Hidden

Last night I went with a couple of friends to see the movie Joy. I haven't been to a movie in forever, so it was a treat. While I wouldn't necessarily recommend this movie (mainly because it moves really slow and not much happens), there was a line that stood out to me and is a deep truth. I wish I could have paused the movie and written it down exactly as she said it.

Joy, the main character, is having a dream as she's trying to put the pieces of her life back together. In her dream she encounters herself as a little girl who says to her, "We've been hiding for 17 years. When you hide no one can see you. The problem is, you also stop seeing yourself."

That is not an exact quote, but the point was pretty profound, and we all do that to some extent. There are circumstances that can cause pieces of us to go into hiding: we get made fun of as a child, we learn to hide as a defense mechanism to protect ourselves, we get so busy just getting through the days that we lose parts of ourselves, we get disappointed by life so we stop dreaming and just go through the motions, we learn to meet the expectations of others...

But there is one from whom we can never hide:

"Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you" Ps 139:7-12

This Psalm goes on to describe how carefully he was knit together by God's design.

After my son with special needs went into residential care and I got into the habit of getting quiet before God, I started discovering parts of myself that had gone into hiding during the 21 years of caring for him around the clock. There were things about myself that I had forgotten. But the things I had forgotten were in God's safe keeping. As I sat quietly with him, he began to remind me of how wonderfully he had knit me together and about gifts and dreams that needed to be revisited.

It's not a bad thing that I laid down my life in a sense in order to care for my son. It's a form of "dying to self". But resurrection follows dying. Sometimes resurrection can be scary, and we would rather stay hidden.

I pray that as you get quiet and still, you can discover things about yourself that may have been hiding but kept safe in God's heart. And may you also remember, or discover for the first time, how wonderfully you were knit together.

"How precious are your thoughts about me, O God. They cannot be numbered!" verse 17This Psalm goes on to describe how carefully he was knit together by God's design.

"How precious are your thoughts about me, O God. They canno

Perspective

“Then I went into your sanctuary, O God…” Psalm 73:17a

Take a minute to read this Psalm. The first part clearly describes what we do when we try to make sense of things ourselves, in our own understanding. The way things LOOK are not really the way things ARE.

The Psalmist gets so discouraged as he tries to sort things out in his own head that he ends up saying things like: “Did I keep my heart pure for no reason?” (verse 13) “I get nothing but trouble all day long: every morning brings me pain.” (verse 14)

To me that sounds a lot like when my children used to say: “I never get to……”, “You never let me……”, “Everyone but me has a …….”, “I don’t have any friends.”, “Nobody loves me.” Hopefully a child who is convinced in his heart that those things are true has a loving parent who can patiently bring perspective and help them see truth.

“But as for me, I almost lost my footing. My feet were slipping, and I was almost gone.” (verse 2)

So what do we do when we feel ourselves losing our footing? What do we do when we start wondering if God even notices or cares? What do we do when nothing makes sense and it seems like everything is out of control?

“Then I realized that my heart was bitter, and I was all torn up inside.

I was so foolish and ignorant – I must have seemed like a senseless animal to you." (verses 21-22)

 We do exactly what the Psalmist did. “Then I went into your sanctuary, O God.”  

 

When I feel myself panicking or I start acting crazy, I know that I am not spending time quiet in God's presence. For me this is how I go into his sanctuary. I have to get alone, quiet, and sit in his presence, and he brings peace and rest to my heart.

 

In her book, Invitation to Solitude and Silence, Ruth Haley Barton describes what getting quiet in God's presence does for her. If you put lake water in a glass jar, the water will be dark and murky with things floating around in it. After the water sits in the jar without being shaken, the water begins to get clear. The longer the jar is still, the clearer the water becomes.

 

Ruth says this is what her soul does in God's presence. The more she sits still and quiet in his presence, the more still and calm her soul becomes. I have also found this to be true.

"Yet still I belong to you; you hold my right hand.

 

You guide me with your counsel, leading me to a glorious destiny.

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.

But as for me, how good it is to be near God!” (verses 21-24, 26, 28a)

May he lead you to your glorious destiny!

Too High A Price

"The herdsmen fled to the nearly town, telling everyone what happened to the demon-possessed men."  Matthew 8:33

And just what had happened to the demon-possessed men? Jesus had set them free!

Can you imagine the herdsmen running through the town explaining that the men, who had been so violent that no one could pass through the area where they were, now were calm and in their right minds? No more walking around that area out of fear of these violent men!

Can you imagine how the men themselves must have felt? They had encountered Jesus, and he had set them free and their lives would never be the same!

The people came to Jesus after hearing this news:

"Then the entire town came out to meet Jesus, but they begged him to go away and leave them alone." Matthew 8:34

This is not the response I would have imagined after hearing how Jesus had set these men free. Oh, but the pigs! Freedom surely was not the only message the herdsmen told, there was also the loss of a whole herd of pigs! That cost someone dearly!

Freedom came at too high a cost, so they begged Jesus to go away and leave them alone.

I can't help but wonder in what ways and in what areas I do the same? Where in my life do I desperately need and even want freedom, but it might cost me, so I invite Jesus to leave that area of my life?

What if freedom would cost me a friendship, or laying down my rights, or having to forgive, or moving, or my reputation, my job, or.....?  Do I end up like the people of that town? "Thank you, Jesus, but I'm going to have to ask you to go away and leave me alone. I cannot pay so high a price?"

May we embrace freedom, at whatever it may cost us, as we encounter and embrace a Savior who came to set us free!

Angela

New Dreams

I have been drawn to the story of Lazarus lately.  (John 11:1-44)

Even though I haven’t recently experienced an actual death, there have been a series of “deaths” along this journey that we have been on with our Michael.

It started over 20 years ago when we had to die to the dream of a healthy baby and immediately thrown into the world of genetics, hospital stays and surgeries. We had no idea what life would look like for him or for our family, but we knew it would never be the same. We discovered we had deep unspoken dreams that we didn't even know were there. 

Dying to dreams would become a way of life, but with every dream that died there seemed to be a new dream that took its place:

 -Your son will most likely never speak….so we’ll find an alternative form of communication that he will be able to master and let us know what he wants and what is on his heart.

 -Your son will never reach a level of independence to the point that he could live on his own….so he’ll be eccentric Uncle Michael who is different from everyone else we know, but is a lot of fun!

 

-Not many people will "get" your son as his behaviors and appearance become progressively "not normal"....so my family will learn to laugh and take things in stride!

 -The country you are living in does not have what your son needs….so we’ll leave a ministry and people we dearly love and take him home and find what he needs there.

 -Even though your son has multiple issues, he will most likely outlive you and will need longer care than you will probably be able to provide.…so he’ll eventually live with siblings and their families and be just as loved as he is in our home.

 -Your son’s health is getting fragile and we cannot tell you what his future condition will be.…but he has a huge family who loves and adores him unconditionally and will find answers and care for him no matter what.

 -Your son is developing aggressive behaviors that require more than just behavioral plans to solve….so we’ll find a great psychiatrist who will help find answers to give him peace.

 -Your son’s issues are bigger than the behavioral plans and medications we are able to provide….so we’ll find the best hospital in the country and get him the help he needs.

 -Your son’s issues are more complicated than we thought and 4 months won’t be long enough for us to get a plan in place.…so we’ll fight insurance as long as we have to and travel across the country to visit him for as long as it takes.

 -Your son’s aggression is bigger than what you are going to be able to manage at home, even if you hire a full-time staff. He needs more than you can do for him ….so…….soooooo…...so we will find the closest place possible that can care for him and try our best to trust others to do what we long to do ourselves.

 -Your son will need to learn to cope without you, with a certain level of physical pain, to a large degree locked inside his own little world, and for some unknown reason will continue to express himself through aggression with people who know how to manage that and care for him. He will be “ok”, but you don’t get to define or demand what “ok” looks like in his life……..so…….so I can’t seem to find a dream to replace that!

 As I reflect on the story of sisters who lost a brother they dearly loved, I understand their disappointment that Jesus didn’t do what they asked him to do and knew he could have done.

 “But we sent for you in plenty of time!"

"But we know how much you love our brother, and you’ve allowed this to happen! "

"But resurrection and heaven don’t give me a lot of comfort in my grief today!”

 “But I still believe you are who you say you are even though my heart is broken.”

(my paraphrase from John 11)

 It’s interesting to me that, even though Jesus knows that he is going to raise Lazarus from the dead, he doesn’t try to console them with what is about to happen. Instead he is “deeply moved” and weeps with them right where they are in that moment.

 For some reason grief after death is important, even if resurrection is coming.

 Today as Jim and I grieve the loss of deep hopes and dreams, as we miss our son desperately, as we try to trust him to others and not become consumed with worry, we feel Jesus weeping with us. But there is a quiet whisper in my heart that says…..

“But you don’t know what resurrection is going to look like. Go ahead and grieve, it is an important part of the process, but don’t forget that I am who I said I am, and you cannot see what’s coming.”

 I don’t get to define what “ok” looks like for my son, and I don’t get to determine what resurrection looks like in our lives or in his. But I know we have a Savior who does not stay on a cross or leave people grieving at the foot of it.

 I will let him give the new dream when the time is right and trust that he has placed dreams in the heart of my silent son as well.

 And we will hope in the life to come!

 

I Know All the Facts

The last 2 weeks have been a whirlwind. Jim and I drove 14 hours to Baltimore for Michael's release from Kennedy Krieger and to drive him to St Louis to his new home. We spent 3 days with his staff in Baltimore learning his behavioral plan, talking through meds and transition, etc.

On Wednesday the unit had a Discharge Party for him and there were many tears. After being with him for 8 months, the staff there are happy that he's ready to go, but sad to see him go at the same time. On Thursday we loaded him up and started our drive to St Louis.

We got the beautiful gift of 2 perfect days with him. He never once made an unhappy noise or had an aggressive behavior. He was affectionate, loving, and laughed and danced a lot. I will forever cherish those 2 days with him.

We delivered him to his new home in St Louis on Saturday morning. The day went well as we tried to think of everything we needed to tell them about what he likes and doesn't like, what he likes to eat and doesn't like, filling in the blanks about his behavioral plan, unpacking his things, and simply getting him settled in.

We stayed in town for a few days to help with the transition. We saw them work him through some aggressive behaviors really well and feel great about the team over his care.

So why is my heart breaking and grieving once again? Why do I feel the urge to grab him and run away with him? Why the questions running through my mind about whether this was the right decision.....could I ever at some point done something differently to have put us all in a different place.....? I KNOW all of the right answers to the crazy questions running through my mind, but my heart has not yet caught up.

This is not how I pictured life, even as I adjusted my picture to include disabilities and non-verbal. I never planned on a mental health unit followed by full-time residential care. But the choice, in the end, was not mine. We had to respond to reality and limitations. So here we are.

Last night I was watching my current favorite TV show, Call the Midwife, to take my mind off of the emotional events of the last 2 weeks. On the show, the main doctor's son gets critically ill and ends up attached to an iron lung. As he's rubbing his unconscious child's head, the nurse is telling him the facts; that this is possibly not permanent, he could recover.....

The doctor finally interrupts her and says, "I know all the facts. But just now they are no help to me at all."

He put words to what I'm feeling! I KNOW that Michael is where he should be. I KNOW they are going to take good care of him. I KNOW that God is, has been, and will be faithful. I KNOW that we are in the palm of his hand, all of us. I KNOW this had gotten too big for me to handle or manage.

But today what my head knows is very different than what my heart feels.

So we chose to hope and trust, even through tears.
We chose to believe that God is good amidst things that do not feel good.
We chose to believe that the grand plan is sweet for our silent son.

"So we don't look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever."   2 Corinthians 4:18

Pressing On
Angela

Discipline

Jim and I have now spent many hours on conference calls discussing Michael's eventual transition from treatment to residential. Most of the conversation is between his current team in Baltimore and his future team in St Louis.The discussion is primarily about his behavioral plan and how to translate that from one place to the next and about what procedures are appropriate for his new setting and within the boundaries of what the state of Missouri will allow.

One of the main procedures that has been defined, redefined, and re-redefined is a question of "discipline". In the hospital, Michael is taken to a "safe room" when he gets to a certain level of "not having control" over his behavior. Amazingly, when he is completely isolated in that room he usually calms right down. His current team sees that as putting him in a position of being able to calm down and preventing him from potentially getting hurt or hurting someone else.

He obviously does not like going into the safe room and resists it, but once he's there he becomes calm and comes out his sweet self again, having regained control and composure.

The question has been: Since he gets to a certain level of being "out of control" when you put him there, is that disciplining him? Or is it merely giving him what he needs to cope? One team calls it discipline and doesn't want to punish him for losing control, the other sees it as helping him when he has lost control and cannot regain it on his own.  

One day, after a long phone call discussing discipline versus helping him regain control, I read:

"My child, don't make light of the Lord's discipline, and don't give up when he corrects you.
For the Lord disciplines those he loves, and he punishes each one he accepts as his child.
As you endure this divine discipline, remember that God is treating you as his own children.
No discipline is enjoyable while it is happening - it's painful! But afterward there will be a peaceful harvest of right living for those who are trained in this way." 
Hebrews 12:5b-7a,11

I don't like the idea of God disciplining me....or anyone. Why can't he always choose grace and just "let it go"? But hearing this conversation around Michael's situation has helped me see "discipline" in a different way.

What if God knows that in certain situations extending grace instead of "discipline" would be harmful to me?
 
What if allowing me to continue with a behavior or down a road of disobedience would mean I end up seriously hurt or seriously hurting others?
 
What if discipline simply means putting me in the place where I can regain perspective and come out more my true self than when I went in....even if it's where I desperately did not want to go?
 
What if there are times when "discipline" is really "grace"?

I completely trust both teams discussing my son and making decisions concerning his treatment and "discipline" or how to help him.

I don't know if he does or not, but he should. They all want to help him and they all know better what will help him than he does.

Perhaps I need to trust God like that!

A Dad's Perspective: Written by Jim Beise

Turn to me and be gracious to me,
as is your way with those who love your name.
Keep steady my steps according to your promise,
and let no iniquity get dominion over me.
Redeem me from man's oppression,
that I may keep your precepts.
Make your face shine upon your servant,
and teach me your statutes.
(Psalm 119:132-135 ESV)

"As is your way." This comes from a deep confidence in who God: Father, gentle king, suffering servant, ruler of all.
He turns to me, giving his attention. 
His eyes on me, nothing about me or in me beyond his sight. Not the dark places, not the bright horizon.
He is gracious to me. Loving, kind, generous.
He keeps my feet steady.

The other day I was alone, praying, and found my emotions spilling out again. I found myself saying, to my self, 
"I can do this. I can hold this together. I can do this. I can get through this pain."

What a strange way to talk to oneself.
Instead, there is a prayer that continues...
You, Lord, keep my feet steady. (I cannot do this)
You, Lord, do not let sin have power over me. (I cannot do this)
You, Lord, redeem me (I cannot hold this together)
You, Lord, make your face shine on me. (I cannot get thru this on my own)
You, Lord, teach me your statutes. (I am not smart enough to do this.)
You are beautiful, Lord, in your holiness and mercy, your graciousness and kindness.