Ambiguous Loss and Permission to Grieve

My first experience with grief was in the 5th grade when my grandfather died. 

That was a very long time ago, but I can still remember the strong smell of a mixture of roses, lilies and carnations from the floral arrangements during visitation. My sisters and I gathered some of those flowers at the graveside the next day and took them home. I also remember that we cried a lot, told stories as we remembered Neely Orr, and had a beautiful service. Then I went back to school and life resumed. I realize now that life didn't resume quite the same for my grandmother who had lost her husband or for my mom who had lost her dad. Eventually even they seemed to find a new normal and carried on. 

There were other losses through the years, but all were losses we knew were coming. Grief took its rightful place as we healed and moved on. What I was not prepared for was the day that grief came knocking at my door in a very unexpected way. This one I did not see coming!

My 4th baby was born with a rare genetic syndrome and severe disabilities, and it was immediately clear that life would never be the same for any of us. None of Michael's prognosis were life threatening, which brought great relief. So, when grief kept pushing its way into my heart, I was confused and kept attempting to push it right back out. Sad was an emotion that made sense. I was sad to see my baby suffer and sad that all of our lives were now different. But I had not actually lost my baby, why grief?

What I know now is that I was experiencing an ambiguous loss. I held my baby in my arms, but I lost the little boy that we had waited for and dreamed about. I have a friend who cared for her father as she slowly lost him to Alzheimer's. I know others who have "lost" loved ones to addictions, deteriorating diseases and mental illnesses long before they lost them physically. There are no flowers to gather, no service, no community sitting together remembering stories, and too often no one giving you permission to grieve.

I grieved the baby I lost when my Michael was born. I grieved as I saw other kids his age hit their milestones, go to school, start driving, go to college, slowly become independent, and get married. 

Grief has often knocked at the door of my heart out of the blue and at unexpected times through the years. I've learned to let it in. I don't have to understand all the reasons that it showed up that day or in that season, and I don't have to be afraid of it. It does its work of helping my heart to process, and eventually lets up. Through these 24 years, I have learned a few things about grief, whether it is ambiguous or not.

1.  It's OK to grieve even if no one else is grieving and no one else understands. 

Often when I am sad or grieving, people have pointed out all the reasons that I should NOT be sad. They bring up all of the things that are going well and might even mention others who have it worse.

"Well, at least you still have a son."

 "Think about how well that last surgery went." 

"But he has come so far." 
"Look at what ______ is having to deal with." ...

I know they mean well and just want to cheer me up, but what I really need is permission to grieve my very real loss.

2. Grieving does not mean I don't love my son. I've long stopped shaming myself or feeling guilty for what I am feeling.

I can hold the son I have while grieving the one I lost.

3. Grief has no expiration date. It will show up wherever and as many years later as it pleases and usually stays longer that I'd like it to.

Most people can handle my grief for a time, but they get to a place where they need me to be OK.  There are, however, those few who can sit with me in my grief for as long as it takes. I invite those who can walk that difficult road for the long haul into my grief, and I let the others off the hook.

Each person can only offer what they have to give. 

4. I am kind to myself when I am grieving. 

I have learned to listen to my body and pay attention to my heart. Muscling my way through a time of grieving has not served me well. I will take a morning walk instead of my normal run. I sleep a little longer, make sure I eat well, and spend more (or less) time with friends, depending on what my heart needs. I make time for silence where Jesus can speak His peace directly to my heart.

5. I no longer try to push grief out of my heart. Years ago, a very wise counselor told me that sadness is like the tuba in an orchestra. It brings depth to the overall sound. However, if it were to blare full-blast all the time, it would drown out the other instruments.

Grief has a seat in my orchestra. To try to kick it out actually causes it to play louder. To accept that it has something to offer allows it to bring depth and a different kind of beauty to the overall melody. 

I am the conductor of my little orchestra of emotions. There are times that I accept the score and allow grief to bring up the volume. There are other times when the dust settles, and I allow it to bring the quiet depth that only it can bring. In those times, others rarely notice it is there. I wave my hand to motion it to play softer, and I take in the mystery of different emotions that combine to make a beautiful whole. 

Life is full of expected and unexpected loss. Jesus told us that this journey called life would not be easy or void of pain. I no longer deny or shake my fist at the process of grieving. I give my heart permission to embrace the process and to take the time it needs. 

And I gratefully embrace the comfort that only the Savior of my soul can give. He always gets it. He is always near. He always has patience and room for my grief. He always grieves WITH me. 

"Blessed are those who mourn, for they will be comforted." Matthew 5:4

In "it" for the long haul

Two people stand in front of their friends and family and vow that they are going to love and be committed to the other for the rest of their lives. They have no idea what the future has in store for them, but they promise to face whatever comes as a united front. They dream about what the future could have in store, make their promises, and march into the unknown hand in hand.

This weekend I looked over at the one I stood with over 30 years ago. He had our 21 year old son's legs draped across his lap as his head leaned against me on the other side. We were sitting in a theater watching Finding Dory, a movie made for preschoolers, as our son laughed LOUDLY (and not always at appropriate times) and made his happy noises (that often sound more like someone being brutally attacked than an outburst of delight).

We've grown accustomed to the uncomfortable stares as our 21 year old lays across us like a toddler and makes his unique sounds. The stress factor was in not knowing if the happy noises would suddenly turn into unhappy grunts and lead to aggressive behavior. We were on high alert to bolt for the exit door at any moment (with our son, not leaving him in the theater! Just being clear).

But the noises stayed happy, the stares didn't phase us, and we had a happy day. As I looked over at my faithful husband, loving on and truly delighting in our adult/toddler son, he winked at me. I was overcome with emotion. This was not the dream as we held hands and marched towards the future as 22 year old newlyweds. But thank God he meant what he promised when he said that we were in it together, whatever "it" turned out to be.

"Greater love has no one than this, that someone lay down his life for his friends." John 15:13

Great love could also be described as: "that someone lay down his dreams for his child" or "that someone lay down his comfort to walk a hard road with his wife" or "that someone lay down his pride and embrace a child with severe disabilities and behavioral challenges." , "that someone stay when most would go"...

Love will require you to lay down your life in one way or another. I have been blessed to see love up close and personal!

This journey with our son is not over and is as unpredictable as the day he was born. I am grateful for a partner who still holds my hand, looks at the unknown future, and says "We're in it together. Let's go!"

Dare To Hope

Peace has been stripped away, and I have forgotten what prosperity is.

I cry out, “My splendor is gone!

Everything I had hoped for from the Lord is lost!”
Lamentations 3:17-18

I was recently reading along in my reading plan and came across those words. “Everything I had hoped for from the Lord is lost.”

I had to stop and keep my eyes on those words for a few minutes as they pierced my heart. I felt like the writer of that passage had taken pen to paper, thousands of years before I would read them, and handed me a way to express my deepest grief. I had so hoped for things that now seem lost. I even hoped "in the Lord"!

The prophet Jeremiah had a tough life mission. His job was to warn God’s people to repent in order to avoid exile. This was not a job that he sought out or applied for and even tried to run from. The mission came to him. He was chosen for the job.

If I had been Jeremiah, I would have interpreted the call as: “Make sure these people don’t blow it and end up exiled.” But his call was actually to WARN them, it wasn’t his responsibility that they listen and obey.

As the mother of a child who suffers and has multiple disabilities, I can relate to Jeremiah. This was a call I did not sign up for. I sat in the hospital for days, as he was in the NICU, sure that God had chosen the wrong momma, wondering if I could run. But once you fall in love, you really can’t run.

So we took our little guy home, and somewhere along the way I decided that the call was to fix him, not simply love, nurture and help him be the best he could be.

The book of Lamentations is the lamenting of everything coming to pass that Jeremiah had warned the people about. It is most likely written by Jeremiah himself. What more could he have done? How could he bear to see the people he loved, even with the grief they cause him, carried away?

Twenty-one years after taking my “special” baby home from the hospital, I feel like I’m sitting in similar rubble. My son’s needs became bigger than we could manage. The answers and miracles we hoped, prayed and fought for didn’t come.

 

In many ways, placing him in residential care a year ago felt like failure, a death to dreams, and a mission not exactly accomplished. And Jeremiah seems to understand my mother’s grieving heart as he expressed, “Everything I had hoped for from the Lord is lost.”

Fortunately I kept reading his lamenting.

"Yet I still dare to hope

when I remember this:
The faithful love of the Lord never end!
His mercies never cease.
Great is his faithfulness.”

My eyes once again froze on the words, and I felt as if Jeremiah were whispering my ear:
“Dare to hope again, Angela…and remember! Remember who HE is. His faithfulness and mercies are great. His love will never end. Remember what he HAS done for you.
Lift your head again and DARE TO HOPE because of who is he and not what you see!”

As I am beginning to hope again, I realize that my job wasn’t to fix my son. I even realize that he’s not MINE at all! My job was to love, nurture, and move things forward for him, to do what God showed me to do one step at a time the best I knew how.

Jeremiah delivered his message and then sat in what he desperately did not want to be the outcome. And he found the courage to hope again. 

Hope is slowly filling my soul again as I am remembering that God is faithful to me, to Jim, and especially to Michael.

Out of my reach doesn’t mean out of God’s.

We will dare to hope!

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. 

Always On My Mind

As I strained to hear the voice on the conference call and frantically looked at the list of names to know who was talking, I couldn't help but think of my son sitting in his hospital room almost 900 miles away.  He had no idea that there were 17 people in 7 different locations who had been on a call for over an hour discussing him.

It has been 6 months since Jim and I drove 14 hours to admit Michael to the Neuro-Behavioral unit at Kennedy Krieger Institute in Baltimore. Now we are preparing for his transition to St Louis to live in a residential facility with Easter Seals. 

These conference calls happen weekly now and include 16 professionals in different locations, and us. The topics include: how to set up his new residence, what procedures to put in place to deal with his aggressive behavior, what staff to hire, how to train the staff, etc. Data is given, procedures and policies are often disagreed upon, discussion happens, agreements made. All the while, the subject of all conversation sits in his room in the hospital oblivious to the attention he is receiving over the air waves.

We visit Michael at least once every 3 to 4 weeks. Since he is non-verbal, it's impossible to know what he is thinking when we walk through the door. Does he wonder where we've been? Would he like to ask what took us so long? Is he just so happy to see us that none of that matters? Does he long to go home? 

What he is not aware of is all that happened that led to us walking through that hospital room door. Normally it means we got up at 4 am, drove 2 hours to the airport, parked our car, took a shuttle, got checked in, went through security, took 2 flights that included a layover, waited for our luggage, took another shuttle to rent a car, and drove 30 minutes to the hospital. All he knows is that he looked up and saw us walk through the door. 

We don't explain all we did to get to him, he wouldn't understand. We just wrap him in our arms, tell him we love him, kiss him, and settle in.

As I strained to hear the voice on the conference call last week, I couldn't help but think about Michael sitting in that room, unaware of all that goes into his care; all of the battles we have fought to get him the help and resources he needs, the sleepless nights when all we think about is him, the conversations, the paperwork, and our heavy hearts as we miss him and want better for him. He is always on our minds!

Later that day I thought about all of the times I ask the same questions of God that my son might be asking: What took you so long? Why haven't you worked this out? Do you even remember that I'm here? 

I have no idea all that goes on and how he is at work for my good in ways that I cannot see or understand. I will never understand the depths of his love for me...or for my son. But I do know that nothing can separate it from me, and I am always on his mind! 

I will find my peace and hope in that.

Lent

I grew up in a church that observed Lent, but didn't teach much about it (in all fairness.. maybe they did and I wasn't paying attention...that's possible!). We seemed to talk more about caffeine headaches and how much we missed chocolate than about 40 days to intentionally set things aside to focus on intimacy with Christ and to draw near to him! 

 I honestly thought that "giving something up for Lent" was the whole goal. No one ever told me that you give something up as a fast to physically show your hunger and longing for God.

I also didn't understand that this is something we do in secret. (See Matthew 6) The attention we get from talking about our caffeine headache is the only reward we will get if giving up coffee is the goal. However if our goal is to draw near to God, then "your Father, who sees everything, will reward you." (Matt 6:18). I say let's shoot for THAT reward!

In recent years I've also come to see the importance in asking God's guidance in what I should do during these 40 days of Lent that will draw me closer to Him. Often what I think I should give up is different than what I really NEED to give up. He may have something in mind that is way different than what I had planned. He knows us better than we even know ourselves.

I pray that during these 40 days you will feel the love and the wooing of a Savior who adores you and longs to pour that love on you.

Angela

http://www.upperroom.org/lent101

http://www.focus.org/blog/posts/what-should-i-do-for-lent-pope-francis-ten-tips.html

The Writer of the Story

"Maybe you don't want to change the story, because you don't know what a different ending holds. There's a reason I am not writing the story and God is.
He knows how it all works out, where it all leads, what it all means.
I don't."  Ann Voskamp from A Thousand Gifts

If I had been writing the story 20 years ago today, our Michael would have been born with a perfect set of chromosomes, no deformities, no condition that would lead to autism and a mood disorder. I have begged God to write the story differently. I have imagined what life would be like if I had been writing. I assume that my writing would lead to a better ending. 

But I did not and am not writing the story, and I do not know what the a different ending would look like. Today we take comfort in the Writer who knows how it works out, where it leads and what it all means. We find joy in watching our boy dance. Oh how he loves to dance! We are amazed at the impact a silent one can have. We hurt when he hurts. We so wish for more for him. We laugh and cry. We recognize that each of our stories are better because of his. 

We look forward to the day when all will be clear, and we will see the pieces of the story that are hidden from us now.  

We place all of our hope in the One who writes perfect eternal stories.

And we are grateful!

Amazing Grace

When my children were each 5 years old I had them memorize Psalm 103. I wanted God's character branded on their little hearts, and their default setting to be: "God is good, compassionate, gracious, slow to anger, abounding in love, He does not treat me as I deserve to be treated because of my great sin, He knows that I am made of dust...." Since then, many times in my prays I have gone back to that Psalm and been overwhelmed with gratitude that He truly does not treat me the way I deserve to be treated because of my sin. I am so aware of and humbled by His grace.

Recently I was praying and thanking Him for that and felt that He whispered to my heart, "Do you extend the same grace?" I had to ponder that and allow Him to show me the ways that I do NOT extent that same grace to those around me, often those I dearly love. 

When I see someone not doing what I know they should do, not living as they should live, choosing sin, and heaven forbid not doing what I've told them to do.....always for their own good of course.....my tendency is not to extend grace. My tendency is to at least withdraw my affection and approval for a while. After all, how will they come around and do right if I just keep loving them and walking close beside them?

The truth is that God hasn't called me to fix people or to make sure they live right. He has called me to speak truth and to love. Only HE can change and heal a heart, only HE can call a person's soul to Himself. I've had a lot of repenting and changing to do. I happen to like helping the Holy Spirit out! 

To love is always the right thing to do. I'm asking the Holy Spirit to point out to me any time I am not extending the grace that has been extended to me in such a loving way. I'm learning to walk with people on their journey and not dictate the steps, I'm learning to love even when they are wrong....not condone or approve, but always to love and never to withdraw my affection.

I pray that you are aware of God's character and unconditional love for you, regardless of your sin and missed steps. I'm sorry if you have been treated the way you you deserved to be because you sin. 

I pray that a lost and hopeless world will be amazed as they see the same grace we've received in those of us who represent Him!

To love is always the right thing to do! What amazing grace!

Easter

Today is Easter…a reminder that there is hope in all that is not as is should be…there is resurrection after death….all things will be redeemed...and one day all brokenness will be healed. 

This Easter is timely for me. We’ve had a year of watching Michael in severe pain and not known where it was coming from or what to do about it. We’ve been in and out of hospitals. We’ve watched him try to fit in at schools, on outdoor basketball courts and soccer fields where children are playing, all to no avail. We make life decisions for him without the benefit of hearing what HE wants or what HE would prefer. We see people judge him when his behavior is out of control and not see the sweet guy behind the behavior. This hope of life beyond what we see now is like water to my parched soul. 

When Michael was a baby I watched an interview with a mom who had a child with special needs. Her main statement was “Love is not enough”. Her point was that you have to fight for your child, you have to seek out answers, you have to push and insist that they get what they need, you have to demand a yes when all you hear is no. “Love is not enough”. That has rung in my heart for 19 years and has kept me awake many nights wondering if what I was doing for him was enough…certain that it wasn’t. 

Then Michael’s brother said something to me that changed everything. “Mom, don’t you know that one day a mighty soul will show you off all over heaven and talk about how well you loved him.” His words went straight to my heart and planted a new theme. Love is enough. 

Maybe love IS enough! Don’t get me wrong, I will continue to fight for what my son needs, but now I will fight from a heart that is free and understands that for all that is not, love is.

Love was what drove Christ to a cross. The love of the God of all Creation was what broke the grip of death and set our Savior free. Love is what draws me to this perfect Savior. Love sustains us as we live with broken hearts. And love will get us through. 

Happy Easter. And happy loving!