When the Light at the End of the Tunnel Goes Dark

(pics courtesy of our week at home)

I went back to the YMCA today.  It was a step toward returning to my normal routine after spending the last 2 months in the hospital with Maggie.  This last week home has felt like we finally had a light at the end of the dark tunnel we have be traveling down.  That was until yesterday when Maggie's doctor informed us that her effusion was back and I saw that light turn dim.  Tomorrow we will return for another follow-up to determine if she will have to be re-admitted to the hospital. 

It was in between Tae-bo punches, round house kicks, and glances at the clock to see how much longer I had to go that I began pondering how you are supposed to respond when the light at the end of your tunnel goes dark again.  I thought about friends fighting for their marriages and another fighting for her son's future as he moved in and out of treatment facilities.  I remembered a friend who has traveled in and out of remission for cancer and several others whose light to dark circumstances feel far more serious than my own. 

So if that is you, and you too feel like the light at the end of your tunnel is growing dim, I hope you find encouragement in these thoughts.  Oh, and don't get angry with me if you disagree.  Instead, blame it on the oxygen deprivation I was experiencing while starting to formulate my post.  :)

WHAT DO YOU DO WHEN THE LIGHT AT THE END OF THE TUNNEL GOES DARK AGAIN?

1. Keep your focus on the source of the light
I know that sounds like a Sunday School answer and it is hard to check off when you are in the thick of it.  I believe it is important though and needs to be #1 because "the Source of the light", God, is the only One who knows the future.  He is the best source of wisdom and comfort as you navigate the dark road ahead. He is like your Google Map lady when you are lost in the 5th Ward, at night, and can't find your way home.   #Houstonianswillunderstandthat

2. Stop and don't travel another mile until you seek Him first and get direction
A lot of us would like to respond first and pray second but that is not what God calls us to do.  You need to move only when He tells you to move. 

3. In the words of Carrie Underwood, let "Jesus take the wheel" and you take care of yourself for a moment
Self-care is so important when you are going through a stressful situation.  I don't know about you, but if I am not getting enough sleep, exercising, and taking a little time for myself, I don't think straight.  You have to take care of yourself if you are going to be able to move on down the road.  Cars don't drive on empty.

4. Help other motorists along the way.
This achieves 3 purposes: #1 it gives you perspective, #2 it takes your eyes off the darkness, #3 it advances the Gospel where you are.

5. Think about the destination and not the darkness.
When I focus on the darkness, I can come up with some crazy potential scenarios that may not be my reality but the emotional responses they generate are very real.  It doesn't make any sense to picture your child gone, your marriage over, or your some other whacked-out worst-case scenario that is not yours.  Instead, focus on the desired outcome (destination) until your reality tells you otherwise.
 My sister forwarded a great quote to me today that goes with this:

“My life has been full of terrible misfortunes, most of which never happened.” – French Renaissance Philosopher Michel Montaigne

6. Make memories on the journey.

The easiest thing is to wish for the tunnel to be over and the journey to come to an end.  The reality is that time is passing in the tunnel and you don't get that time back when your circumstances improve.  There are still good memories to be made where you are.  Don't miss that opportunity. 

And as a bonus - What NOT to do in the tunnel- Don't pull off the road and give up unless God has given you permission to walk away from your circumstance.  I can say that He rarely calls us to walk away and, more times than not, that is the Enemy talking. 

So there you go for my Tae Bo work out, tunnel driving, no light, yes this can suck, but it doesn't have to be all awful, thoughts on the when the light at the end of the tunnel goes dark.

Life and Poker

I am probably not going to have time to proof read this so please forgive any spelling or grammar errors.  My sweet niece, Paige, is sitting with Maggie and I ran down to get a cup of coffee and return some emails.

Now onto the update.

Maggie went back into surgery yesterday for another chest tube and for a heart cath.  While in the cath, they discovered a narrowing over her superior vena cava.  They ballooned it which is a bit of a temporary fix.  They felt this finding was significant but was probably not contributing to her fluid problem.  They also tested her to see how she would respond to Viagra to relax her venous system.  She responded well to this and this is the path we are testing for the next 4-5 days.

She is still pretty weak today from not eating and the anesthesia but was perking up toward the afternoon after they returned her to the fat free diet and the drugs finished wearing off.  Now we just watch and wait, again.

Now onto the Poker illustration.  There is a little irony in this one too like God was getting me in the mindset for this lesson.

We don't know the doctor who performed Maggie's cath as he was kind of thrown onto the case at the last minute.  When he was finished with the procedure, he met me in the conference room and explained all he found with a perfectly straight face.  Now I consider myself to be a pretty good reader of people's thoughts and emotions and I was really struggling to figure this guy out.  I spoke with a friend afterwards and commented on how this doc had the perfect poker face and I had no idea if Maggie looked terminal or if he felt the procedure was a complete waste of time.

I hung up and headed to recovery when I saw him in the hallway and decided to ask him straight out how serious he thought her situation was.  I wish I had recorded his response because it was one of those stop you in your tracks and make you want to grab a pen and paper kind of answers.

He said, "Maggie has been dealt a short hand but your job as her mother is to help her live her life, however long that is, like she has the full deck at her disposal."  

How good is that!  So that, of course, got my wheels turning like crazy.  I bet 95% of people have been dealt a short hand in one way or another, but we all play the life game of poker differently.  Some people give their hand away immediately and don't get very far in the game.  Others, however, play the game (of life) like they have the entire deck at their disposal, like they have the best hand at the table.  

I don't know about you, but I want to be that kind of life poker player and hopefully I will parent well enough that my children will do the same. 

Thanks for praying. 

From our last few days:  

It seems like a different group comes by every day to bless the kids.  One of those groups was from the FBI.  I am pretty sure the hospital has never been as safe as it was in that hour. :)

A non-profit called Dec Your Room came by and blessed Maggie with a Frozen themed hospital room.  She loves it and that's good because I am starting to wonder if we will ever leave. 

Update

There is nothing deep and thought provoking in this post.  Honestly, I don't have the energy to think much right now.   This is just an update from room 1514 where the surroundings have become so familiar that I accidentally referred to it as home to the resident this morning.

We had an eventful morning.  Our nurse, bless his heart, is a float and not used to this floor.  He was taught yesterday how to strip her chest tube after it went all day clogged.  He was assigned to us again today and when he went to strip it, he ripped the stitches out of her side that were holding it in place.  He is a nice man and was as traumatized by the situation as Maggie was.  I may have been the only one in the room not hyperventilating.  I honestly felt sorry for the guy.  It is not his fault that they pulled an orthopedic nurse to the cardiac floor.  My favorite surgical team member came immediately and repaired it but said the tube will likely have to come out in the next 24 hours.

I am pretty frustrated right now with the options that are left for us.  Trent and I have been inquiring about a procedure where they inject dye into her lymphatic system and see where the leak is and then repair it there.  The problem is that it has only been done in this hospital twice (it is done other places) and our surgeon refuses to try it because he says there is not enough evidence to support its effectiveness.   I get that but it comes with little to no risk and the other options all have much higher risks attached to them so I can't see why you don't just try it.  I then wonder crazy things like if we were in Boston if they would try it.   Perhaps that is not fair to the team that is working so hard to care for her, but it still makes me wonder in the midst of my frustration.

Our other 3 major options are:
1. Wait until the week after Christmas to do a heart cath and see if anything else is shows up or if she just gets better on her own with her current diet and another medicine.
2. Completely remove food and beverages from her diet for weeks and let her get her nutrition through IV.  She would feel hunger and would be denied the right to eat for WEEKS.  I can only imagine the psychological trauma that could cause.  I also have serious concerns about how this would affect her seizure threshold.
3. To go in and spray an adhesive (Pleurodesis) to her chest wall that would seal up any leaky vessels and cause her lungs to stick to her chest wall and forever impair her pulmonary function.

See why I was really hoping for an attempt at the other procedure?  What do we have to lose?

So here is how you can pray:
1. Pray that God would guide the hands and decisions of the medical team and that we can trust that.
2. Pray for the patience we need to get through this well.
3. Pray for my kids.  I know if it doesn't feel like Christmas to me, it probably doesn't feel much like Christmas for them either.  I want them to be okay when all this is said and done too.

Where Are Your Eyes?

This has been A WEEK OF WEEKS for sure.  Let's see, we rolled 4 weeks in the hospital with little change, my front door handle broke, and then my garage door motor died making entering my home increasingly more difficult by the day.   Also this week, my microwave went on strike and somewhere around Wednesday I came down with the upper respiratory virus that Maggie had the week before.  Oh and we wrapped up the week of adventure with our credit card being skimmed and sold to someone in Virginia.  Not kidding.

When I think about our week, the spiritual attacks on close friends, and the rise in violence we are seeing around the world, I have to think that Satan is rallying his troops.  It appears to me that we are facing an increase in spiritual warfare where we are forced to choose between our personal comfort and the God we profess to follow.  I, like you, respond first with fear.  Then I am forced to trade my circumstance-driven emotion for truth-based perspective.

You see, I spent most of this week focused on the enemy and the weapons he was sending my way.

Now, I would like to tell you about my week again.  We had A WEEK for sure.  The body (army) of Christ showed up and took care of us in our time of need.  Four friends cooked dinner for my family, another friend took over my carpool duty to give me more time at home, and Trent's dad stepped in and relieved me twice at the hospital so the middles didn't have to come home from school to an empty house.  Two friends came to visit us at TCH to bring light to a dark moment.   Three friends unexpectedly blessed us with gifts for Maggie to also brighten her day and another sent a package to Ruthie just to let her know she is loved.  A friend with a key to my house noticed my grocery list on the counter and then sent her husband to the grocery store to purchase what we needed without me even knowing.   Finally, we wrapped up the week with some good friends from church taking their Saturday morning to dress up like The Clauses and make Maggie's day.  It was a week for sure and I saw the hand of God, through his army, all over it.

I use the word "army" to define the church because we are clearly in a spiritual battle.  How we interpret our battle is going to depend upon where we place our eyes.  If we are locked in on the acts of the enemy, we will collapse in defeat.  However, if we shift our gaze to the battle that Christ is fighting on our behalf, we will march on victorious.  We are, remember, not just conquerors but more than that (Rom. 8:37).


I certainly felt defeated at times this week and even had the absurd audacity to compare my 1st world plight to the suffering of Job.  It was pretty thick around here at times.  BUT, when I shifted my eyes from my attacker to my reality, I saw a completely different picture.

Where are your eyes today?  If you are a believer in Christ, take comfort in that He says we have already won (2 Chron. 20:15).

John 16:33  "I say these things to you that you may have peace. In the world you will have tribulation. But take heart; I have overcome the world."



A little update on Maggie- It feels like we are in a bit of a holding pattern.  They are still draining through the chest tube and playing with her diuretics to try and get her to a safe and stable dose.  We may get a heart cath soon or we may just continue to wait for her body to adjust to the new demand.  We are choosing an attitude of patience and gratitude.

We Are More Than Survivors

I am having one of those Mandisa, pump your fist in the air, this is not going to bring you down, kind of moments.  I know that I am not the only one going through something hard so I figured this was worth processing out loud and sharing for anyone else who needs a shot of "you got this girlfriend."

So here you go:

I am tired of just surviving this battle.  My mindset in this journey has been to just get through this hospitalization and then get back to my life.  Simply put, I have been merely surviving.  I am tired of just surviving and I believe that God wants more for us in the midst of our trials.

He doesn't allow us to walk through the unthinkable just to wear us down.  No!  He wants us to come out victorious, stronger because of it, with greater perspective, and closer to Him. That kind of swag (loot, booty, whatever you want to call it) from battle requires thriving in the midst of our trial, not just surviving it.

I have a few observations on thriving I want share with you as you too choose to more than survive:

1. We have 3 options during a trial.  We can give up, we can survive, or we can thrive.  
I am going to focus on surviving and thriving as giving up is not even an option for me.

2. The transition from wanting to give up to thriving is a process.
There is a time in any trial when we all just survive and that is completely normal and okay. This is where the Bible speaks to God holding you and carrying you.  It's real and it's okay to be in survival mode.  There comes a time, though, when there might be more and that is where thriving begins.

3. Thriving is easy to see as an end goal but it is more than that.  Thriving can happen in the moment.
I started thinking last night of ways we can thrive this week and I decided one way was to change my mindset from living x-ray to x-ray and instead to seize each day we are here.  I want to make every day an adventure to live for her.  You will probably see piñata party pictures some time soon, maybe a visit from a princess or Santa, and anything else crazy I can come up with to help Maggie thrive through this and not just endure it.  If you have any ideas for how we can thrive through this, please share.

4. Surviving lets your circumstances define what your are capable of.  Thriving let's your dreams and God define your capabilities. 
If you have looked at the news or your Facebook feed at all this week, you have probably stumbled upon the story about a the New York Times Reporter, Serge Kovaleski, who challenged the claims of presidential candidate, Donald Trump.  Let's move away from the main story and talk just about Serge for a moment.  This is Serge.

Serge has Arthrogryposis, the same diagnosis as my daughter Ruthie. When I first saw this picture, my immediate thought was "Holy cow this man is a WRITER!"  As I sit here and type on my computer, I can't imagine all that Serge has had to overcome to be able to do what he is passionate about.  I have no doubt that someone along the way probably encouraged him to pursue a career that did not require the use of his hands.  That choice would have been just surviving arthrogryposis.  Serge has thrived in the midst of his battle and might just unseat one of the most popular presidential candidates of our lifetime all while raising awareness for his diagnosis.  Go Serge. Way to thrive. 

5. Thriving is a picture of redemption.  

In surviving we experience God as comforter and that is a good thing.  However, in thriving, we get to experience Him as redeemer and that rocks.  

Romans 8:37  Yet in all these things, we are more than conquerors through Him who loved us.

6. In Surviving you are defined by your experience.  In Thriving you are defined by your response.    

When the chapter of this journey ends, I don't want to last line to be, "and they survived."  I want it to be a story of overcoming, a story of personal growth, a story of good ministry, and a story of thriving. 

I don't know about you, but if my hard time is going to define me, I want to be defined by my response of thriving.  I want to be better for it.  I hope this encourages you to seek the same. 

Parenting My To-Do List

God uses crazy times, like the one I am in now, to teach me hard lessons.  He usually lets me observe something around me, experience it personally, and then He comes in hard with the one liner that drives home the truth.  If I really need to see it, there is also a closer of some sort that seals the deal.  This was one of those weeks.

I am sharing in this in hopes of encouraging those of you who feel similar pressures as I do and find yourself caught up in the demands of the world at the expense of those who matter most. Finding balance is hard and we need to stick together.

So here is how this lesson went.

The Observation -
If you haven't heard, we hit a crisis point a week ago.  Our 3 year old daughter, who we thought was recovering beautifully from heart surgery, ended up having a massive pleural effusion and was admitted to the hospital for what could be weeks.  I seriously panicked.  Our schedules are already completely full.  We did not have time for this.  As a response to my panic,  I started in with what my friend Debbie calls the motion pictures in our head.

The Experience -
Motion pictures are those perfect scenarios we create in our minds that are not reality and only leave us frustrated in the end.  In my motion picture I was picturing who my mom would be in this moment if she were still living and could help me out.  I needed her to be the kind of mom who would drop everything and come to my aid.  I have friends with moms like that and I have always jealously observed that type of relationship.

My Academy-Award-quality motion picture played out like this - I would pick up the phone and call my mom with the report of what had happened.  She would say something like, "Give me 30 minutes to clear my calendar and I will get on the road."  She would then arrive to my house with frozen casseroles in hand (like Paige's mom).  Then, while she was meeting the needs of my children, she would also find the time to tend to my flower beds and decorate my house for Christmas (like Rebecca's mom).   She would impart great wisdom to our souls and leave us all spiritually healthier for having been in her presence (like Keith's mom).  I would be at the hospital in perfect peace knowing that my mom, who cherished her family above all else (and had crazy mom skills), had everything covered.  It was a real Hallmark Channel original folks.

This time my longing (motion picture) turned to anger that she wasn't there and that role had been robbed from me.  I told God what kind of mom I would be when my kids were older and needed me.  I would be this mom I had observed who would again drop everything and serve their children in a moment's notice.

The Lesson -
Then with me crying while driving on 610, God went ahead and hit me with the truth- "How can you expect to be that kind of mom when your kids are older if you aren't a drop everything mom when they need you now?"

OUCH! (and a few other expletives)

It hurt, but it was true.  I was responding to this crisis while trying to still figure out how I could fit everything else in.  I was parenting my child, at their point of greatest need, from the demands of my to do list.

So I went home and sincerely prayed that God would show me how I was supposed to respond.  In typical spiritual lesson fashion, His timing was perfect and He was about to bring in the closer.

I started Thursday with a 7 am report to my sports medicine job which would immediately be followed by a pediatric home health patient, a newborn shoot, piano lessons, AWANA at church, a soccer game, a late night switch at the hospital with my husband, and 2 more hours of editing beside a sleeping baby.  Forget the fact that we are out of groceries and my big 3 had emotional needs that weren't being met.  We had places to be and things to check off people!

The Closer - 
As I was wrapping up item #1 on the list, my supervisor called me in and said, "I wanted to tell you that we are having some scheduling problems so we have decided that everyone with your status will now be required to work one Saturday a month."

Yep, in an instant it was clear that the job I loved, with coworkers I cherished, in a community I felt called to serve, was adding an item to my to do list in a non-negotiable time slot.  Two weeks earlier I probably would have tried to figure out how to make it work, which is no doubt why God allowed it to be brought to my attention in that moment, as the closer.

I submitted my resignation to Methodist St. John on Friday.   I had no choice if I was going to stop parenting from my to do list.  I am still sad about it but also really hopeful for what God has next and how He is going to use this to bring about His (not my) purposes in my family.

I am still figuring this out and God is still teaching me, but I have a few observations from my journey thus far that I would love to share with the 10% of you who share in this struggle. :)

We can call this - Things to Consider When Trying To Avoid Parenting From Your To Do List 101:

1. To-do listing your kids is first a state of mind that then becomes a state of function.
There is no 3 step solution.  It requires a paradigm shift to break the pattern.

2.  Do you find your significance in your busyness?
This is a generational curse that I have observed in my family.  We feel like the busier we are, the more significant we are.   So we take on more and more until we are running ragged.  I don't have any memories of my mom relationally but I sure can recite her resume to you for the number of times it was recited to me to describe her.   That kind of measuring stick was passed down to me as a means of self-evaluation.  I know, that's messed up.   #WorkingOnThat

3.  Do you have consistent moments to cherish the little things?

4.  Love and hurry cannot coexist (John Ortberg- The Life You've Always Wanted ch. 5).

5.  Changing this pattern may require giving up things that you enjoy in exchange for the priority of your family.

6.  Ask yourself, does my to-do list own me?

7.  Changing this pattern may require financial sacrifice.

8.  Are your priorities motivated by your desire to please your peers?
Had I said yes to working Saturday mornings, I would have placed my desire to please my supervisor over the needs of my family.  That's what we call "no bueno."

9. When you step out in faith to align your priorities with God's calling, He always takes care of you.
We have seen this with our adoptions, family moves, and many other moments where we made a decision that terrified us but we knew was right.  It's the truth folks and as much as we would like confirmation on the front end, that first step of faith is critical.

It's All About the Inside

This position feels so familiar.  Two months ago Trent and I questioned our decision to send Maggie into surgery for her Fontan heart repair.  She appeared really healthy and we feared the consequences of our choice.  God showed us, in several ways, that we were making the right decision because even if she looked good on the outside, she was a wreck on the inside.

I was just sitting in the TCH cafeteria remembering those days as we once again prepare to send her back to surgery.  I really can't put into words how good she looks so you should just see this video that Trent captured last night of her running down the hallways of the hospital.

The problem is that once again she is a disaster on the inside.  Her left lung is full of fluid and it is  getting worse.  Because it has been coming on slowly, she has adapted to the demand. Her surgeon says that any day now it will become emergent and that is not the surgery that we want to be going into.  

As I was reflecting on 2 months ago and then today, I felt like God said to me, "That is exactly how you were before you found me- looking good on the outside, running around without a care in the world, but a complete mess on the inside and in danger of what might come next without immediate intervention."  

Does that sound familiar? Maggie's situation right now is the perfect illustration of how we all look apart from Christ.  How many people can you think of who have slowly adapted to the consequences of what is taking place inside of them such that they still look like they have it together when in reality, their situation is catastrophic with out a surgeon, The Surgeon? 

So as I sit next to my seemingly healthy, but desperately sick, child and wait for her surgeons to bring her to a right place, I am thankful for God's healing power in my own life and trust that He has hers too.

   

Not "To Be" but "That They Might Know"

My car stays on Christian radio.  While I may not love every song, God seems to speak to me consistently through that medium and so I keep it there.  One such lesson came last week when I was driving home from a photo shoot.  The DJ came on and told a story about a lady who had been recently widowed and asked for listeners to join in prayer for her.  Her prayer sounded exactly like what most of us would have prayed in that moment.  It was in the line of "Lord, please be her comforter and her husband" that it hit me.  I am asking for something that He already is!  It is in His character.  That doesn't come and go according to our circumstances.  It always is and He already is!  So, why do we pray that way when He has already defined Himself as such?

I thought of the countless times when I have asked God to be my provider, someone's comforter, or my source of peace.  I never questioned my semantics until that moment when it occurred to me that He already is.  The disconnect is not with God's identity in the situation, it is with my surrender to it.

I believe our best response to this is to pray differently.  I am going to stop praying that God would be a certain role in someone's life and start praying that they would experience Him as that role.

Personally I am going to ask 3 questions of myself (and pray these for others) when I am in need of God's presence in my situation:

1. Am I responding in Faith?  Do I really believe that God is my ________ and what does the evidence of that belief look like?

2. Am I responding in Function?  Does my obedience to God's word in this situation reflect my faith that God is my _________?  Am I doing what His word commands concerning my situation? Am I seeking Him in this role according to his Word?

3. Am I responding in Focus? Do I have my eyes fixed on Him instead of my circumstance?

To put it simply, the bridge between my circumstances and desired outcome is not God showing up in a certain role.  He is already fully there.  The bridge is my correct response to His presence.

So I will continue to pray according to God's character but I will know longer pray that he would "be."  I will now pray that they would "know."

Escaping the Tyranny of Labels

There is something you probably don't know about my husband.  The man has some serious preferences with his automobiles.  He wants all of the family cars to be white, with light interior, and sticker free.  So you can imagine my shock when I walked outside one day, several years ago, and saw a translucent apple stuck to his back windshield.  I returned to the kitchen and said something overly dramatic and sarcastic like, "We don't put crosses or backwards swimming fish on our cars, no cute little decals that represent our family, and no pine cones for the ministry that has shaped us, but we are okay with apples?"

His response was simple, "It came with my new computer and I like my Macintosh."

I laughed and pointed out that if you are going to send one message to the world with your car, why not let it be your preference in computers.  We moved on, removed the apple, and have since returned to vehicle simplicity and anonymity.

The lesson I am desperately trying to illustrate here, my friends, is that:

"YOU DON'T HAVE TO WEAR A LABEL JUST BECAUSE IT IS HANDED TO YOU"

I have been doing some thinking about labels lately and our tendency to let them define us.  When I talk about labels, I am not talking about the foundational ones that we cannot escape from like mom, sister, and daughter.  Think of those like the Honda decal on my car.  They come with the vehicle.   I am talking about the additional labels that we choose to take on or let others place on us like stay-at-home mom, pastor's wife, disabled, overweight, working mom, missionary, empty nester, Republican, divorced, widow, crazy, damaged, new mom, home school mom, and I could go on and on.  You get the idea.

Take a minute and think about the labels you have taken on and then let's 'talk' about them.

I Believe 6 Things Are True of Labels:

1. Labels place performance burdens and expectations on us that God may not have intended for us to bear.
The problem here is that we then feel the need to live up to those expectations in order to be faithful to our label. 

For example, 
"You are a stay at home mom so you should be the room mom and President of the PTA. "
"You are the pastor's wife (or kid) so you should behave perfectly and be at the church for every event."
"You have a degree in XYZ so you should be using that to support your family financially."

2. Labels are used to try and define our state of mind or emotional response (and they are usually wrong).
The problem here is that we either take on a negative emotion that we would not have felt had it not been suggested to us OR we feel guilty for not feeling the positive emotion.  

I was a blockhead a few months back and kept asking my friend, who had just returned from the mission field, if she was excited to be settling into her new home.   Of course, she was just trying to adjust and catch her breath.  Thankfully she was gracious enough not to tell me where to stick my assumptions of excitement. 

Other examples, 
"You are an empty nester now, aren't you so lost?"
"You are a new mom, you must be happy all the time to have that new baby."
"Your husband is a disabled vet, wow you must feel so burdened."
"You are single so you must be lonely."

3. Labels make unfair assumptions of our attributes.
Individuals then relate to you based on those assumed attributes and that never ends well. You know what they say about people who assume things. :)

For example, 
"You are a missionary so you must be super-spiritual."
"You are tattooed so you must be rebellious."
"You work outside of the home so you must not enjoy your kids like stay-at-home moms."
"You are overweight so you must be lazy."
"You trusted that man so you must be naive, stupid, or gullible."

4. Labels try and define our perspective.
In this situation we are grouped with others who carry the same label but possibly not the same values.  I believe this is where ministry is most hindered. 

For example, 
"You are a Republican so you must hate people on welfare."
"You work out and eat healthy so you are probably judging me for not doing so."
"You are a home school mom so you don't approve of my kids who go to public school."
"You are a Christian so you must hate homosexuals."
"You are a police officer so you must hate black people."

5. Labels ascribe value.
Two jacked-up extremes come to mind with this one - professional athletes and orphans.  We ascribe great value to one because they can run fast or throw a ball and zero value to the other whom God refers to caring for as "pure and undefiled religion."

Other examples,
"You come from money so you are special"
"You are divorced so you are not valuable"

6. Labels try and define your future.
I work every day to fight this lie.  Whether it is in my clinic or my home, I battle the notion that being disabled defines what you are capable of. 

Other examples, 
"You are being raised in the projects so you are destined to do drugs or end up in prison."
"You are a pregnant teenager.  Your life is over."
"You are childless so your future won't be fulfilling."

Do you see any of these 6 attributes in your labels?  

Some friends of mine made 2 other great observations that I want to share with you about labels:

• "If this is in any way like the bins that are labeled at my house....the labels aren't always what is truly inside or are not the only thing inside "

• "To add to the conversation about labels placed upon us, I'll give an example from my childhood. People inside and outside of our family often complimented my older sister's looks and my book smarts. We were constantly labeled as "the pretty one" and "the smart one." While we always had (and have) a very close relationship, those labels did breed insecurities in us both. As adults we've talked to each other about how she never felt smart and I never felt pretty. An example of how labels can often make people feel limited or less worthy, even when meant as compliments."

So here is where it gets really good.  

There is only one label we are supposed to wear and it too carries these attributes. But with this label, the attributes are a lot more encouraging. 

The label is "IN CHRIST."  Here is what the Bible has to say about our position in Christ. 

2 Cor 5:17  Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!

1. Performance or expectations on us when in Christ    

1 Thes 2.4  We have been approved by God to be entrusted with the Gospel, which leads to our desire to please Him and not perform for others.

Eph 5.1  We are imitators of God BECAUSE we are His beloved children.

Eph 2.10  We are His workmanship created for good works that we should walk in them.

When we are powerless to do a thing, it is a great joy we can come and step inside the ability of Jesus-  Corrie Ten Boom

2. Our state of mind or emotions in Christ    

Rom 12.2  We are to be renewed in our minds which leads to transformation

Eph 4.22-24   Putting on the new self instead of wearing around the old by being renewed in our minds

Col 3.1-4  Set our minds on things above not on things of earth

2 Tim 2.22  Flee youthful desires / lusts / compulsions and pursue the right things with the right kind of people

3. Our attributes in Christ   

1 Tim 1.13-16  God uses the imperfect and rebellious so that He can magnify His mercy (what you think might disqualify you may actually be God magnifying His mercy)

1 Peter 4.10  Be good stewards of the grace-gifts God has given us

4. Our perspective in Christ  

1 Cor 4.2-3  It matters that we be found faithful, BUT people aren’t our judges.  We ourselves don't get to be our own judges.

5.Our value in Christ    

Ps 139  We are knit together by Him.

Eph 2.10  We are His workmanship / masterpiece.

Luke 12.7 / Matthew 10.31  We are valued by Him and He takes care of us.

“It does not matter where we come from or what we look like. If we recognize our abilities, are willing to learn and to use what we know in helping others, we will always have a place in the world.”    -Ben Carson

6.  Our future in Christ

Jer 29:11  For I know the plans I have for you declares the Lord, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

Eph 2.7   God will forever display His kindness toward us in Christ – heaven will be an ongoing fireworks show of His mercy and grace to us.

Phil 1:6  Being confident of this that He who began a good work in your will be faithful to bring it to completion until the day of Christ Jesus.

So here is what I think we are supposed to do with this.

• Identify the labels you have take on. 
• Identify how you have let them define your performance, emotions, attributes, perspective, value, and future.  
• If you are like me, you need to make a list to make it real. 
• Replace those labels with "in Christ" and replace those attributes with your position "in Christ".

I think it is time for us to find an "in Christ" bumper sticker.  What do you think? :)

Mountains and Airplanes

     I love to travel and I especially love when I get to travel internationally. Initially, I struggled with long international flights. Sitting in a chair for hours did not align well with my tendency for hyperactivity.  In order to continue my love for international travel, I had to learn how to physically and mentally power down for the 10-20 hour ride. I also had to learn to trust the plane and the pilot when turbulence hit or we encountered an unexpected delay.  Now when I travel internationally, I lay down all of my expectations for arrival and departure times, I lay down my food preferences, I lay down my need to be in control, and I just power down for the experience because I know it is a necessary means to an end.

     Last summer when Maggie spent months in the hospital, our experience felt like we were climbing a mountain and through it all I felt like God was guiding me through the terrain. This experience has felt much more like an international flight with God as the pilot. The timeline is predicted but not guaranteed.  I have no control over the turbulence and while my preferences are considered, at the end of the day, they hold very little weight.  

     I think the hardest part is that last summer I felt like God was right beside me and guiding me through every turn.  This year, I truly feel like He is in the cockpit.  He comes over the speaker every now and then to reassure me or give me directions but what He is expecting, through it all, is that I trust Him.  I should have seen this coming.  As I was getting ready to board the plane of this experience, I felt like God clearly said to my heart, "I've got this".  Those are preparatory words and they are words that I have had to cling to when this plane has started to shake or the course on my screen did not look like the one I had charted in my head. 

     I don't know why God sometimes holds our hand through every step and other times calls us to trust Him as he leads from the front of the plane.  I can say the experience has been lonelier spiritually but I know that it is all for a purpose and is necessary for what He wants to teach me through this.  

     Maggie appears to be improving.  I commented during rounds today on how much better her heart rate was and I was glad we were passed that concern and the doc gave me the "not yet" look.  Her drainage is slowing which is fantastic but I got another "not yet" look when I asked about pulling her drains.  We are ready to land this plane.  This now feels like the end of the flight when they turn the lights back on, you need to go to the bathroom but you don't want to step past the guy sleeping next to you, you start imagining all that waits for you when you land, you stare anxiously out the window, and your heart rate starts to rise as you count down the final minutes.  Yep, that is pretty much where I am and I am praying the pilot doesn't tell me that we need to circle for a while before we lower the flaps.

You can pray for steady rhythms, decreased drainage, and peace.

Just for fun, here are some other similarities between international flights and long hospital stays:

1.  You live from meal to meal just to break up the monotony.

2. You catch up on every movie or TV show you didn't have time to see the year before. 

3. You long for a breath of fresh, moist air again. 

4. You can go hours longer than you ever thought imaginable without going to the bathroom.

5.  You have a tendency to lose your sense of time.  

6. If you are with a child, the ultimate accomplishment is when they fall asleep.

7. It is a great place to people watch and make up scenarios in your head as to where they came from.

Thanks for praying and hanging in there with us. 

11 Days After the Fontan

Maggie's Fontan was 11 days ago and we are not exactly where we hoped to be but we are were they prepared us to be.  When I asked her surgeon how long we would be in the hospital, he said to prepare for 3 weeks.  Of course, I asked the other heart mamas too and the range was 10 days to 3 months.  So I set my hopes on 10 days and prepared my calendar for 3 months.

It looked like we were moving toward the 10 day goal until about 4 days ago.  Maggie's chest x-ray took a dramatic turn for the worse and her drainage began to increase and turn cloudy.  That cloudiness indicates that her lymph system is draining into her lungs and that has required more aggressive treatment.  She also has a small amount of fluid around her heart that requires extra measures.  So as I was told today, we might be here a while.

Mornings are definitely the toughest.  After being woken up multiple times in the night for assessment, Maggie starts every morning with a 4:30 am chest x-ray that is followed by IV meds, blood work, rounds, dressing changes, and tube drainage.  She then gets PT and respiratory therapy.  By 11:00 she is pretty traumatized and exhausted.  I keep her up until lunch and then we all crash for a few hours.

It breaks my heart to hear her cry out "I want to be all better" and "why are you hurting me".  Sometimes I want to scoop her up and run out and then other days, like today, I just sit there and cry with her.  I hate to see her suffer and I have to remind myself that, in the end, this is for her good.

So when we aren't busy doing hospital stuff, we try and make her time as tolerable as possible.  We dress up like a princess, ride in a car that she has attached herself to, have endless tea parties, and play in the child life room.  Her smiles are what make all of this still bearable.

One thing that I am incredibly thankful for is that she really does have moments, even hours some days, when she looks pretty good.  She plays, laughs, makes demands, and bosses everyone around just like home.  I realize that it could be a lot worse and she could be laying in a bed all day unresponsive.  So I am thankful.

Our big prayers are for the drainage to clear up, for her to get off of her meds, and for her circulatory system to function like it is supposed to.  You can also pray for her mental health.  I fear how traumatized she will be from all of this.  Please pray she forgets and heals emotionally too.

Thank you for every prayer, comment, message, visit, and for just loving our girl.  

Moving in the Right Direction

I have heard people say, when considering adoption, that they just aren't sure they could love an adopted child as much as they love their biological one.  Well, I can tell you from personal experience, that you do.  You love that adopted child with every fiber of your being and when you watch them sleep in their hospital bed, that love brings you to tears.

Sometimes this journey is hard, but there is not a second that passes when Maggie is not worth the sacrifices we have made to be here.  I am reminded all throughout the day how blessed we are to be her parents and my love for her leaves me again today in a state of thankfulness.

Here is an update from yesterday:

• Maggie was more alert today and did not have any major seizure episodes.  She had a few moments where she would appear to lose focus and freeze but I cannot say with certainty that those were more seizures.  The attending ICU physician ordered a CT and an EEG today.  The CT thankfully came back fine and the EEG had some irregularities but the physician felt they could be explained by her surgery and presence in the ICU.  The Neuro team did increase her seizure medication dose and I feel good about that solution. 
• Maggie's lungs are continuing to drain.  They cannot remove her chest tubes until the drainage is complete.  I hear that the chest tubes are painful and their removal will make her feel much better.  So we can pray for that to be soon.  
• We are expecting to be moved to the floor tomorrow.  This will be a great step in the right direction.  
• We were supposed to get her up walking yestoday but she was unable to even sit on the side of the bed.  You can pray for her to regain strength. 
• We had a couple sweet moments where she sat in my lap or let me paint her toe nails.  We have not seen any smiles and she doesn't say much.  I am looking forward to more steps in the right direction there.  

The Last 2 Days

I am once again playing catch up here.  Last night I was too tired to form a complete thought but tonight my wakefulness has been aided by a dear friend who shared her Netflix with me.  So with 3 episodes of Madam Secretary down, I am now still wide awake at 1:00 am and able to give you an update on Maggie Mei. :)

I had 3 fears going into surgery yesterday.  The first was that she would not survive.  We shared a US Consulate appointment with a child like Maggie who did not survive her complete Fontan so of course that possibility was very real to me.  My second fear was that she would be deprived of oxygen to the point that it would further the brain damage that occurred last summer.  I followed the story of another sweet child this summer who went into cardiac arrest following his Fontan and was declared brain dead from a lack of oxygen to those tissues.  So yes, once again, a very real fear.  My final fear was that her lungs would not accept the new circulation and she would not be able to come off of bypass or the ventilator.

I am happy to report that none of these were Maggie's story.  In fact, she came off of bypass and the ventilator without any difficulty and has been showing her spunky personality again since she woke up.  I recognize that this success was not guaranteed to us and thus is a gift.  Why the Lord has chosen to grant her another set of days, I don't know, but once again I am thankful.

Transition to today.  So, yes,  today has been full of ups and downs.  The positives are that they removed her catheter, her arterial line, and her supportive oxygen.  They took her off of the scheduled pain pump and she is not receiving pain meds on demand.  This is all good but not without its challenges.

Here is what you can pray over for Friday and how ever long it takes to resolve these:

1.  Maggie is vomiting which is causing increased discomfort and dehydration.  They have to regulate carefully how much fluid they give her because of the fluid still on her lungs.  The vomiting makes that even more challenging.  Pray this stops.  She also has not had a wet diaper since removing her catheter this morning so there are talks of putting it back in.  Pray she makes a big wet diaper.

2. Her lungs are still draining blood.  This needs to stop before her chest tubes can be removed.  Tonight her oxygen sats were dipping back to pre-op levels and she had to be put back on oxygen.

3. It appeared that she was having alternating periods of lethargy and wakefulness today.  It was puzzling until tonight when I witnessed Maggie have an Absence Seizure during a pain episode.  Maggie had these seizures last summer and they were always followed by moments of deep sleep.  I notified the nurse who notified the team and she came back and said, "they think it is just the dehydration."  Well, they didn't see it and they don't know my child like I do so I will give them the grace to be wrong.   Tomorrow I need these episodes to end completely or for them to call in a Neurology consult.  If they don't, I may just have to call one in myself.   I really think all she would need is to be have her seizure med adjusted from the weaning off dose she is currently on to a weight appropriate dose due to the change in status.  You can pray that I don't have to go all crazy mama bear on them.

4.  Finally, pray for sweet time.  I held her briefly today but she was uncomfortable and wanted to return to bed.  Pray for sweet moments of comforting and bonding.

Now that I have discovered Netflix and Madam Secretary, I should be able to stay awake long enough to update you again tomorrow or the next day.  Thank you for your prayers.  They mean everything to us.

Praying For Maggie

I have some amazing, God fearing, encouraging, selfless friends.  They bless me far more than I am able to bless them in return.  One in particular sent me the most touching prayer that I have ever read for Maggie.  I shared it with Trent and we were both moved to tears.  I want to share it with you in case you are praying for my girl as we count down the last few days before her procedure.

 If you are praying for Maggie this week, you can pray this way:

"I have decided to pray, starting on the 1st, for a decade of Maggie's life per day. That will cover 90 years. That's what I'm going to be asking;). 9 decades.

I will pray the first decade that she will meet Him and know how adored she is.

On the 2nd I will pray that in her teenage years she will be the ONE kid who thinks that this teenager thing is easier than being a kid. That she will have time to reflect on the challenges of her first decade and root herself in His provision over her life.

The 3rd my prayer will be that she find love in so many ways that it is impossible for her to ever remember the scars of being orphaned and the loneliness that was. That His love be so overwhelming and that she know the love of many people, perhaps even the one she will spend the rest of her life with.

The 4th will bring prayers for her 30s (4th decade) and I will pray that her life be a blessing to all she interacts with. That they will see and know how big her God is and he miracles he performed in her life.

On the 5th I will pray that her children (God willing) and those she is ministering to will be open to and soaking up all the wisdom she will have to share. That her reach because of Him will have no boundaries.

On the 6th I will be praying for a sweet time of reflection over the life she has led so far. That Miss Maggie, in her 50s, will be able to have seen and been a part of so many miracles that the amazing miracles granted in her youth are just a small part of her story.

On the 7th I will pray for comfort as Maggie grows in her ministry and age. That she be reminded of the spirit of power that has been granted her and instead of slowing down, she will just be getting started.

The 8th will bring prayers for a fearless Maggie who is now in her 70s. That her grandchildren, children, and spiritual children will all rise up and call her blessed and that she will get the privilege of seeing that and knowing she did His work and they will continue it long after she is gone.

The 9th. The day. I will cover Maggie in prayer. For safety. For 9 decades of life. But on the 9th I will also be praying for her homecoming. We all want for her to be an old lady when she enters heaven, and I will pray on that day for the moment she sees the eyes of Jesus and hears "well done".

I am asking for each decade of her life I pray over to be 10 years. A decade as we know it. If it is or is not, my prayers are the same. If she enters heaven early and this decades were not even a year each or if she goes home as a 90 year old woman, I want you to know I'm covering each interval of her life in prayer.

Love you so. Praying peace peace peace for you, Trent, and the other wild ones;)