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An Unconventional Father’s Day

I wrote this article a year ago. It takes a look back (almost 25 years now) to a time filled with great anticipation and excitement. David and I had been married five years when the events described took place – events that became defining moments in our lives in ways we never could have foreseen.

A silent shift occurs within as the last day of the calendar month of May is torn away. We are propelled into June, and weddings, which serve as a smoke screen of sorts for me as the countdown to Father’s Day begins. When May turns to June, the reel of memories begins running complete with the clacking sound of film spinning and flickering projector light. The film runs on repeat in my mind day after day as the calendar marches ever onward. Why don’t you come along for the ride?

https://boxxbanter.com/?s=An+unconventional+Father%27s+Day

 
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Posted by on June 14, 2017 in Adversity

 

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A Life Deeply Mourned & Celebrated*

Stillbirths: How a New Openness Helps Parents Cope is an insightful article originally published in Newsweek Magazine January 30, 2009. Click on the link above to read the article. It reflects a much needed and long awaited trend toward ending the silence surrounding stillbirth. In fact, in recent years the term ‘stillborn’ has been replaced with ‘born still’. It’s a small but significant change as it demands acknowledgement of the existence and value of the deceased child.

The article is more than facts and statistics. It includes personal stories and introduces an organization dedicated to helping hurting families hold onto the children who have left their arms but not their hearts.

Never their hearts.

How I wish Now I Lay Me Down to Sleep existed in 1992. I’m so thankful it is available to families today. In 1992 David and I were encouraged to hold our newborn son and I’m glad I did. You just always wish for more. . . to know the color of their eyes, the sound of their voice, the feel of their tiny hand wrapped around your finger, wiggling toes . . . memories to hold onto.

Anticipation is making me wait for that moment promised in 1 Corinthians 13:12:

“For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”

When Cole was born, by all accounts healthy, just weeks before his due date; there weren’t many support groups available specifically for bereaved parents of infants. Fortunately, that is no longer the case**. The books on the market focused on miscarriage, a worthy subject and a far more common form of child loss, barely gave a nod to the subject of stillbirth.

I was rocked by the fact that my son was healthy . . . but dead. Healthy and dead. The two are simply incompatible; yet it was true. It never dawned on me when I prayed for a healthy baby that I needed to pray for a living, breathing baby at the same time. I never made that mistake again; I assure you.

I felt very much alone.

Those who had previously experienced early miscarriage expected me to quickly move past my grief. Nobody wanted to talk about my son. It felt as if people wanted me to pretend the previous nine months had never happened. And of course the obligatory comments designed to offer hope and comfort were extended. “You can have another baby.”, “This was God’s way of taking care of an unhealthy child.” I wonder if those who offered that last bit of wisdom recognize the irony of it in light of the fact that I later gave birth to two children with a rare form of Muscular Dystrophy? I doubt it. They probably don’t remember saying those words, although I certainly recall hearing them. That’s not meant to be snarky. For some it’s better if they don’t remember; their intention was good. For others, remembering may help them recognize it is untrue and better left unspoken.

Stillborn The Invisible Death was the only resource I found dedicated solely to the topic of stillbirth. It was a painful and cathartic read for me. I’d pick it up and read until my heart hurt so badly I had to cast it aside. But it kept drawing me back. It was one of the few places I heard the barest whisper of, “Yes, that’s it. That’s how I feel!” It was heartrending. It was validating and affirming. My experiences with friends & family, emotions, and subsequent pregnancies were clear reflections of those portrayed in the book. I was not nearly as alone as I felt. I wasn’t crazy, paranoid, or ultra-sensitive. I was very, very normal.

The book is a compilation of survey responses by bereaved parents. But this editorial review found in Library Journal gives a far better description of the book than I can relate 24 years after the fact:

“According to the National Center for Health Statistics, 33,000 babies are stillborn each year. For the parents who experience this traumatic event, and for familes, friends, and professionals, this book offers understanding, hope, and comfort. Drawing on the moving and eloquent testimony of 350 parents of stillborn babies, it explores such topics as blame, shock, and guilt; seeing, holding, and remembering the baby; the autopsy and funeral; effects on family relationships, including moving and divorce; thoughts of suicide; increased substance abuse; surviving children and subsequent pregnancies; returning to normal; and reaching out to others. An empathic and compassionate book that would have been enhanced by a list of support groups and resource organizations.Nevertheless recommended. Jodith Janes, University Hospitals of Cleveland Lib.”

These many years later, I’d still recommend this book to bereaved parents who’ve experienced the birth of a stillborn child.

Seriously, follow the link above and read the Newsweek article. You never know when stillbirth might touch your life or that of someone you love. You never know when you might be called upon to minister to, or encourage, an individual or family living in the deepest, darkest grief following the ninth hour loss of the child they’ve dreamed of and prepared for. You never know . . . maybe you should.

 

*Newsweek article paraphrase

**A multitude of support groups (both online and face to face) can be found via internet search. I’m partial to While We’re Waiting, an organization dedicated to ministering to bereaved parents. Please see whilewerewaiting.org to find out about the free services offered to grieving parents.

 
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Posted by on September 26, 2016 in Grief, Muscular Dystrophy

 

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Thirty Minutes

hourglassI had a biopsy Tuesday. I was a bit surprised when the doctor told me that I had handled the news that the biopsy was necessary in an appropriate manner – in other words – he was glad I didn’t freak out. This is the fourth time I’ve had to have follow-up appointments when the initial tests revealed unexpected results ATA (after the accident).

I find that ATA I am no longer shocked or surprised by disconcerting news. I’ve just adopted a low-level of expectation mixed with a high-level of resignation.

The nurse told me prior to the procedure that they do a lot of these biopsies and that a cancer diagnosis is very rare. My tongue-in-cheek response was, “Please don’t use that word rare. I’ve found that if it’s rare it happens to me.” Stillbirth is rare. ARSACS is rare. Losing two children in a car accident, while not unusual, is also rather rare among the population.

The biopsy wasn’t as uncomfortable as I expected in spite of finding that the pre-procedure medication hadn’t quite done the job it was designed to do. An additional step was required, which the nurse assured me was NOT a rare occurrence. The three of us, the doctor, nurse and I actually found a host of things to laugh about throughout the process.

As I left the clinic Tuesday afternoon I found myself thinking, ‘This is the most normal I have felt ATA.’ It wasn’t that I escaped the awareness of Bethany and Katie’s deaths. Nor did I forget Gracen’s disease and her prognosis. Those things are simply deeply ingrained in my being. They are ever before me. They have shaped me in so many ways. They color my perception of everything I see, hear and experience.

I don’t really know what made the interaction with my doctor and nurse different than all the interaction I have had with others ATA. Maybe. . . hopefully. . .  it reflects that a measure of heart-healing has taken place. I am both hopeful and wary of finding out if that will prove to be true.

clocksIt was a period of time in which feeling good (in spite of the fact that I was having a biopsy and all that implies) didn’t feel bad – didn’t feel as if laughing or smiling or enjoying simple conversation diminished the inherent value of my daughters. There was no guilt – no shame – and believe me I found many a reason to feel both of those things!

It was thirty minutes, not of escape, but of the assurance that there could and maybe even would be more moments like this. Moments when each one of my children is a joyful part of me, not simply a bitter or wounded reminder that life is not what I hoped, expected or dreamed it would be.

I fear I’m not describing these moments well at all, but suffice it to say that it was the first time that I discovered that living another day might not be so bad. That I might eventually enjoy life again. Not the naive existence I walked before Cole was stillborn, before Gracen and Katie were diagnosed, before Bethany and Katie died, before Gracen survived even as her health continues to deteriorate. No, it was a glimpse of what might be possible in spite of all those other things.

For thirty minutes of my life Tuesday . . . I felt free.

I felt for the first time as if God just might have some good plan for me in the here and now; not just my eternal future. Believe me when I say that I have long known intellectually that God cares about my here and now as well as my eternity, but it’s the first time I actually felt as if that was true. Finding any single occurrence where my mind and my feelings agree is huge for me.

HUGE!

For two and a half long years I have struggled to find a way to make my mind and emotions agree . . . and I’ve failed miserably. I honestly don’t think it’s something I have any power over. I think that’s the Holy Spirit’s job, so I don’t believe I’m a failure. I do, however, think the Holy Spirit is meticulous and that takes time – more time than I have the patience for.

So for now . . . all I want to do is bask in the thirty minutes of freedom I experienced.

30-minutes-400x234-1_1Those thirty minutes were worth waking up Tuesday.

Worth getting showered and dressed.

Worth having a biopsy.

Those thirty minutes. . .

That feeling of freedom . . .

it’s priceless.

 
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Posted by on September 7, 2016 in Adversity, Faith, Grief, Muscular Dystrophy

 

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Birthday Reflections – Guilt & Shame

 

il_570xN.838650199_lubbToday is my one and only son’s birthday. If you read my Father’s Day post you know that he was, in the terminology of the latest trend, born still – a cord death. Cole did not die on the day of his birth. I always knew that. David and I were drawn to the hospital because I quit feeling him move. But even I didn’t originally know when he died.

I’m not sure how long after his death it was that I discovered exactly when he died, but it was an innocent comment made by my mother that truly rocked my world.

She was in my home and all she said was, “I remember you telling me that the baby was moving really funny.” Those words triggered that movie-like effect, you know the one where past events scroll by the screen at warp speed and a replay begins of that exact moment in the character’s past. And I was instantly transported back . . . There I stood in my parent’s living room in front of their green velvet love seat. It was about 5:30 p.m. on Thursday, June 18th. I can see it in my mind’s eye looking on as if I was standing mere feet away from my extremely pregnant self.

I’d driven there after work in order to bring my mom some fabric which she was to sew into a balloon shade for the baby room David and I had set up in our home. It was a simple blue and white pinstripe and matched the Paddington Bear pattern of the bedding we’d selected. And then I said it, “Mom, the baby’s moving really funny.” It echoes through my mind even 24 years later. My mother replied, “Why don’t you lay down and maybe it will stop in a moment.” Cringe worthy advice looking back, for indeed the strange movements I felt did indeed stop shortly thereafter. And only in hindsight, only when my Mother spoke those innocent words after my only child (at the time) was long buried, did I realize the significance of those words that began, “I remember you saying . . . ”

Unbeknownst to my Mother, she filled in the blanks and devastated me all with one simple sentence. It was at that very moment, now standing in my own living room in which I realized for the very first time that I not only knew exactly when my child died but that I did nothing – NOTHING! – NOT ONE DAMN THING! – to save him. It was in that instant that I could finally find words to describe the strange way my son was moving within my womb. Thrashing. That is the only word that accurately describes those strange, unnamed movements.

FullSizeRender (15)I knew with certainty then that I had felt my child dying; thrashing as the cord that was wrapped around his arm pulled tight around his throat and he fought life. And that devastating moment began the completely irrational guilt/shame cycle I struggled to overcome for years in spite of knowing full well from an intellectual standpoint that had I known what was happening, I would not have been able to save him. There was no way to get to the hospital, to have my son delivered, before his death. No possible way.

But guilt and shame are all too common experiences in the parent loss community. Far too common. We kick ourselves for what we perceive as poor choices in spite of the fact that there was no earthly way of knowing what was to come and therefore, intervening in the unacceptable destiny about to play out in our children’s lives. Instead, we beat ourselves up and ask ourselves, “What kind of parent/mother/father am I?” And the only possible internal answer is, of course, “A bad one”.

But we all need someone to blame, someone to be held accountable, and for many broken believers, the heart simply cannot handle even the thought that our child’s death may have been part of God’s plan – let alone His will. It is far easier to blame ourselves than to rock the very foundations upon which our belief in a loving God resides. Not that we are any more capable of preventing that either. When a large part of your world is destroyed the impact is insidiously complete as wave upon wave of grief batters the broken heart.

Just as few people knew that I felt my one and only son, my firstborn child, strangle to death within the ironically protective environment of my womb, few people realize that we debated the trip to Kansas City for Christmas the year my oldest and youngest daughters died.

Bethany, my oldest daughter, had so much going on in the days prior to her death.  Tons of angst over school and changes in living arrangements she wanted to make, finances, and Alex, her boyfriend’s uncertain return to UCA.  Her life was in complete turmoil and I was helpless to make it better for her. It seemed what might be best for Bethany would be for us to stay home in Bentonville that Christmas, but that was not what was best for the rest of the family and not best for O’rane (the international student spending the holiday with us). Still, I took her aside a day or two before we left for KC and asked her if she would prefer to stay home.  I would have chosen to remain in NW Arkansas if that would have made her more comfortable.  No one else would have been too keen on that plan, but I had every intention of honoring her wishes had she indicated that she would prefer to stay home.

What I wouldn’t give to have simply stayed home.

I’m considerably older and a bit wiser than I was 24 years ago, but those old demons of guilt and shame have still plagued my days in the aftermath of Bethany & Katie’s deaths. Despite that fact that I had no power whatsoever to prevent any of the tragic circumstances of my life the broken heart is laid bare and vulnerable to the fiery arrows Satan takes such delight in unloading upon the weak.

Maybe just revealing that truth will help another broken-hearted parent caught in the guilt and shame cycle put to rest the irrational personal judgments they have leveled against themselves or a spouse. Maybe it will enable them to see that what the scriptures say is true – that Satan is a thief and a liar bent on our destruction and there is no limit to the devices he will employ to do just that.

Maybe the disclosure of my illogical feelings will enable another parent to make peace with the equally truthful scriptural revelation that our days are numbered prior to our birth; it was never in our power to extend the lives of our children, regardless of the circumstances of their death. There are simply things in this life that are pre-ordained and while that can be a devastating truth it can also be a great comfort, because aside from parents who with knowledge took the lives of their own children; the vast majority of parents have consistently acted in the best interest of their children. And with grace, those whose actions result in godly conviction (i.e., not undeserved guilt) there is repentance, forgiveness, restoration and reconciliation through faith in Christ Jesus.

The road is long and dark – but grief embraced, worked through (not short-circuited by positive thinking) – can find health and healing.

Oh, you never forget. And there never comes a day when the death of your child is justified by spiritual growth or ministry. Those things are just the result of God taking a bad thing and performing a work of redemption not somehow transforming that bad thing into a good thing. God brings good from Satan’s evil actions and intentions, He doesn’t justify Satan’s evil actions and intentions. That’s a very fine distinction, but an extremely important one nonetheless.  All things work together for good, not all things are made good.

So while this day is filled with bitter longing and remembrance it is also a day in which I know I can trust that this is not the end of the story. This Kenny Chesney song, “Who You’d Be Today” is reflective of that intense longing and bitter disappointment I feel. But it also reminds me that one day I will know who each of my children would have been because I will see them again. I will know them and they will know me in perfection, the way we were created to be before the fall of man. We will be like Him – the one who sacrificed His life and endured for the joy set before Him.

“Who You’d Be Today” by Kenny Chesney

And the lyrics to “Held” by Natalie Grant remind me of the things God did not promise me — but also that He has promised to hold me through all the bitterness this life brings. “Can I not wait, for one hour (albeit a very long hour), watching for my Savior? (Paraphrased)”  Partial lyrics can be found beneath the youtube link.

“Held” by Natalie Grant

Partial lyrics, “Held” by Natalie Grant:

IMG_1111“This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held

If hope if born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior”

 
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Posted by on June 21, 2016 in Grief, Music

 

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An Unconventional Father’s Day

deliveryman

I awoke alone in a hospital bed to a bright morning after a flurry of activity the night before.

smallfeetMy husband’s first Father’s Day.

A nurse stopped by and then a doctor both of whom introduced themselves — shift change had occurred and I had a whole new team of medical care providers.

Then David entered my room looking tired having left late the night before to catch what sleep he could find.

I was checked to determine if the medication I’d been given the night before had resulted in sufficient effacement in preparation for delivery before a Pitocin drip was started to induce labor. David sat silently at my side holding my hand after a monitor was strapped around my burgeoning waistline to measure contractions. We were then left alone to stilted and quiet communication as we watched the monitor record the Pitocin-induced contractions.

David developed a quick rapport with Mary, my daytime nurse, as she popped in and out of my room at regular intervals. Pitocin generates stronger contractions than a woman experiences when she goes into labor on her own, so I was given a medication to dull the pain which left me nauseous. I curled in upon myself and closed my eyes to get what rest I could.

Shortly after noon, David’s Mom arrived at the hospital. I don’t know how long she stayed as she sat quietly with David while I simply tried to shut out the world and ignore my nausea. Then a group of ladies from my church appeared. While appreciating their presence, not being at my best I really didn’t want to see anyone but neither David, nor I was equipped to send them away. They waited a considerable amount of time before I agreed to see them.

Finally, I progressed to the point of delivery. The doctor prepped us for unexpected things we might see after our child entered the world that we’re not covered in typical childbirth classes. In surreal fascination, I watched as the doctor and my husband settled in to watch the Olympic Track and field trials between contractions as I lay on my back, feet mounted in stirrups at the end of my bed.

And then it was time to begin pushing and with a little help from a vacuum device, the doctor announced that we had a son as Bradley Cole Boxx slid silently into the world at 4:11 in the afternoon, June 21, 1992.

Mary quickly cleaned him up, placed a stocking cap on his head, tagged his body and wrapped him in a warm blanket before handing him to me. I cautiously unwrapped Cole to count fingers and toes as I held my breath remembering the words of preparation the doctor had spoken prior to delivery. In the relative quiet of the delivery room, I looked up at David and asked him if he wanted to hold his son. And on my husband’s first ever Father’s Day, I swallowed thickly when he declined.

Following the normal post-delivery care, the doctor quietly talked David and i through the reasons why we may or may not wish to have an autopsy performed. Since the cause of death was evident (the umbilical cord wrapped around one arm and multiple times around his small throat) we found no reason to authorize a search for any other cause of death. And then my room was cleared of sympathetic medical personnel and David and I were left to spend as much time as we liked with our all too silent son.

imprint3David’s first Father’s Day began in the dark of night. He later told me as he drove home from the hospital the night before Cole was born that he realized he now shared the loss of a son with his Heavenly Father.

His first official act of fatherhood was to disassemble the crib he had assembled earlier with such anticipation and joy. This he did after that solitary drive home alone the night before, in the early hours of Father’s Day.

David never held his son. All these years later, he doesn’t recall why he made that choice. Truthfully, he may not have known himself what motivated him to make that decision. I have to wonder if it was a simple form of denial. The horror, the devastating loss, was somehow less real or less personal if he didn’t reach out and touch the flesh of his flesh. Not holding his son is the one regret of David’s initial foray into fatherhood.

But David did what had to be done and he did it independently — it’s what he needed for himself. The day after I came home from the hospital he left to plan Cole’s funeral. I had no idea he’d even made the appointment. He just went and did what needed to be done — because he was a father and it was one of the final acts of service he could perform for the child he loved.

In the intervening years, David embraced fatherhood three more times. Bethany, Gracen, and Katie completed our family. Sadly, two and a half years ago our oldest and youngest daughters were killed by a careless driver.

Father’s Day is a bittersweet day — those most memorable are the ones that were more painful than pleasant. The day is one in which David is ever aware of the absence of the children he’s lost and profoundly grateful that Gracen remains. He acknowledges his sorrow but refuses to dwell on it.

Sunny the grill masterFor David, Father’s Day has never about being appreciated by his wife and children. Instead, Father’s Day is all about David’s appreciation for his Dad. For the example of love demonstrated through acts of service more than words. For learning about humor, character and integrity, hard work, and protecting those you love. For David, Father’s Day is about honoring the effort and commitment of the generation before, not reveling davidwithfrostyhatin his own fatherhood. And David’s father has loved our family with words and hugs, and meeting needs through the work of His hands that have touched me in ways I can’t begin to describe. He is not so much my father-in-law as he is the father of my heart.

Since becoming a father himself, David has never experienced a Father’s Day untouched by sorrow. But every single Father’s Day since the day his only son came into the world has been marked not only by memories of that first unconventional holiday but also with an uncommon depth of appreciation for the man who raised him.

 
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Posted by on June 19, 2016 in Grief

 

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Reader Stories on Stillbirth

The_New_York_Times
The New York Times printed a story about Stillbirth on Father’s Day this year. I saw the article on Facebook and responded, as did a great number of others, when they asked what advice you’d give to a family devastated by stillbirth. The Times published a compilation of reader responses on July 28th. This is a link (in red below) to that publication. Reading it may equip you to support and encourage someone you love one day.

http://www.nytimes.com/interactive/2015/health/stillbirth-reader-stories.html?_r=0

 
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Posted by on October 22, 2015 in Grief, Links

 

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A Letter to the Friend of a ‘New Normal’ Grieving Mother

griefrevealsyou
JULY 1, 2015 BY NATHALIE HIMMELRICH
http://stillstandingmag.com/2015/07/letter-friend-grieving-mother/

This article (Click on link in red above) is well worth the read for those who wish to understand the heart and mind of a grieving mother. It is definitely a struggle to merge the pre-loss woman I was with the post-loss woman I am and will always be, in spite of the fact that I’ve been down this road before.

I could have written most of this article myself. The one unmentioned battle is that of your faith and your reality. I fear my last post offended some of my Christian friends – the “choose joy” comment and “it’s ok, God’s in control” reference in particular.

I want people to understand there is a difference between joy and happiness and that the Bible tells me there is a season for everything, even grief. I’m not choosing to be unhappy, I am, however, grieving and that process may take longer than even I would like it to. And I too fully believe that God is in control but during this time of grieving it’s not particularly comforting because He was and always has been in control even when my son died within my womb and my daughters died at the side of the road and when two of my children were diagnosed with a progressive neuromuscular disease. None of those things have been or will ever be OK with me in this present world even if they are OK from an eternal perspective.

I am by far my own worst critic expecting some supernatural ability to cope with my changing reality as the perfect Christian would but I am also far more human than holy so forgive me if in my grief I have disappointed or hurt anyone as I struggle my way through all of this.

At this point in time I relate far better to Job’s lamenting his very birth than I do to the proverbs 31 woman who has no fear of the future and while I make recognize that I can count it all joy during this struggle because of the rewards that will later spring forth, I’m too tired to make the effort right now.

(Facebook Post 7/1/15)

 

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