in their council, I realized that they did not tell me that I was doing a great job and that things would get better soon.  They didn’t tell me that my husband was wrong, or my kids.  Who they pointed to, gently albeit, was me and Jesus.  My time spent with Him.  My time listening to Him.  A verse to replace the lies.  And the great importance of recharging, of not making excuses against rest until I felt insane, was insane.

I’d lost it, nearly, for lack of rest; physical and spiritual. 

For lack of wisdom in knowing the right time to stop. 

For lack of ability to push past the feelings of guilt in needing time for myself. 

And, in not taking that time, I’d made a hard situation worse. 

In these last couple weeks since I broke, God has been faithfully prodding me onward with His love.  More than that, He’s been lifting me up.  I’ve received letters, and phone calls, and other encouragements from people.  The sermons and talks have been exactly what I needed to hear.  My humble, loving, open and willing husband has been praying for me and our relationship has a renewed breath in it.  Everything that I’m hearing each day seems to have a synchronized tone of stopping, resting, being.  Of course it’s God telling me this.

In a way it’s funny.  In my moment of desperation, I wanted to stop and rest to be, and I could not although I was shutting down.  It’s also beautiful.  God has given me my heart’s desire although I have only slightly slowed.  

Moses asks, “Who am I, that I should [do this great task]…?” and God does not directly answer his question.  He responds, “I will be with you” (Gen 3:11-12).  Does it matter who I am or am not or how great the task at hand is when God is with me? 

Lamentations 3:19-23 says, “I remember my affliction and my wandering, the bitterness and the gall.  I well remember them, and my soul is downcast within me.  Yet this I call to mind and therefore I have hope:  Because of the Lord’s great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness.”  This verse keeps coming at me.

James and I have set in place a survival plan, more than that, it’s a living life well plan.

* Thursday nights have become sacred.  One or the other of us has the evening off, completely off.  It’s my Thursday today.  I think I have anticipated this lifeline evening every day for the last 11 days.  

*James has declared a night where we debrief and check in with each other. 

*We keep each other more accountable for time spent reading our Bibles.  

*And less distraction of screens!

Am I the only one out there who forgets to stop?  Who hits the wall once in a while?  Who keeps running so fast that I lose my focus completely?  I don't think so.

My problem, like Moses, was that I was looking too much at myself and the situation.  I was too small and it was too big. 

I became overwhelmed and lost and didn't hear the words that were and are always there.

I AM WITH YOU.

ONE YEAR - Ode to the Feeding Tube

From 7 months to 17 months of her life -  it's been a year.  The day after Memorial Day last year Annika was released from the hospital with her 4 day old g-tube in place.  It's been a year of g-tube and and a year since her last hospitalization.

How grateful I am that I didn't know, and don't know, how long this tube would be/will be with us.

But a year seems worthy of commemoration and I haven't written much about daily life with a "tubie," as they say, and so now I bring you both the accolades and the trials - a little glimpse into the grunt happenings around our place.  Some of it might make you queasy, if that's your way.  Also, this is also a very long account.  Consider yourself forewarned.

Let's start with g-tube 101.  It is a "button" which is surgically placed.  The external side you can attach a feeding tube to, and the internal side has a little balloon that is filled up with 4-6 ml of water.  It is an open wound that I change gauze on daily.  I never understood a love/hate relationship so well until I met our little g-tube attached to my failing baby.

There are a few obstacles to be overcome when you're feeding a child through a tube.  First of all, the baby has a little 12 inch length of tubing with connects to her little button and this connects with the tubing from the pump.  Now, the tubes have to be able to pull apart from each other because otherwise her tube will come out completely from the site - and that's no good.  But it's also no good if they get pulled apart because suddenly the pump side is "feeding" whatever thing it landed on and kid side of the tubing is gushing everything out of the stomach that you just worked so hard to fill up.  Also, the kid side has a little med port, which is really nice when I'm giving meds, but super not nice when Annika flips it open like she does (and, once again, empties her stomach contents over everything).  We have wisened up and we now tape this portion of the tube to her back if she's feeding during the wakeful hours of the day.

Second obstacle.  The pump can be time consuming, alarms become status quo, and sometimes they stop working completely.  Our old kangaroo joey jammed up all the time.  I spent my life trying to unjam that silly thing which usually didn't work out and so I had to unthread the bag, get a new one, and prime everything through again.  This sounds really fast when I write it.  But it wasn't.  And if the baby was hungry or the other kids needed something....well, you get the idea.  I remember working with it one time when we thought we might actually make it to church on time but then it started alarming and we had to pull into a side street and a cop drove by us a couple times, I don't know why but I guess we were okay, and the kids were sitting there patiently because they were already used to it and we didn't make it to church on time.  This was, and is, a typical story (the late to something because of the pump part...not the police part).  Although, I'm happy to say, it's happening less often these days.  Anyway, it can jam because a glob of formula is stuck or there's a kink/twist in the tubing somewhere or I forgot to unclip the clip on Annika's part of the tube or it's not sensing the food or it was fed some air.  The joey didn't care about air.  It fed it right to Annika which was super fabulous when she was vomiting all the time and wasn't able to burp because of her Nissen surgery for her reflux.  FYI-we like our new pump better.  Get a zevex.  Lastly, if the thing decides to die on you, you get to call the medical equipment provider to send one out to you stat.  I think we're on our 4th pump.

Third obstacle.  Ignorance.  We had no idea what we were doing when we first got this thing.  I mean, the basics, but no idea.  And I really had no brain to think of anything on my own and I didn't want to read about feeding tubes because I was touching them all the time and I thought my doctors would have told me anything I needed to know.  In retrospect....wrong!  I finally had an urge, sometime last fall, to find some connection with others who lived with these things every day.  I found feedingtubeawareness.org which led me to message boards, blogs, and stories of kids who had been weaned from feeding tubes.  It encouraged me, gave me hope, and educated me.  I learned about how to mix the formula I'd been using in a way that wouldn't jam the pump.  I learned that I could use ice packs during the longer daytime and night feeds so that I didn't have to get up every four hours, but only at the finish.  I learned that I should be using medical tape a LOT more.  I learned that we were in a good, good place and that there were so many others with less hope.

Fourth obstacle.  The button can come out completely.  When this little one was learning to crawl and before I realized the great benefits of medical tape, she pulled her button out of her stomach frequently.  Frequently!  I remember one day it was 3 times-but that was excessive.  So, when the button comes out, you have a hole in your child.  You must lay your child on her back so that the stomach contents remain stomach contents.  You must tell your 7 year old and 5 year old (then only 4) that you have an emergency and they go, wash their hands, and get the necessary supplies (gauze, syringe filled to the 5-6 ml mark with water, water-based lubricant, and a new button if the old one looks gross).  Your 2 year old (now 3) is hopefully behaving himself.  You then reinsert the tube and fill it up with water.  Sometimes it's hard to get in and the tube bends and she's crying and it's really sad for her and you - but better than letting some doctor do it.  Other times it goes right in and she looks at you like she's unsure if she should cry or not and she's surprised that she's not.  But you make a funny noise and she laughs it off.  One time the button came out during the night and the hole was too closed for me to reinsert in myself which meant a trip to the ER where they checked us in and then checked us out soon after and sent us upstairs to the surgeons office where he used smaller to larger metal pokers to distend the hole back to size.  It was horrible.  And it was without anesthetic.  I hope it never happens again, but if it does, they will use anesthetic!!!

Fifth obstacle.  The child wants to be mobile but she's connected to a machine.  This was especially sad when I didn't know there was a backpack and she had to be attached to the IV pole all the time.  The transition to backpack was wonderful - but it had to be upright or it fed her air (and she was moving all the time so how do we always keep it upright?) and it was too heavy for her to carry herself.  Therefore, I have spent a lot of time this past year holding Annika's backpack while she plays.  This takes great skill and maneuverability.  :-)  When we switched pumps, things got even wonderfuller (why not?!) because it was lighter, the backpack was smaller, and the pump could be turned different ways without feeding air.  Really fabulous!  She was carrying it around on her own superbly, but then she fractured her arm falling down some stairs the day before Easter.  It was just too sad to see a little 16 month old with a full arm cast carrying around her own feeding tube bag.  But the cast came off 10 days ago, and she's been off and running with her little backpack again.  There are times when she does not want to carry that bag around and she thrusts it at me in frustration and I either follow her around with it or call a kid to be on "Annika duty" for the remainder of her feed ("The worst part of my day!" says Isaac.  Adela likes it, though).  All three of them are so good with her in general.  When they see that she's pulling at her tube because she's left the bag behind, it's become almost second nature for them to carry the backpack over to her.

For most of the year, Annika has been on a strict feeding schedule of every three hours during the day in order to meet her weight goal.  So 7, 10, 1, 4, and 7 we measured, filled, primed formula through the tubing and started the feed.  When she  finished, we cleaned out the bag with water and flushed water through the tubing.  This is time consuming even when you don't hit a glitch.  That was our process May 2013-February 2014.  Around February, we received our new pump AND I read somewhere that we didn't need to be rinsing out the bag every time but can just take it out from the pump and store it in the fridge between feeds.  None of the nurses or doctors told us this option, but it's a discovery that has revolutionalized our lives!  Now I don't have to measure because I can program the pump.  I can fill that little baggie up to the brim in the morning and just use an ice pack throughout the day and/or throw the bag in the fridge.  And to make things better, Annika now has only 2 feeds during the day because she's now getting most of her calories at night so that her daytime appetite will pick up (and she's swallowed a little bit more...I do think it's helping).

Her feeding speed has varied, but has averaged at about an hour per feed...so she's been essentially an hour on and two hours off.  Unfortunately, back when she was vomiting so much, when we felt that she'd lost most of the feed, we'd start over and the 3 hour count would change times - also the speed would slow so that she was connected to the pump even longer.  And then there were those days, I thankfully can't remember even the month, when she was on continuous feeds for 20 hours a day because she couldn't tolerate more than an ounce and a third each hour.  The speed of her feed is always changing.  When she's sick in any way, she tolerates less (vomits more) and so we have to slow her down again.  It takes a few weeks to work up to the speed she was at before the sickness.

One of the things we do is "vent" our baby.  Most people burp their babies but we attach a large, empty syringe (with the "sucker" part pulled out) to our baby's tube in order to vent the air out.  Sometimes it bursts out in bubbles, sometimes it makes an actual burping sound, and sometimes it simply vents and you can't see much.  Venting happens a lot more often on those sick days when I do it every 3-4 hours.  Normally it's once a day and, lately, I've not been doing it at all because Annika has started to burp and she doesn't seem to be uncomfortable.  We can also use this same method to take food out of her stomach if she's looking green or if we need to see how much she's digested (which we did a lot in those first months when we were figuring it and her all out).  It's important to hold on tightly to the connection between the syringe and the tube because if you don't and she makes a quick move, you might suddenly shower yourself with partly digested formula.

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As for now, my day looks a little like this:

2 or 3 AM - shut off the machine. untape, disconnect and flush out the tubing.  (James and I switch off nights)

8 AM - put Annika in her chair and try to feed her breakfast.  she's usually not interested but if we cheer a lot she will take a few bites.

10 AM - put Annika down for her nap and give her a dose of stomach emptying medication.  after she's asleep, sneak into her room (my room!) and attach her to the tube.  the child is used to this and so it usually goes well.  after the feed is done and the alarm beeps, sneak in again, flush the tubing, sneak away. she gets about 5 ounces over around 35 minutes time right now.

12 PM - back in the chair for lunch. she likes to try most things but spits most food out when she's done.

2 PM - another feeding attempt in her chair because she's hungry.

3 PM - another nap and another sneak into the the bedroom.  i'm trying to do her tube feedings while she sleeps so that she doesn't associate it so much with satiating her hunger.  we want food to have that association.

6 PM  - dinner time and more chewing

8 PM - a couple more medications (stomach emptying and reflux). change the gauze around the site. vent her (if needed). put her to bed.  change the settings on her machine to a slower night feed (2 1/2 ounces per hour).  tape the med port shut and use a clamp to hold the tubing together throughout the night. tape all of that together too because Annika chews it apart.

10 PM - check everything before going to bed to make sure she's not twisted or leaking anywhere.  adjust and/or change sheets if necessary.
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All of this might look like a lot, but it's so much less than it was and I'm starting to feel like we're more of a "normal" family.  Yes, the time it takes to care for Annika is still more than your average baby, but the gap has lessened substantially.  Hallelujah!

With every darkness there's at least a spot of light.  At first, I thought there was only a smudge of brightness to be seen, but now I'm seeing more and more the shining beauty that has come from this.  Firstly and practically, at times it's lovely to have direct access to your kid's stomach.  When she doesn't want to take her medication by mouth - down the tube.  When she's sick and getting dehydrated - pedialyte down the tube.  And, most importantly, when she will not eat (which is why she is a tube fed baby in the first place) - food, down the tube!  And this baby is growing and developing and exploring like every other little 17 month old and she's vivacious and chatters away in her own language like anything.  I shudder to think of how she would be without the tube, and wonder if she would even be with us anymore.  I'm not at all certain.  Actually, I'm more certain that she wouldn't be.

The brightest point of having a feeding tube as part of our lives is the transformation that has occurred in our family.  It's been a process with lots of groanings along the way.  But, ultimately, we've had to learn patience - so much patience.  We've learned to cherish one another more because the reality of each temporal little life has sunk deep.  We've learned to embrace the sufferings that come our way and to trust that God has a reason for the pain in the big painting of eternity.  We've learned the importance of stopping, resting, and rejuvenating.  For many, many weeks I was unable to attend church.  I've learned how to incorporate worship into the every day and it makes my heart leap to hear my little children singing out random praise, "This is my stooooory!  This is my song!  Praising my Savior, all the day long!"  We are not close to perfection - as none of us can be this side of heaven, but it's a beautiful thing when you can see the fingerprints of God all over a situation which felt so distant from Him only months before.

As I write this out, it's difficult not to add in everything else that went along with the story, because the feeding tube is only a part of it.  There's also the vomiting and heaving and record keeping and doctors appointments, the oral attempts at feeding and, really, everything that led up her getting it in the first place.  And there is the endless line of people who have embraced us.  But all of that is in a different post for a different day-some of it already written.

Thus ends my tribute to the horribly beloved g-tube. We give thanks to God because He has given man the inquisitive mind to explore and to learn about this complex body He has created for us.  We thank Him for giving our family the opportunity to experience the life of a child who wouldn't have had a chance a century ago.  And we thank Him for the breath of life we breath today because who knows what tomorrow holds?  We do not know.  But we do know that we are so very blessed!

As are you.  Praise Him!



This has been a theme song this past year:

https://www.youtube.com/watch?v=KNYnXwkWrnw

 Psalm 139

1 You have searched me, Lord,
    and you know me.
2 You know when I sit and when I rise;
    you perceive my thoughts from afar.
3 You discern my going out and my lying down;
    you are familiar with all my ways.
4 Before a word is on my tongue
    you, Lord, know it completely.
5 You hem me in behind and before,
    and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
    too lofty for me to attain.

7 Where can I go from your Spirit?
    Where can I flee from your presence?
8 If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
10 even there your hand will guide me,
    your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
    and the light become night around me,”
12 even the darkness will not be dark to you;
    the night will shine like the day,
    for darkness is as light to you.

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
17 How precious to me are your thoughts, O God!
    How vast is the sum of them!
18 Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

Throwback

Last night and today have been throwback days to the days not so long ago.  It's amazing how quickly one adjusts and adapts.  I've barely written about the going's on's around here because it's become so normal to us that it feels like it must be mundane to everyone.  But then I step back and remember that not everyone feeds their kid through a hole in her stomach and I remember the days when I didn't even know what a gtube was.  A year ago.  Wow.  A year ago we were still in the midst of determining the why's of her failure to thrive diagnosis and I was in agony over the thought that I was starving my baby in spite of my best efforts.  One short, eternal year ago.

So today.  We have vomiting in the house again.  It's wild.  This baby vomited until it was normal and a non-issue with her pediatrician.  She vomited more when she was sick or had an infection or whatever.  But suddenly, mid-December, her little sphincter decided to shape up or something and - without any notice (she could've warned us!) - she stopped vomiting.  I carried around the vomit trays for a while and....she really stopped.  So I put them away.  The carseat cover rejoiced.  I held my breath for a while and then slowly exhaled.  Maybe this is to stay??

I've really been soaking in the glories of a life with more than laundry and vomit mop up.  We've done more grocery shopping during the day (because it's awesome with four kids!), the mornings are busy but no longer hyperventilatingly so, we've made it to church (although 'on time' has yet to be perfected), and we even managed a field trip to the science center last week.  The freedom is exhilarating!!!!!!!!  Admittedly, we still spend a lot of time in our condo/cage, but at least the option to go is usually there.  That, in itself, is worth gold.

But now we have a bug.  It started with kid #3 and moved down to kid #4.  Of course.  Elijah can't resist a grab and a jab and a poke and a suck at her pacifier.  He's neurotic about it.  Poor Annika.  Didn't have a wink of a chance.  So, in the middle of the night, she starts gagging and heaving like she used to do, and I'm out of practice so I stumble out of bed a little too late and grab at the stack of vomit trays which is stuck behind a big vacuum-sucked bag of blankets and I wheel to the left, swoop down and catch the last splash.  Better than nothing, but a fail.   Vomit on her bed and her sleepsack and her jammies and on her legs and my arms and a little bit in the vomit tray.  I'm ashamed of my performance.  After all those months of practice!!!  After two more sets of jammies, new sheets for my bed, (yeah, I missed again when I was washing my hands), some more throwing up in the sink, wiping of smelly skin and diaper changes, we land back in bed an hour later.  This really is so 2013.

But the thing that gets me is this.  I pull her out of that crib and I'm rocking her, holding her, telling her it's okay and directing her towards the tray - and that vomit smell brings me back, and the closeness of comforting her pulls at my heart, and somehow I weirdly miss it.  In my defense, I will say that milk vomit is sweeter and lighter than food vomit, but I wouldn't call it lovely or desirous and I wouldn't recommend it as a wearable scent (although I confess, I've done that too for longer than I'd like to admit on those days when it seemed pointless).  It's all very strange.  How can I miss a stench?  Or any of it?

Association.  That smell, it brings me back to the hospital and the heart and the early mornings and the tiny, confusing baby.  My bedroom, my house had that scent.  I'd open the door to pick up Annika from her nap and the scent greeted me first.  My car often carried it, and I carried it wadded up in plastic grocery bags in the diaper bag.  It became the scent of little Annika.  And as I held her last night, I missed my baby, because she's probably my last and now she's all grown up into a 14 month old who runs and says "uh-oh" and who sings "Les Mis" and who doesn't need Mommy quite so much.

I know I'm sentimental.  I hang on to mementos of past days for too long - like my 8th grade t-shirt and tie-dyed track shirt.  I'm not going to bottle any eu de vomit up for future whiffs.  But I guess it makes the sick days a little sweeter because they bring me back to the whirlwind days where my strength could not be my own, where my knowledge of God and love for Him grew, and to the feel of a tiny baby head nestling against my cheek.  And I am reminded of the hope and the prayers of all who uplifted our family.  My baby is gone.  She's been replaced by a sweet smelling toddler.  But, oh - the memory of. . .the knowledge of. . .the comfort of. . .and the assurance.. . .of sweetness and change rising forth from the stench.

The Sacrifice of Love

There were times this past year when I felt crazy.  I was doing the same thing all the time every day and it was more than I could do.  I was dizzy from walking in circles in my tiny condo as I fetched this or that to care for Annika and to maintain her feeding tube.  Ever changing was her feeding schedule, profuse was her vomit, and mysterious were the reasons for her decision to stop eating.  So many questions and changes.  Stuff like this can drive a person mad.  I've heard of it.  And it could have been.  Really.

But I know that God, in His grace, surrounded us with an amazing network of supporting friends and family.  I remember so many meals brought to us-or hearing about them when I was away-for 2 1/2 solid months!  My Mom came twice and stayed long when we were desperate for help.  My Mom-in-Law jumped in and took the 3 for one night each week for 4-5 months so they could get attention and excitement when I could give them little.  My Lovely Neighbor brought lots and lots of cookies, and dinners, and took the kids on a few occasions.  One Dearest One did Costco runs when our fridge was bare and I couldn't get there.  Another Sweet Family cooked extra so they could store up food in their freezer and bring us an occasional cooler full of emergency dinners.  And yet another Kind Friend took me away for the evening and treated me to a massage.  And we've received so many surprises: $ for dinner, a devotional book on suffering, encouraging notes and verses and texts and facebook comments, more $ for more dinners, and a gigantic surprise Costco gift card so that-now that I can go there myself- we can have pizza every night for the next year and a half.  We were given $ for a house cleaner and more $ for a house cleaner and more $ for whatever so I called the house cleaner.  $ from my Grandma to help defer the costs of doctor co-pays and gas to get there was a huge blessing.

People responded in overwhelming ways when Annika first was diagnosed.  The facebook posts were through the roof, and that was partly what knocked into my head the gravity of the situation.  We didn't get out much, but when we did there were smiles and hugs and pats on the back and listening ears.  And there were phone calls galore.

And at the moment when I really did start to lose my mind, my Dearest Love (who is the strongest of the Strong) commanded that I should GO and have an entire night of quietness and solitude and no Annika with her beeping machine.  That night saved a lot in me.  It allowed me to pull my thoughts together, to lay my complaints before God, and to sit - just sit -as He spoke to my heart.  A healing balm soothed my soul as I read my Bible and released my anger.

I write this because I want to remember.  I want to remember how it felt to be loved and how to love well.  Love doesn't just hope and aspire but it takes action and does.  Love is not always easy.  To Love is to look outward, not inward.  How many hours were spent making and driving food to my family?  How many sacrifices were made to give us money in our darkest hour?  How many thoughts were thought and put into action?

Suffering and the Journey

John 15:1-4 “I am the true vine, and my Father is the gardener.  He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful.  You are already clean because of the word I have spoken to you.  Remain in me, and I will remain in you.  No branch can bear fruit by itself; it must remain in the vine.  Neither can you bear fruit unless you remain in me.”

Suffering.  It’s everywhere.  You turn on the news and most of what you hear involves suffering.  Even when we don’t suffer, we think we do, as my 7 year old demonstrated recently in his loud lament that he would never receive a hard-boiled egg-that he would be forgotten and hungry-just because he was third in line.  Or when that guy won’t let us over on the freeway and we miss our exit.  Or when we turn our back and the dog jumps up and eats our lunch.  And that head-cold that won’t go away, the second one this year!  We bemoan and groan and complain about unfair circumstances in all our selfish glory.  Why do we suffer so?!  And then real suffering embraces us, kisses us on the cheek, when we least expect it.  It’s the trademark of this fallen world.  Oh, then!  How we laugh at the pettiness of yesterday and it doesn’t matter anymore if the line is long or the hair dye is the wrong color.  A new perspective settles in.  But we can’t help asking - Why???

I can’t say that I’m a suffering expert – no.  Far from it.  But I’ve had my days, even seasons.   Loss.  Death.  Sudden and unexpected.  Why??  Test results that were positive when I’d hoped for negative.  Suddenly, in a moment, the future stripped away.  Changed.  Unexpected.  For all of us.  You really would, God?  Why??  When we’d already lost so much that month…our sleep, our health, both of our cars, one because of an accident - I clung to the comfort that our baby, still tiny and forming, my God of mercy would not take.  But He did.  Why??  Changed.  Unexpected.

In November of 2012, just before our smallest one arrived, I mused and wondered aloud to James - what we would do, how it would be, if our baby were to have circumstances that would keep him or her in the hospital for an extended amount of time?  But it was a vision, a wonderment that would not, could not happen to us.  We were too normal - stuff like that didn’t happen to us.  Besides, James was on the cusp of graduating from seminary and we were going to finally go and to serve overseas after years of prayer and hope.   I’d heard the stories - those “missions-stopping circumstances” ones, but those were not us.  We were on the “missions-going” track and it was a straight line and the whistle was about to blow!  Finally!  Oh!  The anticipation!

And then it happened.

That night in March when they looked at my tiny Annika in the ER and so casually talked to her in their baby voices, "You're too little and too cute to have CHF, aren't you?"  CHF.  CHF, what?  Congestive Heart Failure?!  No one had said those words to us.  But they kept on saying it in passing as if it were a hangnail.  Oh, the throat constricting panic as I clung to her less than 9 pound body.  The agony as we waited in the room, minutes snail-pacing by as we waited, waited for the diagnosis behind her swollen heart – that discovery only hours old.  I crumbled, outwardly and inwardly, but she showed her two and a half month old strength as I stood her on my knees and her face shone with happy pride.  My broken heart broke more and tears streamed down my face as our eyes locked and I tried to hold a smile.  Could it be so?  Could this child, who looked so like the other three and who beamed with joy, could she really have a failing heart?  Would it fail completely?  And when?  And how - how could we bear it.  How could I?  How could she?    

It was a new place for me.  Changed.  Unexpected.  But it was real.  Happening.  It wasn't going away.  From what I’d read, there was little good news when it came to a swollen heart.  The diagnosis possibilities started at serious and ended at terminal.  The ultrasound technician finally arrived.  And then, I couldn’t stay, didn’t want to hear, wanted a few more ignorant minutes –those last unknowing moments.  Because knowing could be worse!  The babe slept on the bed in peace and James calmly sat, so I slipped away to the bathroom to stretch my arms high and to make my Hannah plea-

"She is Yours!  You created her.  You know the number of her days.  But - Oh God!  Let them be many with me!  I want her!  Dear God, let me keep her longer!!!  She-this precious gift-please let me keep her!  You gave her, please don't take her away.  I cannot imagine you taking her, but I know that you could, that you might, because I remember before, when you did.  I promise – God - I will raise this baby to know you and your Word, Lord.  God?!  Please say yes.  She is Yours, God, but I pray – as I’ve never prayed - that Your will would be to grant me the gift of raising this little life."

And in his grace, he quickly answered, “Yes.”  At least, the diagnosis was hopeful.  As I walked into the room, James said, “It’s good, Chrissy.  It’s good.”  For where we were, it was.  A Ventricular Septal Defect, or VSD, is a hole in the heart and one of the most common heart conditions to be had and, many times, these holes will close on their own without intervention.  Hallelujah!   

Annika was admitted immediately to the hospital.

And thus began our unexpected, unplanned journey into the world of medications and syringes and stethoscopes and doctors and therapists and hospitals and procedures and decisions and tubes and bottles and machines and poles and noises and scheduling and nausea and vomit and more laundry than ever!  Ventricular Septal Defect, Coarctation of the Aorta, Bicuspid Aortic Valve, mitral valve stenosis, echocardiogram, ekg, angioplasty, heart catheterization, NG tube, G tube, electrolytes, BNP, nissen fundoplication, reflux, bolus, vent, 30kcal, prevacid, erythromycin, and enalapril.  It’s a whole new language, and before this year, I spoke it not, but after an involuntary crash course in nursing I can now catch and measure vomit, change two different types of feeding tubes, mix formula in four different concentrations, listen for stomach fluid with a stethoscope, keep track of and dispense 8 doses of medication each day (down from 11), and am learning the ins and outs of feeding tube maintenance and methods.  I am learning how to teach a baby to eat who won’t eat.  If I have a question for the Surgeon or her GI Doctor, I can text them any time.  A new life.

And it’s been so running, running busy.  A fast-paced marathon.  The end of February marked the starting line, and in only three months’ time, we went from failure to thrive, enlarged heart, five nights in the hospital – another heart discovery and low sodium levels led to 15 more nights in the hospital where she had a heart catheterization and angioplasty.  She retained too much fluid, was thrown into severe heart failure, had an NG tube placed and all the while gagged, and vomited, and refused the forced bottle, while I longed to nurse her, but was not allowed.  Five more nights in the hospital gave us surgery resulting in a G-tube and a procedure to stop her reflux.  And then she stopped eating.  Completely refused.  That was the end of May.

I can barely describe the raw emotion of all of this.  The ever empathetic sadness of watching her suffer through the needles poking almost every day – watching as different nurses struggle for over two hours to find her tiny vein for an IV, watching as they wheel her away for surgery, watching as she awakens from the anesthetic, watching when she wants to nurse and is not allowed, watching when I accidently bump her raw tube site and she screams and through all of it she panic looks into my eyes with questions and pain.  Sadness, as she heaves and gags and chokes every day and I comfort her with kisses and hugs and a vomit tray but I cannot take it away.  Jesus loves me, this I know, for the Bible tells me so.  Little ones to Him belong, they are weak but He is strong – more meaning than ever before.  The losses sapped at my heart as I watched my supposed healthy baby be torn from my arms and replaced with a sick one, ever connected to cords.  Even greater was the loss when I was forced to wean her at 3 ½ months because she needed more calories.  And I yearned after my other three kids.  I did all I could for them, but I felt as though I only glanced at them as through a window because there was little time to spend with them as I rushed by.

All of this in a walking state of sleep.  In the hospital, the nurses came and went.  Not me.  I had to be “on” all the time.  Never have I known such weariness.

And then I’m home.  A new life.  A changed life.  Yet another problem found with her heart, the timeframe ever lengthening before she will be okay.  Still tired and going, always going.

And I didn’t have much time to ask before, but here we are, God.  Why??

The ministry of before - that life I can barely remember full of Missions Board, MIT, Bible Study, Casa Teresa – Gone.  And the future we anticipated, serving in overseas missions.  Gone in the foreseeable future.  

Why??  Wasn’t I doing it for You?  And I wait for some explanation, some sign of goodness.  Why?  WHY?  I’m stuck.  Stuck in the why’s.  Waiting.  The trouble is:  the answer may not come.  And I sit there.  And nothing changes and the suffering continues as my heart wilts.  And my why’s turn to rancid bitterness at the unfairness of being dealt this lot with no explanation. I spiral down each step.  The stench!  My sin.  It’s bigger than ever.  And the bitterness turns to anger as I fume and shake my fists at the God who saw it all and knew from the beginning and still allowed it to happen!

And now the problem with my sin.  As my anger grows my patience thins to nothing I watch the anger multiply in those little ones around me.  They begin to kick and rebel and cry out at me as never before.  My own heart reflected back and magnified times three.  But I’m so raw.  How do I help them?  How can I show them?  It’s a dark place.  I can’t.  I can’t.  I can’t.

Suddenly, there’s a nakedness to it all.  I’m standing there and they’re all needing me desperately, reaching out, grabbing me and I’m standing apart reaching up and crying out louder still to God because I need to be filled and I’ve given everything that I have.  Clenched fists open wide in surrender.  All that I was, is no more.  All that I thought would be, cannot.  I’m alone.  Right now.  Right here.  I am stripped of all pretense of security.  All I held to, apart from the God I angered at, either holds me in bondage or leads to nothing, and so I let go.  Strength…I have none.  And I give up.  I’m left with only myself and God.  And, though I wonder at and question Him, I will not give up my God!

A whispering in my ear, for I’m ready to hear those words hidden in my heart:

“My grace is sufficient for you, for my power is made perfect in weakness."  2 Cor. 12:9   

“He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”  

Isaiah 40:29-31

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.”  Proverbs 3:5-6

“Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.”  Psalm 46:10

“Wait for the Lord; be strong and take heart and wait for the Lord.”  Psalm 27:14

It’s time to embrace what God has for me and to stop asking “why.” It’s time to trust.

“Consider it pure joy, my brothers, whenever you face trials of

many kinds, because you know that the testing of your faith

develops perseverance.  Perseverance must finish its work so that

you may be mature and complete, not lacking anything.”  

James 1:2-4

“And we rejoice in the hope of the glory of God.  Not only so, but

we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”  Romans 5:2b-5

My questions, bitterness and anger dissipate as I confess my sin and He throws it as far as the east is from the west.  “My sin, oh the joy of this glorious thought, my sin not in part, but in whole, is nailed to the cross and I bear it no more, praise the Lord, praise the Lord, Oh my soul!”  I run up and away from those steps of sin and approach the upward stairway of perseverance, character and hope.  And I remember!  Out of the darkness, I remember His past goodness and His faithfulness.  I embrace Him with thankfulness because He has lifted up my discouraged head.  The suffering remains, but I’m ready to stand the test with joy, eager to receive the crown of life.  The Doctors and nurses – my hope is not in them – On Christ the Solid Rock I stand!  He can.  He can.  He can.  And He will.  Why did I wait?  Wait on the Lord, yes, but wait for His goodness in hope, not for an explanation.  Who am I to question the maker of the Universe?  Who is this boxed up, commandable God?  No God at all!

Job 9:2b-14 “But how can a mortal be righteous before God?  Though one wished to dispute with him, he could not answer him one time out of a thousand.  His wisdom is profound, his power is vast.  Who has resisted him and come out unscathed?  He moves mountains without their knowing it and overturns them in his anger.  He shakes the earth from its place and makes its pillars tremble.  He speaks to the sun and it does not shine; he seals off the light of the stars.  He alone stretches out the heavens and treads on the waves of the sea.  He is the Maker of the Bear and Orion, the Pleiades and the constellations of the south.  He performs wonders that cannot be fathomed, miracles that cannot be counted.  When he passes me, I cannot see him; when he goes by, I cannot perceive him.  If he snatches away, who can stop him?  

Who can say to him, ‘What are you doing?’  God does not

restrain his anger; even the cohorts of Rahab cowered at his feet.

How then can I dispute with him?  How can I find words to

argue with him?”

And, in spite of my resistance, He embraces me and woos me and whispers words of Love:

Jeremiah 29:11-14a  

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.  I will be found by you.”

When I seek Him with all of my heart!  God is not a half-way God, or a God of conditions.  He is the Loving, omniscient Creator who works through it all for His good purposes.  In the beginning, my faith in God’s healing power was so, so mustard seed small and riddled with doubt.  But now, after watching all the trial and errors made by man, I see with stark clarity that we are mere tinkerers with the wonders of His creation.  He is the great physician.  I trust Him more than ever.  As I have grown smaller, He has shown Himself greater.  Nothing can stand in the way of His will.  If He still wants us to go serve Him overseas, healing Annika is nothing to Him.  He will do it.  Also, I’ve wondered why He redirected our path, and then I remember that He didn’t.  I only thought He did.   

The path I’m on is exactly the path He destined me to walk.  There’s a peace in that knowledge and utter trust.  I love how Joni Eareckson Tada puts it when she says, “As my friend and mentor, Steve Estes, once told me, ‘Satan may power the ship of evil, but God steers it to serve his own ends and purposes…God permits what he hates to accomplish what he loves.’  I can smile knowing God is accomplishing what he loves in my life-Christ in me, the hope of Glory.  And this is no Plan B for my life, but his good and loving Plan A.”

Psalm 77 beautifully speaks to suffering.  It echoes my heart.

“I cried out to God for help; I cried out to God to hear me. When I was in distress, I sought the Lord; at night I stretched out untiring hands, and I would not be comforted. I remembered you, God, and I groaned; I meditated, and my spirit grew faint. You kept my eyes from closing; I was too troubled to speak. I thought about the former days, the years of long ago;   I remembered my songs in the night. My heart meditated and my spirit asked: ‘Will the Lord reject forever?  Will he never show his favor again?  Has his unfailing love vanished forever?  Has his promise failed for all time?   Has God forgotten to be merciful? Has he in anger withheld his compassion?’  Then I thought, ‘To this I will appeal: the years when the Most High stretched out his right hand. I will remember the deeds of the Lord; yes, I will remember your miracles of long ago.  I will consider all your works and meditate on all your mighty deeds.’  Your ways, God, are holy. What god is as great as our God?  You are the God who performs miracles; you display your power among the peoples.  With your mighty arm you redeemed your people, the descendants of Jacob and Joseph.  The waters saw you, God, the waters saw you and writhed; the very depths were convulsed.  The clouds poured down water, the heavens resounded with thunder; your arrows flashed back and forth.  Your thunder was heard in the whirlwind, your lightning lit up the world; the earth trembled and quaked. Your path led through the sea, your way through the mighty waters, though your footprints were not seen. You led your people like a flock by the hand of Moses and Aaron.”

Sometimes God’s path and His way leads right through the mighty, raging waters.  Sometimes we don’t see His footsteps.  But we have His Word to guide us and to cling to and the hope and assurance of a heavenly perfection and a future without sin.  And we are changed.  Unexpectedly.  Through the bittersweet beauty of dying to self.

Oswald Chambers knew something of suffering and he cuts to the core when he says, “The first thing God does with us is to get us based on rugged Reality until we do not care what becomes of us individually as long as He gets His way for the purpose of His Redemption.  Why shouldn’t we go through heartbreaks?  Through those doorways God is opening up ways of fellowship with His Son.  Most of us fall and collapse at the first grip of pain; we sit down on the threshold of God’s purpose and die away of self-pity, and all so-called Christian sympathy will aid us to our death bed.  But God will not.  He comes with the grip of the pierced hand of His Son, and says – ‘Enter into fellowship with Me; arise and shine.’  If through a broken heart God can bring His purposes to pass in the world, than thank Him for breaking your heart.”

Perhaps it's time to embrace the suffering that comes my way.  Maybe, even, to kiss it back.

“Finally, be strong in the Lord and in his mighty power.  Put on the full armor of God so that you can take your stand against the devil’s schemes.  For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.”  

Eph  6:10-13