Spouses: On Grieving the Loss of Normal

As parents of children with hidden disabilities, most moms feel an ongoing grief over what they have lost.
Parents grieve the loss of a dream of a “normal” child.  Moms grieve daily over the dream of an easy (or at least normal) childhood, an education free from IEPs and other struggles, a profitable job in the future, and a “normal” life.
But what about the spouse whose husband (or wife) is suddenly hit with a disabling disease or condition?  Suddenly, things are different.  They grieve over not only that which is abnormal, but also over that which has changed:  that which is unnatural.
Beach 07_13 008When I married Ben, he was a bright, promising musician with a greater drive and a stronger work ethic than anyone I had ever known.  It was natural for him to relentlessly pursue every opportunity that came his way to advance both professionally and personally.  Twenty years and well over twenty seizures later, Ben’s disability has changed his very nature.  He now measures his success by accomplishing simple tasks without struggle, daily reminders, or blatant failures.  My husband is struggling to redefine his own “normal.”  And I find that I daily grieve for the husband that I lost.

Like parents of kids with hidden disabilities, I have to deal with the death of a dream.

But as the spouse of someone who has a disability, I believe I am also dealing with something very different.  I married someone who has now changed dramatically due to his disability.  I  live not only with the loss of a dream, but in many ways with the loss of some reality….I need to accept the fact that the person I married is gone and I need to find ways to adjust to this new person with his disability.

Ben and I are learning together.  It has been almost 10 years since my husband became disabled.  And we are still growing together on this journey, still figuring out what is normal and natural for us together.

The process is not easy.  We often struggle to find God in our search.  But we know He is with us…sympathizing, caring, comforting.  Just as I love climbing into bed surrounded by my blankets and pillows (and comforter) at the end of a long day, I love the image of God as our Comforter.  While He may not provide answers or change, the Holy Spirit functions as the Comforter.  2 Corinthians 1:4 says that God “comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”

I pray that one day we would truly find a community where this mutual comfort can be lived out and where we can find God using our pain for His glory.

Until then,

–nancy

- See more at: http://chosenfamilies.org/2013/09/spouses-on-grieving-the-loss-of-normal/#sthash.uVtvlHC8.dpuf

On Being Found, Yet Feeling Lost

Feeling Lost

The church is a wonderful place where hurting people can come to heal; where broken people can come to be fixed.

But my life is exactly the opposite of what I expected when I came to Christ.  I came into the church looking to minister to others, to share the Gospel with the hurting and needy.  Now I am the one who is broken.  Each day I struggle to commune with God when I know that He is the one who is allowing my trials.  I struggle to find time to read my Bible, to pray…my days are filled with going to work, caring for my children, taking care of the house, and dealing with the messiness of brain injury.  My vision of God has become cloudy as I feel ripped apart, broken down, and my life looks nothing like I expected it would.

“I once was lost, but now am found” becomes turned upside down to so many of us who once felt found suddenly feel lost.

I don’t doubt even for one second that I am saved. I had a very strong conversion experience in early college that completely changed my life and my heart. But I also have no picture of what it looks like to be a thriving, mature Christian who is always grieving, always weary, always feeling like giving up yet pressing on.  My husband and I have grown in our ability to accept the limitations and frustrations our family faces due to his brain injury.  But I am still learning to live surrounded by the grief of lost opportunities, the pain of seeing my husband suffer, and the loss I feel as I watch our family impacted by the strange symptoms of his unique illness.  I am still learning what it means to trust and love God in the midst of such profound difficulties.  I am still learning what it really means to fight for faith.

I have often quoted this verse from Paul:

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.  (2 Corinthians 4:7-12 ESV)

I know that God uses blogs like Chosen Families to make us feel like we’re not alone. And I am so thankful for this ministry and this community. But I need more than just words on paper. I need the living, breathing church to come in and minister to my hurting soul.  I need role models in my life of Godly Christians who have suffered lengthy trials and are still walking faithfully with their God.  I am praying that God would provide me with an older mentor, with the friendship of a godly woman who has suffered yet not lost faith.

And by God’s grace, I pray that one day I will have the privilege to play that role in someone’s life.  That one day, God might use my walk of faith and trials to lead me to  a young woman who feels lost, overwhelmed, and broken, so that I can point her back to the God who found her and keeps her.

Nancy

- See more at: http://chosenfamilies.org/?p=13230&preview=true&preview_id=13230&preview_nonce=275b1f9026#sthash.fQbesEH9.dpuf

On Family Life

One thing I’ve noticed is that the many writers here on Chosen Families tell wonderful stories. They really invite us into their lives, sharing the names of their children and honest details about what it’s like living with their particular loved one and their particular disability.

My life is somewhat different. I have three beautiful, neuro-typical children ages 9 – 14. This year, my baby is in elementary school, my boy is in middle school, and my eldest daughter just started high school. Whew! We certainly go through the gamut of emotions and experiences in our house. In one day, I can go from calming a tantrum of a nine-year old with a boo-boo (yes, some fourth graders still go ballistic when they get hurt) to introducing my son to acne medication to listening to my oldest share her heart about her latest crush…all within three minutes! But the fact is, my children are not struggling with their own disabilities. I don’t fear for their futures. I am not anxious about their ability to care for themselves or make wise decisions. Our unique homelife has made my children independent. Because they have a working mother and a sick father, they know how to clothe and feed themselves and they even take full ownership of their homework and their learning experiences.

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Photo by HelensPhotography, proud grandmother and portrait photographer

Yet our homelife is far from normal. Seizures cause my husband to lack energy and the ability to think clearly. Medication to control his seizures can make him sluggish and even more prone to anger (yes, there is one very effective seizure medication where “rage” is a listed side effect). And brain injury has robbed my husband of his working memory and his executive function. These three factors work together to make our homelife…well, unstable. My desire is to make our life as easy and stress-free as possible. Our kids don’t participate in many activities. We need routine to make life workable. But I don’t write much about the toll Ben’s brain injury takes on our family, because I want to protect my husband, whom I love. I want to encourage him when I see him doing well. I want him to find things he loves to do, even if they sometimes leave him feeling depleted and weak.

It’s easy to get discouraged. Even a small seizure can zap my husband’s energy and compromise his already weakened memory for several weeks. We can’t predict the seizures or prepare for them. And when a period of time goes by and my husband is seizure free, it’s easy to forget how debilitating these brain-storms can be.

How thankful I am that God promises to be our anchor in the storm, the stability of our times, our Rock, our Salvation, and our stronghold.  And how thankful I am to know that there is a community of saints praying for my children, that their own unique struggles with their father’s hidden disability will draw them closer to the God who loves them.

Nancy

- See more at: http://chosenfamilies.org/author/prosthetic-memory/#sthash.rXJk5Jxj.dpuf

On THAT Day

There’s substance that’s casting these shadows
There’s reason behind all this pain
All gold is made pure by refining
And plants cannot grow without rain

He’s promised to hold you and keep you
He’s told you that he’s always there
His Word says He’ll never forsake you
Or test you past what you can bear

So trust in Him all through this darkness
Hold fast to the truth of His Word
Be certain of His gracious promise
And rest in Christ Jesus our Lord

For one day all pain shall be broken
Renewed shall be joy that was lost
All death, pain and fear have been conquered
Because of His death on the cross

~Amy Calderone, 1992 – 2011

On January 17, 2011, our family lost a dear friend and a very special babysitter.  Amy suffered a cerebral hemorrhage on December 14 and spent her last several weeks in a coma.

Amy was a young woman with a great depth of faith.  She demonstrated her longing for heaven through her songs and poems, which have ministered to the lives of many…especially my children, who were just 11, 9, and 6 when their babysitter of eight years unexpectedly went to be with the Lord.

Oh how I needed this encouragement from this young saint over these past few months!  Amy is now celebrating in the presence of the God she worshipped, free from pain and grief.  One day, we too will be set free from our trials.  For some of us it may be during this lifetime.  For others, it may not be until that day.

Grief, anger, anxiety, confusion, and unexpected joy are all emotions we experience when we live with someone with hidden disabilities.  Often, I can experience each of these emotions in a single day (sometimes, even in a single hour!).  The Bible addresses these feelings in differing ways.  But the one common theme throughout the Bible is the fact that these emotions are temporary.  Revelation 21:14 reminds us that He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Let us all strive to live in light of THAT day.

Nancy

- See more at: http://chosenfamilies.org/author/prosthetic-memory/#sthash.rXJk5Jxj.dpuf

On Waiting

Would you like to know why there are so many scriptures on waiting on the Lord? Because waiting is HARD!!

Those of us who live with hidden disabilities as part of our family life are familiar with waiting:  waiting for a diagnosis,  waiting for a change,  waiting for employment, waiting to see how God will resolve a certain situation.

I have grown weary with waiting.  Scripture tells us in Galatians 6:9 “And let us not grow weary of doing good, for in due season we will reap, if we do not give up.”

I don’t know if I’ve given up.  But I do know that I no longer expect God to act quickly or to act in my favor.  I no longer expect for things to fit into neat little packages that resolve quickly and easily for God’s glory.

Below is a picture of my family after running a 5K this past weekend.  The race was particularly significant because my husband walked it with our son.  He had been incapacitated by a knee injury for almost a year, and it was such a blessing for him to be able to cross that finish line with our almost twelve year old son.

I aGirlsontheRun5Km currently in a difficult season of waiting.  Waiting used to be easy for me.  Now…not so much.  I am waiting for my husband to get an MRI scheduled (it’s been over 4 weeks) so that we can figure out why he has lesions on the right frontal lobe of his brain … not an area where we have ever seen seizure activity before.  We are waiting to see whether we will prevail in arguing our case before insurance companies due to Ben’s accident last year.  And I am waiting for a new job.  My current job leaves me reduced to tears each day.  I feel as though I am entering enemy territory each morning as I go to work; the environment is not hostile, but it is not conducive to spiritual or emotional growth, or even any kind of friendship.  I am working far from home and have been begging God for a job closer to home for almost a year now.

Our season of waiting includes so many unknowns.  But God knows.

The other day my thirteen year old came to me as she saw that I was struggling and she said, “Mom … I want you to know something I read this week.” “What, sweetie,” I asked, tears of unbelief and pain clinging to my eyes.  “I read that God will never give us more than we can handle,” she said.  Had any seasoned Christian said this to me, I might have responded in a way that was  … well, less than kind.  But it occurred to me that my daughter may have never heard this before.  I suggested she read Romans 8:28 “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”  And she prayed for me.  My sweet, on-the-cusp-of adulthood daughter, prayed for me (!) that God would not give me more than I can handle.

My girls ran the 5k last weekend. WiRun!th 3500 other students from Montgomery County, they ran. They ran fast. And they enjoyed it.  They remind me of Hebrews 12:1 Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Lord, please help me not grow weary with the waiting!!

Finally, for those single moms or moms whose husbands are disabled:  How many of you are the sole wage earners in your family? Are you working in the field you studied in college? What type of extended family support do you have? I think I need more support than I’m getting, but I honestly don’t know how to find it.  I could write an entire blog post titled, “On Rejection.”  I am waiting on a diagnosis for my husband, a job for myself where I don’t cry every day, a new therapist in our insurance plan, and practical help with how to deal with rejection (or seeming rejection ) in any form, since I am being asked to do cold calling almost every day as a part of my job (though there is nothing at all about this in my job description).  Any suggestions from those of you who have been there before would be greatly appreciated!

Journeying with you,

Nancy

- See more at: http://chosenfamilies.org/author/prosthetic-memory/#sthash.rXJk5Jxj.dpuf

On My Reluctant Work History

I never expected I would be a working mom. I only wanted to care  for my children and husband, work at home, and volunteer in church in  ways I enjoyed and believed God could use me.

meg and momSeveral years ago, I was pulled away from being a stay-at-home mom and brought  unintentionally  into the workplace.  The situation was not planned … my husband had underestimated the extent of his disability and had  accepted a job with our church that he could not perform.  Ben, a former college music teacher and orchestral musician, was now spinning his  wheels to run our church’s Music Academy.   I am naturally organized and gifted administratively, so it made sense for me to pick up the  administrative portions of Ben’s job.

This arrangement worked well for us for a while.  But then Ben’s seizures started interfering with his work.

After several hospitalizations, it became clear that Ben could no longer work anymore.  I took on more roles in the church and school (my dual  degrees in Music and English education and my administrative giftings  served me well).  I was working a full school day,  administrating the  Music program, teaching Choir and English, and I was blessed to be able  to spend each day in the same school building as my children. My job was a mishmash of things I enjoyed and had been trained in.  Despite  the disjointed nature of my work, I poured myself into it.   I suffered  occasional burn-out, marveled at the unplanned ways I had become a mom  with a full-time job, but daily thanked the Lord that I could work in  the same school where my children attended.   And through it all, I  still believed God would one day heal Ben and I would no longer  need to work full-time.

Then things changed.  The doctors said there was nothing more they could do for Ben.  The school decided they really needed  someone who could teach band.  I was “let go.”   For the first time in  my adult life, I had to find a full-time job to support my family of  five in one of the most expensive counties in the country.  I had no  idea what I was qualified to do.  I have an undergraduate degree in teaching music and a graduate degree in teaching English.  But my  teaching certificates were not current and  I was burned out and  had no desire to teach.

I found a job working as senior staff with an educational association.   It seemed like a great fit.  I enjoyed the work.  But it required that I travel.  A lot.  And each time I traveled, Ben’s health grew worse. No  matter how hard I tried to arrange our circumstances, Ben continued to  have multiple seizures each time I would travel.  I grew weary with all  of the trying.  Trying to arrange family life so that Ben’s health would be OK.  Trying to do my best at work.  Trying to trust the God who had  provided this job for me, while allowing my family to suffer.  It was clear I needed to find a new job with no travel so that my husband could heal.

So I had to find  a new job.  Again.  With limited skills in a difficult economy and a now spotty work history.

God provided a new job for me in government contracting.  I wasn’t  really keen on accepting the position, but it seemed like God had  provide this good job with a good salary to help my family heal.

The truth is, my family is finally thriving … and I am miserable.  I vehemently dislike the industry where I am working.  I have not made a  single friend at my job.  I have watched co-worker after co-worker leave due to the poor environment. I find myself  wondering how I  could have so grossly misunderstood God’s plan for my life.  The truth is, my husband’s health is as stable as it’s been in years. My kids are thriving.  Yet I am withering on the vine in a job that is far from  home and seems to drain away all hope and good feelings I have.

How can I explain what it’s like, to be a working mother almost by accident.  I have really fallen into each of my jobs as a means to an end.  I have never had a chance to ask myself … what do I want to do?  What would I enjoy? What kind of people do I want to work with?  And who would hire someone like me, with such a spotty, unplanned work  history?  And where does God fit into all of this?  Does he even care?

Would you please pray for me?  I have finally realized that I will be the  sole supporter of our family for the foreseeable future.  I would love  to be happy … even fulfilled in my work.  But I feel so guilty for  asking for this.  And God seems so far off.  So I covet your prayers.

~Nancy

- See more at: http://chosenfamilies.org/author/prosthetic-memory/#sthash.rXJk5Jxj.dpuf

On Grief

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.

Ben's photos from HTC phone 716This 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

- See more at: http://chosenfamilies.org/author/prosthetic-memory/#sthash.rXJk5Jxj.dpuf