On Being Different

keep-calm-because-you-belong-to-jesus-christ“One of these things is not like the other; one of these things just doesn’t belong…” So goes the old Sesame Street song. Sometimes, I can lean towards self-pity and feel that I am not like those around me, like I am the one who doesn’t belong.

Having a husband with a disability makes me different from those around me. Being the sole wage earner in our house makes me different from my peers at church and at work. Working alongside my husband to help him succeed in spite of his disability can be wearying; I am especially aware of this fact when I am around other couples who talk about their relationships. My marriage is different…and has changed drastically since Ben acquired his brain injury ten years ago.

How often I wish Ben’s disability fit into a neat package — that I could find a support group for people with my issues. There are support groups for caretakers of those with epilepsy. There are support groups for those supporting a loved one with a traumatic brain injury. But I don’t think I belong in these groups. Ben’s issues don’t fit into any neat category. I haven’t yet found a support group for emotionally fragile women whose husbands suffer from seizures and significant short-term memory loss.

I know there are lots of great support groups out there; however, I don’t feel like any of them fully fit where my family is at or where I am at due to my husband’s disability.

It’s easy to feel like I don’t belong.  I think many family members who live with those with hidden disabilities feel like they don’t belong. But the Bible reminds me otherwise:

“…including you who are called to belong to Jesus Christ.” Romans 1:6

I belong to Jesus. And I don’t need any support group other than church to remind me of this wonderful fact!

Nancy

Contact: Nancy@chosenfamilies.org

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On Sharing a Bed

sweet dreamsDespite it’s slightly suggestive title, this post isn’t about marital intimacy.  It’s about what it’s like to share a bed with someone who has seizures.

I have a confession to make.  Even after 21 years of marriage, I can’t fall asleep if my husband is already in bed.

Ben suffered his first seizure in his sleep two months before we were married; his second nocturnal seizure was two weeks before our wedding.  Seizures are loud and they can be violent.  I happened to be in the hotel room to watch this particular seizure, and to watch the 8 paramedics carry him off strapped to a medical pallet (they had to call for back-up because he was resisting so strongly in his half-conscious state).  Despite my love and trust in God, from that point on I have never been able to fully relax when sleeping next to my husband.

Initially, Ben was diagnosed with nocturnal epilepsy.  That meant that his seizures only occurred while he was sleeping.  Like any newlywed, sharing a bed required a learning curve I hadn’t anticipated.  But because of his diagnosis, I found that staying in bed with Ben kept me on edge and never allowed me to fully fall asleep.    Whenever Ben moved, jerked a limb, or made any kind of noise, I immediately woke gripped with fear and panic — waking him, too, in the process.

Thus began a habit that lasted a good portion of my early married life.  I would go to sleep with Ben, then eventually move to the couch where I would spend the rest of the night in blissful, ignorant sleep.  But I always kept the bedroom door open so that I could hear, just in case Ben had a seizure, which he did several times each year for the first few years of our marriage.

Before he acquired his brain injury due to status epilepticus (Ben experienced nine seizures in a row which caused his heart to stop and required that he be placed on a respirator for several days), Ben was a successful trombone player who played with many of the major orchestras in the Baltimore and Washington, DC area.  One time we were on an airplane flying to California for Ben to take an orchestra audition.  The plane was about to take off, and in my half-asleep state I noticed something unusual in my peripheral vision.  Ben’s right hand was stuck out straight and was jerking in an unnatural manner.  His eyes were glassy and his breathing seemed labored and unusual.  Fearing that he was about to have a seizure, I immediately yelled, “BEN!” The passengers around us quickly quieted down and I felt as though all eyes were watching us.  Ben turned, oblivious to the fear he had caused me (and the other passengers).  “Are you OK??” I asked in a somewhat frantic voice.  “I was practicing,” he calmly replied, and went back to mentally rehearsing the music in his mind.  That moment, not too distant from our wedding night, clearly demonstrated the physical fear I felt and still experience when I believe my husband is going to have a seizure.

Since his status episode, Ben has had seizures both at night and during the day.  He takes so much anti-seizure medication that it’s fairly unlikely he’ll experience the same kind of seizures that used to cause us both so much anguish and pain.  Yet still I fear.  I’ve found that the best coping mechanism I have is to fall asleep before Ben comes to bed.  Often this means that we go to bed together, talk a bit, and then Ben leaves to read or watch TV downstairs while I fall asleep.  Then he can come back to bed without disturbing me or my sleep.

Hidden disabilities take their toll in many different ways.  As families, we cope, compensate, and make all kinds of strange accommodations to keep our lives as normal as possible.  In my case, one of the best coping mechanisms I have is to go to sleep before my husband goes to bed.

What accommodations does your family make?

Nancy

Contact: Nancy@chosenfamilies.org

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The Light in the Being

I awoke on New Year’s Day with an inexplicable lightness in my spirit. Matt brought me a cup of coffee as I lay in bed (by anyone’s account, a great way to start the day). I am by no means a morning person, needing a good 5 minutes on the edge of the bed with half-closed eyes before I can even set foot in slipper. Which is why the brightness in my voice gave Matt cause to remark, “Well, you’re quite perky this morning!”

I grinned sleepily at him from under the quilt. I couldn’t remember the last time I had felt so…secure. So excited to continue. So ready to run.

“Yes I am!”

“Why? I mean, the present circumstances…”

“You’re right. It’s not exactly logical. But I’m still happy!”

In his brand new Christmas sweater.

On December 27th, Jesse was attached to a spider web of EEG sensors and laying in a hospital bed in order to evaluate him for epilepsy. The report from our Neurologist came through the next day, stating that though we are still waiting for the EEG report, he’s largely convinced Jesse is – like his older brother – also on the autism spectrum (though only a formal ADOS evaluation will tell). Having suffered from a low-grade flare through the holidays, I was beset by daily nosebleeds, including one “hemorrhage” that went on for 5 hours. We had one foot out the door to the E.R. because I looked like the president of some suburban moms fight club. We are moving and between homes. But we’ve recently found out that the contract for our new house may have fallen through too late and that, for most purposes, we’re now technically homeless.

HAPPY. Believe it or not, I am.

If it seems as though my posts take on a somewhat Eyeore-esque self-pitying tone, well then, you got me. I’m prone to listing woes – partly, because listing things helps me remember what needs yet to be tackled, and partly, because Matt and I are convinced we’ve hit the worst of our stretches, until another one comes along. In a way, my listing serves as a reminder that it could always get worse. Here though, there is no self-sympathy. I list to illustrate the illogicality of my happiness.

And to tell you from whence it springs:

“Yet this I call to mind and therefore I have hope: because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” Lamentations 3:22-23.

From the book of Lamentations – which chronicles the destruction of Israel and the horror of their fate after Babylonian invasion – comes an unlikely verse of promise and light. Because of the Lord’s great love, WE ARE NOT CONSUMED.

Because of what God has promised us, we are not consumed by illness or bankruptcy or loneliness or loss. We are not swallowed by the distress of fear or hunger or uncertainty or despair. We are strong in the face of adversity. Our beings are too light to be devoured by the darkness, for God in us is the antidote to every shadow.

To you of the hidden disabilities and the obvious calamities, I wish you a Happy New Year. May you ever fix your eyes on the Lord’s bright promises – those that make you safe, and strong, and swift.

- Sarah

On Finding a Therapist

How do you find a good therapist?  How do you find a counselor within network, close to home or work, and someone who understands the instability of living in a home where hidden disabilities rule?

I have seen at least five therapists over the past few years … sadly, none of them for more than a handful of visits.  My newest therapist, local and covered by my insurance, has repeated the same theme over our last four visits:  “You need to find something  for yourself. Go to a movie, have dinner with friends, find a new hobby.”  I find it hard to believe that after listening to me discuss my trials and challenges, the instability of our life and the intense pressure I feel due to my husband’s limitations, the best advice she has for me is to go to a movie.  She also has mentioned that she feels I should have my cleaning lady come more regularly, and that I should get a massage weekly … clearly, we’re not viewing things through the same financial lens either.

I feel that I am somewhat skilled in explaining what it looks like to live with someone with a hidden disability.  I have been open about my husband’s seizures, brain damage, and memory loss.  While I do seek to protect our family in a public forum such as this one, I have sought to share everything with a few good friends and with the therapists I’ve seen.  I explain the anxiety I feel at the end of each day when I don’t know what things will be like when I come home from work.  I try to explain the weight of responsibility I feel daily as I work with my husband to provide context for him so that he feels less helpless.

I need a therapist who can help me find coping skills for the powerful grief that underpins all that I do.  I need a therapist who can provide me with strategies to overcome my sinful frustration when I have to repeat yet another conversation or help Ben with yet another simple task.  I need a therapist who can help me learn how to handle the guilt I feel when everyone in my house wants to go out and do something (I am the only one who can drive) and all I want to do is stay in.  I need a therapist who understands the instability of living with hidden disabilities and the profound toll this can take on the caregiver.

By God’s grace, my husband has actually found a good therapist.  He feels that his meetings with her are beneficial and are helping him learn coping skills and strategies to accept the limits God has placed on him.  She is not a Christian, but she respects his faith and encourages him in it.  After praying about it, I do not feel it would be wise for me to see the same therapist he does.

How about you?  Do you have a good therapist?  How long did it take you to find her?  Do you think I should try to see the therapist Ben has seen, or to look for someone else?

Or, perhaps, do you think I should just join a book club, spend more time knitting, and go to the movies? –  If so, please call me and we can go together to see the latest chick-flick!

~ Nancy

Preaching in the Valley

In our journey with autism, we are continually amazed at the ways God uses our son Fletcher to preach His word. Our last worship service took place at our local children’s hospital where Brenda and I took Fletcher for an EEG. Before explaining Fletcher’s sermon, I will briefly explain our reason for the visit.

In addition to his autism, Fletcher also struggles with epilepsy. The epilepsy surfaced a couple of years ago when Fletcher experienced a seizure at school that resulted in a trip to the emergency room. A few days later, Fletcher had another seizure and the doctors decided to place him on anti-seizure medication. Since Fletcher is a growing boy, the doctors want to monitor the efficacy of his medicine that can only be accomplished through an EEG.

We arrived at the hospital at 6:30 a.m. and Fletcher’s pensive body language signaled that he had remembered his last trip to the facility. Fletcher’s anxiety initially emerged when the admissions person attempted to place the identification bracelet on his wrist. When the lady produced the bracelet, Fletcher buried his face in my side and hugged me like a desperate man hugs a tree in a tornado. The closer the lady came, the tighter Fletcher clung to his “Dada.” In fear, Fletcher took his refuge in his father.

During that moment, Fletcher embodied Psalm 56:3 which states, “ When I am afraid, I put my trust in you”(ESV). Of course, at the time, I was more concerned with what I would need to do if his test brought disappointing results. How would I be strong for Brenda? What would be our next step in getting Fletch the help he needed? Instead of clinging to Christ, I was contemplating my possible courses of action. Fletcher and I clung desperately to the same person: ME!

It was only after the doctor explained the results of the test to Brenda that I had time to relax and reflect on the day’s events. Fletcher did instinctively what three seminary degrees and a decade of pastoral ministry has still not taught me. When he experienced fear, he clung to his father. As I walk with this red headed speechless preacher through the Valley of Autism, I am amazed at how God uses him to preach His word to me. Hopefully, one day, I will learn to listen.

~ Todd

On Receiving

Over the years, Ben and I have been the recipients of remarkable gifts, grace, and kindness.

It’s overwhelming.  It’s humbling.

In 2001, when my husband was still healthy and working as a professor and professional musician, he experienced a tremendous loss when his instrument was stolen while he was teaching at a local university.  Several weeks later, our Care Group graciously surprised us with an offering they had taken and presented us with a piggy-bank filled with cash in the amount for a new custom trombone.

Eight years later, after undergoing numerous trials and health issues, our Church Group recognized that I was going through Caregiver Burnout.  Wisely, they also noted that Ben was experiencing “patient burnout,” if there is such a thing, and they unexpectedly presented us with a large check to be used for a small vacation for the two of us.

Then, two years later, as Ben sat in the hospital with electrodes in his brain, our pastor presented us with a substantial check to help us with our medical bills.  (Embarassingly, stress from the hospital visit later proved too much; I lost the check and had to humbly ask our pastor to re-write the check after I couldn’t find the “special” place I used to store it).

We have been the recipients of countless meals, gift cards, rides, help from friends…so much help.  It’s humbling.  It’s praise-worthy.

Our previous neighbor spent the past five springs mowing our lawn while Ben was either hospitalized or laid up from seizures.  This past weekend, I came home from a business trip to Chicago to find our NEW neighbor mowing our weed-strewn lawn.

Our “celebrity pastor” sent us a large check with a simple handwritten note from him and his family after Ben’s last hospitalization.  I can only guess that we are not the first recipients of his kind, humble grace.

We are thankful.  We are humbled.

Our families have given us thousands of dollars in cash, countless hours of childcare and help for our other needs and wants.  They have paid for airplane tickets, household appliances, private school tuition, and so much more than words can still express.

As I write this blog post, it’s more than ten years since that initial cash gift was presented to us in a ceramic doggy piggy-bank.  We accepted that money in tears, never expecting how great our needs would become and how our thankfulness would grow.

We are thankful.  We are humbled.

It is never a pleasant place to be the recipients of grace.  I grew up expecting that I would be the GIVER…the one making meals, writing checks in secret, and providing service to the needy.

Today, I am the needy.

My friend brought dinner tonight.  Tomorrow Ben will send an email to our large group of friends asking for rides to physical therapy, doctors’ appointments, and other household errands.  Howard is retired, but he gives up every Tuesday morning to serve our family and give Ben rides anywhere he needs.  Friends and acquaintances have held my hand as I’ve wept tears of grief and anger in countless late night calls and teary-eyed visits.

We are thankful.  We are humbled.

THANK YOU to our village.  Thank you to Don; to Ron and Linda, Beth and Kipp, Dara and Michael, David and Elise, Howard and Arlene, Craig and Kristina, Kinneth and family, Shelley and Don, Pam and Steve, Kim and Wes, Diane and Rob, Laura and Steve, Glenna, Harriet, Silvia, and all of the people at Covenant Life School and church who have helped us along the way.

THANK YOU to our families who have sacrificed so much for us and are there for us every step of the way.

We are thankful.  We are humbled.

God sees.

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.

Or, as my family likes to say, “Everything always works out for the best!”:

 

 

 

On Connections

One thing that links all of us together in community is our ability to form connections with friends and family.  We connect through shared experiences, special conversations, even current events.

My husband, Ben, does not experience the same connectedness in his life.  He does share experiences with people.  But he can’t…connect the dots.  His impaired memory makes it hard for him to remember the last shared experiences or conversations he’s had with the friends in his life.  And so each friendship, each new interaction, provokes anxiety.  I imagine he often feels like someone lost in space.

I am just now realizing the profound level of anxiety that Ben feels on a daily basis.  At the core of his anxiety is an overwhelming sense of his own lack of context.

Ben feels alone and afraid most of the time because he doesn’t have a sense of connectedness to his own life.  He can’t easily remember what he’s done recently or what events are coming up  This leaves him feeling… lost.  Panicked.

This week, God revealed something to me.  Ben and I have been married for almost 20 years.  Contextually, we are one flesh.  People have repeatedly told me that I need to be the leader in our marriage.  But that is not the case at all. I am not Ben’s leader.  I am Ben’s context. I am his connection…to our friends, to our life, to our children.  And sadly, I have not been embracing this role.  I have been rebelling against what I have perceived as Ben’s neediness for me.  But now, I feel as though I can rejoice that we are a couple with a strong context and that I can help Ben to feel more centered, more connected, and less afraid.

A Prayer:     My schedule pulls me from home and from my family daily.  My presence is helpful for Ben.  Because my presence helps Ben feel centered and connected and so much more in control of his own life, I am praying that God would provide a change in circumstances where I might be able to support our family financially and still be home with Ben (and the kids) more than I currently am.

A Praise:     And I am so very, very thankful that my husband has such a strong foundation in the LORD.  He has a simple, easy context with His God.  He has a foundation of Scripture that serves to connect him to the Lord and to other Christians.  Regardless of his memory problems, Ben is most at home in any context that is filled with praise, worship, and devotion to Jesus Christ.

These are the connections that ultimately matter the most.

~Nancy

 

 

On Ebbing (and Flowing)

This week, life is both ebbing and flowing.

I am determined to respond better to my circumstances.  I have put some restrictions in place on my eating, which had gotten out of control with all of my business travel and stress of life.  I am waking early to pray and I am inviting others into my life to actively pray with me.  I have started taking walks in this beautiful weather we’ve been having.

I suppose this is the “flow” portion of my life.  On the “ebbing…”

Things with Ben’s health took a turn for the worse this weekend.  I was in DC for a 5 day conference.  My father took my children and Ben was home alone.  This is the first time we’ve tried this arrangement during my travels.  During the weekend, Ben played two concerts with the Maryland Symphony — work that he absolutely loves and is so thankful to be able to do.  He also experienced at least 9 seizures, if not more.

So life ebbs and flows.  After speaking with Ben and realizing how quickly his health had deteriorated, I was aware of how desperately I wanted to turn to food.  I didn’t.  First I tried to focus on work.  Then I tried to turn to God.  Finally, at night as I lay down to sleep, the tears came fast and quick and unbidden.  I didn’t want to weep.  But the release of tears frees me to pray more.

Another challenging issue facing me is that I need to make new arrangements for my children for after-school.  Ben needs to sleep in the afternoons, and I don’t like my kids coming home to an “empty” house.   One of my children is failing math because  Mom hasn’t been with him after school to supervise homework.  This is a bright child who is always responsible; but his lack of understanding has snowballed each week and he hasn’t wanted anyone to know how lost he is feeling in class so he hasn’t asked for help.  Now I need to find a tutor who can help get him back on grade level.

Ebb and flow.

How thankful I am for Hebrews 6:19, We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain.

Ebb and flow.  But not for our God.

Jesus Christ is the same yesterday and today and forever.

 

~Nancy

On Losing It

Today I told the kids that they could eat whatever they want and watch TV as much as they want all day long without asking me for permission.

I lost it today.  Repeatedly.

I spilled something on the kitchen floor, and then instead of cleaning it up, in a childlike fit of anger I grabbed an open bag of crackers and crumbled them on top of the mess that was already there.  At this point, my children noticed and came over.  “Mom, what are you DOING?” They asked in alarm.  “I’m making a mess,” I calmly told them.  My sensitive child began to cry.  They knew that my behavior was not rational even if my voice was calm and measured.  “Why are you doing this, Mom?  Stop!.”  “I like to clean,” I told my kids as I gave them each a hug. “Cleaning helps calm me down.  So I’m making a small mess so I can have something to clean.  Then I’ll feel better.”  This seemed to pacify both me and the kids, and I did feel better after cleaning the floor.

What does it look like when you lose it?

I am single-parenting a lot lately, which is exhausting as I need to manage my husband from afar and handle my own work load and my three children.  I go on two trips for work next week.  I asked my family to step up and help, but the truth is that they often look to me for every decision they are making which is really not the kind of help that I need.

Is it OK to want someone else to take over for me?  To make my decisions and just HELP?

I suppose these days are OK in moderation.

A friend sent me a much-needed email with portions of Psalm 73.  How timely:

Nevertheless, I am continually with you;
you hold my right hand.
You guide me with your counsel,
and afterward you will receive me to glory.
Whom have I in heaven but you?
And there is nothing on earth that I desire besides you.
My flesh and my heart may fail,
but God is the strength of my heart and my portion forever.
For behold, those who are far from you shall perish;
you put an end to everyone who is unfaithful to you.
But for me it is good to be near God;
I have made the Lord GOD my refuge,
that I may tell of all your works.
(Psalm 73:23-28 ESV)

I will close this weary post not with the wonderful Scripture above, but with my new favorite cookie recipe, from Joanne Fluke’s book “Devil’s Food Cake Murder.”  Scripture is life.  But these cookies … well, if Scripture had flavor and texture, these might be close.  Don’t let the absence of chocolate fool you, they are truly wonderful.

Raspberry Vinegar Cookies

Yields 3 dozen

1 cup butter, softened
1 cup sugar
1 tsp raspberry vinegar
1 tsp baking soda
1 tsp rum extract
1 1/2 cup flour
1  cup chopped almonds (or other nuts)

Preheat oven to (325ºF).
Cream the butter with the sugar. Mix in the vinegar and the baking soda, then the rum extract. Add the flour, and stir until well incorporated.
Line four baking sheets with parchment paper. Drop tablespoonfuls of cookie dough onto the sheets, spacing them out (about 12 cookies per sheet).
Bake the cookies in batches for around 18 minutes, until golden around the edges and on top. Let cool on sheets for two minutes, then transfer the cookies to a wire rack and cool completely.
Store in an airtight container (if there are any left!)

 

~ Nancy

On Anniversaries

This week, as I approach March 5th, I am mourning the loss of my beloved mother.

This week marks the 10th anniversary of my mother’s death to breast cancer.  It also marks the 8th anniversary of Ben’s life-altering status epilepticus and subsequent memory loss/amnesia (strangely, they don’t make a mug for that!).

These two events are forever linked in my mind.  Ben experienced a fairly large seizure while we were visiting my parents the night that my mom received her cancer diagnosis.  Though my mom knew about Ben’s epilepsy, she also knew him as a healthy, thriving musician, doctoral student, and college teacher.  I don’t think any of us could have envisioned the changes we would experience in our lives due to Ben’s seizures.

It is inconceivable to me that I have been through so many unimaginable, life-altering experiences since my mother died.  I often wonder if it was God’s mercy in taking her before Ben got sick so that she didn’t have to see us suffer.  But I also know how much I miss her.  I wish I could call her for support.  I wish I could call her and cry.   I can’t believe the things I’ve lived through without my mom knowing about it.  She would not recognize my life.

There is an old Bette Midler song from her 1990 album “Some People’s Lives” that has always moved me: “Since You Stayed Here” (click on the link to listen).  It’s a song about a break-up, but it seems appropriate to post on this anniversary of my mother’s passing away.  The lyrics are:

You’d never recognize the room. The pictures all have different frames now. And all the chairs are rearranged now. Somehow, I’ve thrown out every souvenir. Yes, there’ve been changes made since you stayed here.
You’d never recognize the street. The neighbor’s kids play different games now. The colors in the trees have changed now. Strange how I’ve hardly thought of you this year.  Yes, there’ve been changes made since you stayed here.
The same address, the more or less. More happens, less matters, I guess.
You’d never recognize my life. The party-givers know my name now. And when I cry it’s not the same now. Somehow, I never waste a single tear. Yes, there’ve been changes made since you stayed here.

Dear Mom,

Since you’ve been gone, I’ve walked a road I never could have imagined.

I moved to a new house.  I gave birth to a daughter who I named in your memory.  I’ve remained married to a man who has suffered incredible physical, emotional, and neurological damage…and despite the bumpy road, we are still best friends!  We’ve battled addiction and depression, hospitalizations and brain surgeries .  Dad remarried.  Gary got married.  I went back to work, starting several new jobs in different careers.  And the kids…oh Mom, they have grown!  Emily is almost a teenager and she’s beautiful and smart.  Joel is everyone’s friend…not at all like the screaming infant he was when you last saw him.  And Meg…well, you never met her, but she is the most dynamic, active, intensely joyful seven year old you’ve ever met.  Our kids are kind.  And they’re funny.  You would love them.

Here is what they look like today.  Aren’t they beautiful:

I am not the same person I was when you died, Mom.  But because God holds me in His hand, I think I am growing more into his image.

I miss you, but rejoice to know I’ll see you again in heaven.

Love, nancy

Please join me on March 5th in remembering my wonderful mother, Myrna Goodman Ginstling.  Her faith helped bring me to the Lord and her perseverance through trials set an example for me and for so many others.

And on March 8th, join me and my family as we celebrate with our annual “Ben is Alive” party.  Anniversaries may be painful, but we do our best to give thanks as we remember all that the Lord has done in our lives.  It’s not always easy, but He walks with us every step of the way.

I remember the days of old;
I meditate on all that you have done;
I ponder the work of your hands.
(Psalm 143:5 ESV)