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Of Isolation and Personal Responsibility

May 14, 2013 By

E Elliott quoteI have been pondering of late this sense of isolation that seems to go with hidden disabilities.  I have to acknowledge that some of it is my responsibility.  In order to move toward change we have to acknowledge our piece and deal with it.  We also need to share with others ways they can help us.  But one without the other is not likely to be effective.

So my piece.  The reality is that sometimes engaging in the “normal” or “typical” things in others’ lives just screams at me how not typical our life is. (Note, I DO recognize that “atypical” would be the proper word there but somehow it doesn’t feel as emphatic.  Go figure.)  Sometimes I can manage this and be o.k. and I participate.  Sometimes it is so painful as to be almost unbearable.  In those moments, I tend to not engage.  Is that the fault of others?  Of course not.  They are living their lives, celebrating their moments.  I want to celebrate with them.  How do I do that through my own ongoing grief…?  Not sure of the answer to that one. And in those moments I feel like some of them are thinking that I just need to get over any grief and deal with it…. The challenge, of course, is that the grief is not an event in time to “get over.”  It is an ongoing death upon death that is hard to explain unless you are living that kind of life also.

It isn’t even something I can wrap words around.  I am sitting here weeping as I type.  It just is.  It just is what it is.

Perhaps the day will come when those moments will not be so raw.  If so, I have not grown that much yet.  I am often not able to be there.  I want to be but I don’t know how.

Honestly that distresses me.  But I don’t know how to change it.  I take life as it comes and try to process as I go. I am not typically one who holds on to past offenses (real or perceived). I typically process and talk through as I go.

There are moments, however, when the processing is so beyond painful that I can’t do it with others.  Perhaps if I did they would understand more of our journey.  In that way, I suppose I may keep them from understanding.  Perhaps that is part of why this journey feels lonely at times.  It isn’t that people aren’t trying to understand. Sometimes they really are.  But they don’t understand.  And some of that responsibility may lie at my feet.  Because the most painful moments are borne alone or with our family… not shared.  Not borne publically.

So I am ponderous today.  How do we make things better in this area? Is it possible for it to be better?  Or is this just part of the hidden disability journey?  I would welcome your thoughts.

Moving toward the goal of true maturity,

Yours,

Shannon

Contact: shannon@chosenfamilies.org

Filed Under: Emotions, Grief, Hope, Uncategorized

Just Passing Through

February 6, 2013 By 1 Comment

I sat in a meeting of young parents (mostly of elementary kids) last evening as we discussed social skills and our school system. I am on the local Special Education Advisory Committee and we were holding a joint meeting with the Elementary PTA.  We have lived in this system for our children’s entire school experience and have been thoughtful and engaged parents.

I listened to the presentations of competent professionals sharing the many wonderful things they do to help kids learn social competency.

I looked around at the faces of many young, engaged, type A Moms and was deeply grieved. I was taken back by the emotion.  Our son is a senior and we are close to closure on this part of our journey.

No matter what plans they make or programs they have, some kids are going to fall through the social cracks.

My son is one of those children.  As social and engaged as I am, as active of an advocate as I have been on his behalf, he has still fallen through their net.

And there are no words to wrap around that grief.  Indeed it feels like the wind has been kicked out of me.  I would love to be able to explain it.  If I shared it with my son, the one who struggles socially, he would have the perfect analogy to explain it.  Not good — perfect.  His word pictures capture the heart as well as the mind.  He is gifted that way.

Having lived this journey so many years now, I am always a little surprised when the wave comes and knocks me off my feet. Again.  Going under, flailing to get to the surface, I come up for a breath. Then I swim to shore and wait for the wave to pass.

And I am reminded of this sweet passage: “When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you.” Isaiah 43:2

Look again at this… THROUGH… THROUGH… THROUGH.  We are passing through.  We may feel like we will get stuck in that grief.  But we won’t.  He is taking us THROUGH.

So grateful for the God of through,

Shannon

Filed Under: God's presence, Grief, Uncategorized

On Grief

January 30, 2013 By Leave a Comment

I think families living with hidden disabilites are always grieving. We grieve lost opportunities. We grieve current challenges. We grieve the pain our family members feel when their disability is the direct (or indirect) cause of pain in their lives. Yet somehow in this grief, we continue to run households and go to work and function as well as God allows. Because our lives appear normal from the outside, many people in the church don’t realize how very painful and heavy the emotional burdens can be for the lives of people touched by hidden disabilities. Many of my closest friends do not fully understand the emotional pain I experience daily, even when things appear to be going well.

This week, I realized how much I’m aching from watching my husband continually suffer. For years I have watched him cry out every time he had a seizure. The seizures are agonizing for Ben. I have also had to watch him in pain with his recent knee surgery … he continues to limp, experience swelling, and walks like an old man. Add to that his recent bout with pneumonia (right before Thanksgiving), and he now wheezes all the time and lost almost all of his remaining energy. Even walking upstairs leaves him winded, short of breath, and in pain with his knee. Surrounding everything is the constant grief we both live with daily because he is not able to work, not able to remember things, and frequently becomes confused or overwhelmed.

Finally, we are both daily aware of my own struggle with working outside the home and not being home to care for my husband and children full-time. We carry a tremendous amount of grief and sadness in our hearts every day. This grief in no way pushes away God’s love or loses the truths of the Gospel. I trust God’s sovereignty. I know He is working all things for good in my life. But I’m also aware on a deep, soul-level, that things are not as they should be. That this world is not what we are meant for.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.
(2 Corinthians 4:7-12 ESV)

Grieving but trusting,

Nancy

Filed Under: Grief Tagged With:

Of Basketball and Birth Family

January 9, 2013 By 5 Comments

I am embarrassed by my son.

He looks fine out there on the basketball court – tall, handsome, athletic.  But though he could be a star, he hangs back … too insecure to put himself forward and possibly fail.  His team is losing, badly, so he yells directions at the other kids (he feels out of control so he tries to control the world around him.)  The game is over (finally, mercifully) and he comes off the court blaming the coach, the referees, the other team – always the victim.  All those broken, unhelpful, self-defeating ways of coping which have their roots in his traumatic beginnings – these strategies he developed to cope with a dangerous and unpredictable world in the orphanage – defeat him in his world now.

And I am embarrassed.  It is so painful to watch.  I talk a a bit to the other parents who acknowledge me with a nod and move on to talk to someone else. I feel their judgement.  What kind of parent must I be to have a child who behaves that way?  My son is burning my social bridges here in our small town.  The other parents, the ones who are judging me, have no idea how hard I have worked to be the parent he needs to bring him healing:  the books read, the seminars attended, the years of family therapy (God bless my good husband for taking 1/2 a day off work all year to join us), the money spent, the sacrificed career, the constant intentionality.

And they have no idea how hard he has worked, this handsome wounded boy of mine; the incredibly painful things he has had to face as a child: the abandonment, the starvation, the sickness, the neglect, the horrendous birth family story.  We have made him face this awful abyss and talk about it, to relive his suffering in hope of his healing.  What suffering have their children faced here in their comfortable suburban lives?

I go home, put my children to bed, and cry.  These children of mine are a lonely road.

~ Trauma Mama

Filed Under: adoption, Grief

Sorrow and Grace

December 29, 2012 By 1 Comment

This year brought the deepest sorrow my heart has experienced in this life. My marriage ended in divorce. Along with the feelings of failure and disgrace came the sorrow of what this means for my children. It does not seem fair that children with special needs must also know the pain of a broken home.

This Christmas season has caused me to ponder the Baby who came to dwell with us. How does this impart joy into all the broken places of my heart? His coming does not make everything instantly better or okay. Life hurts. It is struggle. Those of us parenting children with special needs know this very well.

Yet the One who calls the stars out by name and sustains each with His power chose to come to us. Right into our pitiful mess. Right into our suffering. He chose to suffer with us and for us. Each time our heart hurts for our child who struggles, we join in His suffering. Pain is the pathway to experiencing Christ in all His fullness. Though we may wish to know Him any other way than through our hurt, our suffering is often His chosen instrument to probe and chisel the deepest places in our heart.

My attempts to solo parent push me closer to the throne of grace. I am thankful for a Father who understands what hurting feels like. I am thankful He offers grace to rise up and meet the need of the moment. I pray you find His grace today in the moments when you need it the most.

“Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.” Hebrews 4:16

~ Rebekah

Filed Under: grace, Grief, Uncategorized Tagged With: ,

After

December 15, 2012 By 3 Comments

It is Saturday morning. Saturday after.  One of the afters we will never forget.

There is so much noise this morning.  So much speculation, questioning, talk, talk, talk.  This is a time when 24 hour news is a nightmare.  Anchors must fill their time and do so with incessant and inane chatter.

I sit in horrified silence.

There have been other “afters”.

  • After the Virginia Tech shooting when 32 precious lives were lost.
  • After the Arizona shooting where 6 lives were lost and others deeply affected.
  • After the Colorado shooting where 12 people were killed and 58 others injured.

And now, a new after.

And 20 beautiful children who won’t wait to hear sleigh bells this Christmas.  Parents reeling from unspeakable loss.  Six adults whose lives were cut short protecting those in their charge.

And there are many questions.  What would drive someone to this precipice?  Were there warning signs that were missed?  What protections should have been in place?  How can we keep this from happening again?

But this is not a time for ceaseless chatter.   Those who do so do so for their own purposes.  The gun control activists who use this as the latest example of why we need to limit access to guns.  Some home school activists who use this as further evidence of why you really should educate your children at home.

No, this is not a time for ceaseless chatter.  This is a time for horrified silence.  This is a time to do as Job’s friends did when they came to see him.

12 When they saw him from a distance, they could hardly recognize him; they began to weep aloud, and they tore their robes and sprinkled dust on their heads. 13 Then they sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was. Job 2: 12-13

We will have thoughtful conversations at the appropriate time.  For now, let’s sit in horrified silence.  Let’s pray for the families of the slain.  Let’s remember the families of the survivors who have had their innocence stripped from them.  Let’s pray for law enforcement officials who have to make sense of the senseless. Let’s pray for the church in this community and the surrounding area as they minister the comfort of Christ.

Come quickly, Lord Jesus.

Filed Under: Grief

The Grass is NOT Always Greener

December 8, 2012 By Leave a Comment

A few days ago, I was deeply moved by a video clip shared on Facebook by a dear friend of mine. It was about childhood cancer, the number one killer of our nation’s children. I thought of my son, the same age her son was when he died of cancer. The thought of losing either of my children so moved me to tears, that I instantly grieved for those parents in the video clip who either were going through this battle with a child or who had lost a child to cancer.

About 3 or so years ago, I had reconnected online with this friend, who graduated with me from high school. Back then, we were different and not exactly close. However, time and experiences had shaped us and changed us both. We had kids around the same ages, having had them later in life. I instantly loved her and her family.

When I read her posts and saw all of the wonderful family pictures she faithfully took, capturing great memories, I was envious. She had two beautiful boys, still had her girlish figure, and her family did fun activities together (sailing, going to the beach, and just having fun together).

I also had two beautiful children, but my figure had drastically changed from just 3 years earlier and, since I had developed M. S., my limited mobility interfered with many family activities. Though envious, I truly enjoyed the person she’d become and always loved reading her posts. I jokingly told her once that I wanted to live vicariously through her. This comment later came back to haunt me.

About one year or so after we reconnected, I was stunned to learn that her oldest son had been in a simple childhood accident that revealed he had a tumor in his liver. It ruptured that day. Her nightmare began on his first day of summer vacation. He’d graduated from 5th grade and was ready for a summer of fun before entering middle school. He died from cancer almost a year from the day of his accident. I was privileged to be able to go to his graveside service and to hug my friend in person, later, at the church.

“Lo, children are an heritage from the LORD; and the fruit of the womb is his reward.” -Psalm 127:3

We are blessed to have the children we’ve been given and to have the privilege to raise them according to God’s Word. Would we want to trade the hidden disabilities of our children for a disease like cancer? I would never wish such a hardship on anyone, but I know God is able to carry any of us through whatever challenges come our way.

“Boast not thyself of tomorrow; for thou knowest not what a day may bring forth.” -Proverbs 27:1

Sometimes another parent seems to “have it all together” and we are envious. But we never know what struggles another parent faces or may face in the future. We may face things we never imagined could happen. That parent who “has it all together” may have her whole world come “crashing down around her” in an instant.

“Come unto me, all ye that labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart, and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.” -Matthew 11:28-30

I cannot control what circumstances come into my life. I have learned that the hard way. However, God doesn’t intend for me to handle things all by myself. How can I? Some burdens in life are too much for us to carry. Corrie Ten Boom told a story of her father using an example of a heavy satchel that was too much for her to carry. She later used that simple lesson to tell the Lord when “things” were too hard for her to “carry” during her time spent in a Nazi prison camp. We may not be in a Nazi prison camp, but the same truth applies to all of us. When life’s burdens are too hard for us to carry, we are encouraged to “cast” all of them upon Jesus because He cares for us.

Let’s face it, the grass is NOT always greener on the other side. God knows what lies ahead and is already there. He can “carry” those things that are too hard for us to bear.

-Grace

Filed Under: God's presence, Grief, Hope Tagged With: , ,

Glimmers of Hope

November 10, 2012 By Leave a Comment

Love your neighbor as yourself. Mark 12:31a

Life has been a little crazy for the past few weeks in our home. Between the challenges of moving, sickness and Hurricane Sandy we have had no shortage of excitement. While we personally only lost power for 27 hours, we still have friends and family without power and live only 20 minutes away from towns that were completely devastated by flooding.

My husband was able to volunteer with a large group from our church to reach out to some of these people. (Groups have gone daily since the Friday following the storm to lend a hand.) Their stories are heartbreaking and their despair palpable. Experiencing them first hand has recalibrated my priorities and minimized the inconveniences of life post Sandy: long gas lines, 8 days off from school, road closures.

So many churches are working TOGETHER in the hardest hit neighborhoods and people are overwhelmed that strangers would help them through their most difficult time and with such messy work. They have accepted prayer, asked for Bibles and inquired about the times of church services.

People we did not know existed before the hurricane have become our friends. We celebrate the progress being made as we follow up with them and distribute donated supplies. They are smiling and laughing again as they continue to grieve and rebuild. There are small glimmers of hope in their eyes. (As a depression survivor, I know the value of hope in any situation.)

God is moving and being glorified as His people seek to love their neighbors in very practical ways all over the northeast. As usual, our God is redeeming what was meant to destroy and drawing people to Himself – the True Hope.

Please continue praying for those affected by Sandy and find a way to serve your neighbors wherever you live.

Praying with expectation,

~Lynn

 

 

Filed Under: Depression, General, Grief, tragedy Tagged With: ,

MY MY MY

August 17, 2012 By 2 Comments

When my baby was two, my 5 yr old was diagnosed with cancer. It’s fair to say I was way beyond sad and stressed. I was sad because I could not prevent or protect my 3 three little ones from the suffering that slammed into their lives that year. I was stressed because, in addition to the cancer, I had NO idea what to expect from my husband who had become unstable on the home front. He was taking Lithium, which had worked well enough to keep him out of the hospital and employed, but it no longer gave us enough coverage at home. (It would be much longer before he was willing to try new medication blends.) To top things off, we were in a relatively new city, and unlike before (in our old city), or now (2 decades later), no one really knew about his bipolar diagnosis. Not that they would’ve known what to do if they had, but let me tell you – that particular “secret” quadrupled the weight of uncertainty I felt.

Despite everything that was going on, our 2 yr old was developmentally RIGHT on schedule, which means the favorite word was “my” –  as in, “MY daddy” “MY juice” “MY do it.” Since MY mama flew in to care for MY baby while I was gone to chemo, she heard this A lot. So when she came across this verse, she sent it to me, of course, because it clearly belonged to MY baby!

I love You, O Lord,

MY strength.

The LORD is

MY Rock (“crag” – hiding place) and

MY Fortress, and

MY Deliverer,

MY God,

MY Rock, in whom I take refuge;

MY Shield and the horn of

MY Salvation,

MY Stronghold.

Psalm 18:1-2

I kept it above MY sink for years. It became one well-used, faded and wrinkled piece of truth.

I remembered all this last night because that little 2 yr old is leaving for college once again…and I want this precious young adult to cling to these truths, in order to survive this year’s uphill climb of academics and a learning disability.

I wonder what are you facing today in your life with hidden disabilities? I am at least one witness to the truth that MY God longs to be

YOUR God – when others want to rule you

your Strength – when you are tired or weak

your Rock – when important things are unstable

your Fortress – when you need strong walls protecting you

your Deliverer – when you need a refuge

your Shield – when you are attacked

your Salvation – when you need rescuing

your Stronghold – when you need defending and safety.

From MY heart,

Joan

Filed Under: Bipolar Disorder, Courage, Family, God's presence, Grief, learning disabilities, Marriage, mental illness, Uncategorized

On Handling Unpleasant Emotions

July 11, 2012 By Leave a Comment

Ben and I are walking down a road right now that neither one of us could have ever imagined.  Ben is being asked to lay down so many things that comprise the very essence of who he is.  I am being called on to take on more and more responsibilities.  God, in his providence, has arranged our circumstances so that we both feel stretched beyond our limits (and have for many years).

We pray.  We ask God to change our circumstances.  But our tendency can also be to grumble.  To complain.  To charge God with not being good to us.

Ben and I were talking today, and we realized that behind all of our complaining, underneath all of our anger and frustration and grumbling, what we are really experiencing is grief.

The Bible has a lot to say about grumbling and about complaining, and none of it is good.  But the Bible also has a lot to say about grieving.   The losses Ben and I are experiencing are very real.  We are grieving the loss of Ben’s health.  We are mourning the loss of his freedom and ability to do many of the things he loves.  We are saddened by the fact that I need to take on even more work to help our family financially.  And we are grieving over the impact of all of these things on our children.

In 1 Thessalonians 4:13, the apostle Paul reminds his readers not to “grieve as others do who have no hope.”  My prayer is that Ben and I would not grumble or complain, but that we would grieve as those who have hope.  I pray that our grief would remind us that God promises us that there will be a day when God will wipe away every tear from our eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.  Lord, help us to live in light of that day.

~ Nancy

Filed Under: Challenge, grace, Grief Tagged With: ,
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