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.

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

Sorrow and Grace

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

On Handling Unpleasant Emotions

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

Beautiful child in the darkness

Sometimes in the dark valleys of my life, slogging through the muck and mire of motherhood, I resist the suffering and pain in my child’s life and cry out, “Why must we pay so dearly for other people’s sin and bad choices???”

Every day my child and I reap ten-fold the sin and destruction sown by a confused young girl in a broken country half way around the world.  He sees the world as against him – because it was those first two years in an orphanage when he was forming his lens though which he would look at the world the rest of his life.  He wants to control…me, his sibling, his teachers, his world – because he couldn’t control his life as a baby and he almost died of starvation, sickness and neglect.  He rejects my love, because when adults should have met his needs, he was left to cry until he gave up, so adults are not to be trusted.  (Pity the poor orphanage worker whose job it was to care for 12 starving and sick babies – did the crying ever stop??)

Why should my beautiful child write in huge letters at the therapist’s office, “I am WORTHLESS”?  His young mother’s inability to care for him makes him believe he is not worth caring for… and subconsciously he is trying to get us, his parents, to validate this with his provoking behavior. “I hate you!” he screams at me as he smashes the picture of our new family on the day we took him out of the orphanage.  Later, he admits that he really hates himself (because she, his birthmother, didn’t love him.)

And I, the mother who quit her career to mother him, feel worthless myself, because all the love I have poured into him has not healed the gaping emotional wounds of those first two years.  I cry out to God in my distress (“why is it so hard? will he ever heal?”), my confusion (“is there something else I should or could be doing?”), my fear (“his anger scares me, what will become of him? will he ever truly love?”)

Then, I am drawn again to Jesus, who also paid so dearly for the sins of others.  “Surely our griefs He Himself bore and our sorrows He carried…. But He was pierced through for our transgressions.  He was crushed for our iniquities.  The chastening for our well being fell upon Him and by His scourging we are healed.” (Isaiah 53: 4-5).

And, still in the dark with my wounded child, I am comforted.

~ Trauma Mama

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)

It’s Not Working

These last few months have been a real bummer in our marriage. Not exactly the uplifting words you’d like to see?  Me either. But it’s the truth. At the moment.

My husband was experiencing severe fatigue, and after a bunch of tests, it seemed perhaps his meds needed to be lowered. These would be the meds that keep him from going into inner or outer orbit, mood-wise.  When my husband gets off kilter, his perceptions get distorted and he feels I am targeting him, disrespecting him. Actually, it’s the reverse. And it’s bad. SOOO, my protective husband explained to the doctor that we (marriage wise) were doing really well and he did NOT want to jeopardize that. I thanked Jesus as I heard those insightful, sheltering words.  My dear man was doing what he could, while clear headed, to protect me. It’s been a long journey to get here. We all discussed this quite sanely, in the doctor’s office, and then proceeded to start the experiment.

I’m thinking, of course, “we’ve gotten pretty good at this – I’ll just give a little bit of feedback, if needed, we’ll course correct, and that’s that.”  Although,  I know, from experience, that if I miss that little window – where he’s off course, but still able to absorb my input – the only way he’s going to figure out things are not working, is when the plane crashes and burns (our marriage). But hey, sometimes there just aren’t any GOOD options….

Of course, during this, there was this huge deadline at work piled onto the daily international drama … and then two major holidays, lots of travel, and somewhere in the mess, it got harder and harder to connect. I tried the usual “reconnect” relationship stuff – (you cannot BELIEVE how many marriage seminars we’ve been to) — And I said the various things I say, like, “Hm, wonder if meds need changing?” I jumped up and down to force a bit of time off for the holidays. I tried to rule out everything else (including my own stuff) before confronting him with the dreaded words: “Honey, I think you are a little hypomanic.” Too late.

I bet there’s not a bipolar out there who wants to hear those wing-clipping words, and who LOVES the person saying them. At these times I feel like the ground crew at the airport, trying to wave off the crash landing of a jumbo airliner  –“Flight 29 Heavy, wave off!” (and let’s just be clear – anytime the head of the home crashes, it’s jumbo size.) Once the crash is over, and they clear the debris, there I am, a greasy spot on the runway.

If there was a window back there, I missed it. Let’s just say, there’s been a partial crash landing (yes, it can be partial) and the fire trucks are rolled out, pouring water on the flames. God’s family has been my dear medics, bandaging my burns. Of course, we will go back to the original med doses, and reconstruct. I’m not a cussing woman, but here’s where I’d cuss if I did.

After sobbing for a few hours last night, I rolled over this morning. My Bible was lying next to me, where my husband should’ve been this last week. All I could moan was, “I gotta have a WORD from You.” It was open to Isaiah 25.

I will give thanks to Your name (no, I’m not there yet)

for You have worked wonders (no “wonders” around here),

plans formed long ago, with perfect faithfulness. (this is “perfect”??)

For You have been a defense for the helpless (yes … that’s true, I am helpless to stop this … but it’s true, You have defended me before),

a defense for the needy in her distress, a refuge from the storm, a shade from the heat…(“yes, yes, yes, yes” to needy, distress, storm, heat)

He will swallow up death for all time (even death of my dreams), and the Lord GOD will wipe tears away from all faces. (that’s an intimate, tender visual – You close enough to my face to use Your fingers to personally wipe away my streaming tears)

And it will be said in that day (which can’t come soon enough), “Behold, THIS is our God for whom we have waited that He might save us. THIS is the LORD for whom we have waited….”

Is 25: 1, 4, 8, 9

Waiting,

Joan

Embracing Reality

Taste and see that the LORD is good; blessed is the man who takes refuge in him.

Psalm 34:8

I hit an emotional low recently.

It came after a busy week, full of the normal routine plus a few extra projects and activities (ministry related), coupled with loss of sleep thanks to the nagging coughs of my two sweet children.

I have learned, and perhaps you have too, that physical, emotional and spiritual exhaustion often, if not always, come hand in hand.   I have learned this through three bouts of major depression, counseling and growing self-awareness in each season of life.

So physically exhausted, and still in the process of refilling my spiritual tanks, I approached a known, yet unavoidable, emotionally draining event.

As many of you know, I suffered a miscarriage this past June. (Related post.)  Grieving is a process and moments of deep sadness and/or crying can come rather unexpectedly.  I try to embrace them, rather than hurry them, no matter how painful and include the Lord in my grieving.

While I am aware of “due date depression” associated with miscarriage and pregnancy loss, I also suspected the arrival of my best friend’s baby could be difficult.  We were both unexpectedly pregnant with our third child and ecstatic to finally be pregnant together.

On the eve of the scheduled delivery, I was praying for my friend (and baby) with my 4½-year-old daughter (with sensory processing disorder) before bed.  She was very upset that their baby gets to come to earth first, instead of going right to heaven, and shared how upset she would be if the baby was a girl. (She REALLY wanted a sister.)  We had a “heart to heart” and prayed some more.

With my physical, spiritual and now emotional fatigue, I awaited the news of my friend’s little one the next morning.  I had to trust the Lord would continue to help us all through the grieving process, no matter what the sex of the baby.

I received a text announcing a healthy little boy joined his big brother and sister and burst into sobbing tears that lasted on and off the better part of the morning.  They were tears of relief (it was a boy!), joy for my friend and her family and grief that we will not be looking forward to the same excitement in 9 weeks.

In the midst of all of the emotions I was feeling, the Lord met me as I continued to grieve with hope.  Sure, the rest of the day was hard, but I woke up the next morning with a little more strength and hope. I took it easy the rest of the weekend and within a few days, I was stronger and feeling more myself.

We must continue to embrace our “earthly” reality, but never to the exclusion of the ultimate reality of God’s promise and provision for us, His children. This is not our home – we were made for eternity.

In His refuge,

~Lynn

 

Cuts Like a Knife

I have learned, as all parents must, that there comes a day when the pain you experience for your child because of their wounding is greater than anything you’ve ever endured yourself. It’s the look of dejection that follows his last-place selection for kickball, or the crestfallen explanation that someone tore his picture in art class.

Or, in my case, nothing more than a simple conversation on the way to school.

This day, Noah is grating his sister, repeating nonsense in her ear until she screams in protest. It continues for a good 10 minutes, this routine that makes up the majority of every day in our lives. He loves loud noises, and this, in combination with his compulsive tendencies drives him without end to hear her scream.

“Noah, if I have to ask you again, you’re going to lose your DS privileges after school!”

I normally get about 60 seconds of peace with this threat before the cycle starts again. Today however, there are more than a few minutes of total silence – uncommon in our car when Noah is a passenger, as he routinely floods us with a stream of words from start to journey’s end.

So naturally, I’m suspicious.

“Noah, you seem sad honey. What’s the matter?”

“I don’t know. I can’t tell why I’m sad.” Noah is looking out the window, backpack in his lap.

“Well, is it because daddy’s traveling?”

“Maybe.” His answer is unconvincing.

“It’s overcast today. Maybe you’re a little sad because the sun isn’t shining.”

“Nah.” More silence.

“Mom? When I grow up, will I still be autistic?”

I look up at him in the rearview mirror. I know where this is headed. I start praying for wisdom, thinking this could be a “make or break” conversation and that because I haven’t even had my coffee yet, I am woefully un-prepared for something of a life changing nature.

“Yes, honey. There is no cure for autism. But, the Lord was good – you got an early diagnosis, and you have wonderful doctors, and therapists, and teachers. And Noah, I think God is going to do something amazing with your life because of how wonderful and unique he made you.”

His eyes are welling with tears but he never turns from the window. “Mom, I don’t want to be autistic any more. I want to be like all the other kids.”

The sharp edge of grief cuts me so quickly I am almost breathless with sadness for him. I love him with such ardor that if God were in a position to bargain with me, I would take on a hundred injuries of my own to shield him from his sorrow.

But grief is a constituent of our lives. We are promised it (John 16:33). And so I have to let Noah cry in the backseat on a rainy Tuesday because aside from encouraging him, comforting him, and loving him, the battle to understand and accept the way God made him is his alone.

If only it didn’t hurt so much.

-Sarah

Pressing On

And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Romans 5:2-5

In my last post, I shared about our recent miscarriage and how God has been with us in amazing ways throughout the process.

I think one of the hardest parts of the whole experience has been the utter shock of it all.  We went from the total shock of being pregnant, to the shock of losing the baby in less than six weeks, after the baby seemed to be developing normally.

The challenge was (and is) making sense of it all.  Sure there were probably medical explanations for what happened, but even with those, the bigger ache was the truth that God allowed this to happen.  Since we believe that God could have intervened by preventing or correcting problems with the baby’s development, how are we going to respond that He chose not to?

In my shock and numbness, I went to see my counselor who has supported me through the three bouts of major depression I experienced in my twenties.  I talked about what I was thinking, my challenge to understand it and my fear that this would send me into another bout of depression.

However as I talked to her, I couldn’t help but recall so many of the amazing things God has done in my sweet family and me.  I was so aware of God’s grace and mercy, in big and small ways, in my life over the years.  Why did He choose to help my husband and me break free from some of the unhealthy and destructive patterns that have plagued our families for generations?

I knew I was blessed beyond measure by His goodness and love even if I wasn’t able to “feel” it at the moment.  I knew what the Scriptures said about God’s nature, and if I personally knew Him to be loving and gracious up until this point, how could I accept any conclusion contrary to this now?

Despite my pain and lack of understanding, I chose to focus on what I did (and do) understand.

  • We live in a world that has been completely affected by sin which causes death.  We were never intended to die or experience death, as God is the giver of life.  (Genesis 3:17; Romans 5:12; 8:19-22)
  • God is good and never forsakes His children whom He loves with an everlasting love.  (1 John 4:8,16; 2 Corinthians 13:11)
  • God is faithful (1 Thessalonians 5:24; 1 Corinthians 1:9; 2 Timothy 2:13)
  • God is unchanging (James 1:17; Psalm 102:26-27; Malachi 3:6)
  • God redeems our suffering for our good. (Romans 5:3-5; Romans 8:28)

So I believe that God shares our grief for the loss of our baby, because it was not what He intended, but a result of the fallen world in which we live.  While He could have intervened to prevent this outcome, He chose to let things happen naturally.  In some way, this was a loving act towards us, His beloved children. (Honestly, I would rather lose a baby at 10 weeks than even later in my pregnancy or after birth.)

While I would never have chosen to go through this, I can already see how I have grown closer to the Lord and the hope I have gained.  I also have the ability to come alongside others who have suffered a miscarriage with great empathy and have already done so.

Even in the painful moments that periodically arise, when I am sad and mourning the loss of our baby and shattered dreams, I choose to trust my loving Heavenly Father.  It requires faith, but I don’t know any other way.

Pressing on,

Lynn

 

God Keeps His Promises

Now it is God who makes both us (Paul, Silas & Timothy) and you stand firm in Christ. He anointed us, set his seal of ownership on us, and put his Spirit in our hearts as a deposit, guaranteeing what is to come.
2 Corinthians 1:21-22

I am finally ready to share about a very painful experience my family and I went through recently. It is not an easy story to tell, but woven in the details and pain, has been and continues to be, a very loving and gracious God who has taught us in a deeper way what it means that He is Immanuel, “God with us.”

********************

When I suspected I was pregnant with our third child, I was shocked since I had finally just convinced my husband that we were done having children: blessed with our daughter (4) and son (1). Although we had always wanted three children, the challenges associated with Gracie’s sensory processing disorder (SPD) helped to change my mind.

It took a week of panic and prayer to work through my fears until we took the test confirming my pregnancy. With my anxiety under control (for the time being at least!) I became very, very excited.

It was then I recalled what the Lord had spoken to my husband during his devotions about two months prior. He told my husband that we were going to go through a trial but to “fear not because I will get you through it.” Trent was pretty sure the trial had to do with one of our kids. I panicked because I figured a trial with Gracie or Ben that necessitated a prior warning and extra assurance could not be good. I wrestled with the Lord about this for three days until I found peace that whatever happened, He promised to get us through it. After all, these were his children, not mine, with which we had been entrusted.

With a new child in the picture, we wondered if the trial could be with the one in my womb after we realized this was spoken only two weeks before the baby was conceived. But we had such an overwhelming sense that this baby was a special gift from God since we were actively taking measures to prevent another pregnancy. I remember telling Trent that “I don’t think I could handle it if something happened to this baby. I want this baby.”

I continued to experience ‘all day’ sickness and the extreme fatigue associated with pregnancy. My first doctor’s appointment went well. I heard the heartbeat; such a precious sound of life and was even able to get an ultrasound picture of our little ‘lima bean’ to confirm the due date.

Our excitement grew as I envisioned our family of five. I no longer viewed Ben as the youngest child, but as a great big brother. I was excited and we started talking about names and the future.

Two weeks later, Gracie prayed to receive Jesus and forgiveness for her sin. I was caught off guard as a normal spiritual conversation ended with her praying a beautiful prayer thanking Jesus for what He did on the cross. We immediately saw evidence of the Holy Spirit in her life and rejoiced over her new life in Christ.

THEN…. exactly one week later, I woke up to some slight spotting and of course feared the worst, since I had never experienced that with my other two pregnancies. While not necessarily bad, my fears did come true. I miscarried late that evening and ended up in the ER.

It was one of the worst experiences of my life so far.

I know many of you have experienced a miscarriage since about 20% of all pregnancies end this way. It was scary and in the middle of it, I once again recalled the warning the Lord had given my husband. I asked Trent to repeat exactly what the Lord had spoken to him. “Fear not because He will get us through it.” We both wept.

Once the physical process of the miscarriage was over, we immediately dreaded telling our daughter who was the most excited for this baby. We prayed that the Lord would go before us and prepare her heart for the news our baby was now with Jesus.

When she woke up the next morning, we told her the news. She was quiet and asked a few questions. It went better than we expected and we thanked the Lord.

The next day, out of the blue, she said, “I’m sure our baby was a girl and that she’s having fun with Jesus and he’s taking good care of her. We don’t have to be sad, we can ask God to tell her she has a family here who loves her.”

I cried in disbelief that our 4 year old could share such a comforting and profoundly true word with us. Even as I write now, two months later, I am just as amazed by her words.

Because of my history with depression, I began taking an antidepressant the day after my miscarriage, since I was off it while pregnant. It took a full four weeks to regain my physical strength and begin to truly grasp all that happened.

Grief is definitely a process, but we grieve with hope, hope of one day being reunited with the precious little one we will not meet here on earth.

God kept his word; He is getting us through and offers you the same promise. No matter what you are facing today, “fear not” because He will get YOU through it.

~Lynn