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.