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!