Author Archives: Janet Boxx
Everyone Has a Different Normal
For TEAM Teen Gracen Boxx, “Everyone has a different normal”
Date: Saturday, April 25, 2015 at 6:03PM
When Gracen Boxx was 16 years old, her parents sat down with her for a serious talk. With a spirit of openness, she accepted the news her parents shared with seeming ease. They told her that she had been diagnosed with a degenerative genetic condition called Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS). Among other things, this meant that she would one day need a wheelchair and that her speech challenges would intensify. Learning of her diagnosis simply confirmed what Gracen already knew in her heart. Her physical challenges would not get any easier.
Gracen understands what it means to have a degenerative condition because she has courageously lived it throughout her entire childhood. Gracen’s mom, Janet Boxx, shares, “I imagine most kids with progressive diseases struggle to accept the way their bodies disappoint them and Gracen was and is no different.” In Gracen’s words, “Having a skill and then losing it is like losing a part of yourself.” The idea of losing independence because of diminished skills is a very distant horizon that most young people cannot fathom. For Gracen, this distant horizon has become an ever-present landscape in her daily life. Gracen’s vulnerability in this landscape became even clearer when Gracen and her family were in a tragic car accident in December 2013. Gracen sustained physical injuries, but far more devastating was the loss of her two sisters in the accident.
Even though Gracen knew that her ability to walk would diminish because of ARSACS, she never anticipated that a car accident would require her to use a wheelchair while still in high school. This reality intensified her commitment to working hard in therapy. Gracen’s immense compassion and understanding of the obstacles some children face make her visits to Children’s Therapy TEAM a highlight of her week. She feels a strong connection with children confronting significant daily challenges. For Gracen, “Everyone has a different normal.” Time has not dulled the ache of missing her sisters, but such feelings have become more normal. Her challenges with ARSACS have become normal. Even her experiences with the pain of frequent migraines have become normal. She carries on. Therapy has enabled Gracen “to maintain what I have for as long as possible.” With so much beyond her control, Gracen’s ability to choose to work hard provides hope, even when life’s challenges seem unsurmountable.
Dread & Anticipation
(Originally posted on Facebook 10/11/14)
The next three months are filled with the dreaded firsts that the bereaved anticipate with trepidation – birthdays, holidays, and the anniversary of the death itself. Having previous experience grieving the loss of a child, I have found that for me personally, the anticipation of the holiday or anniversary, is often worse than the day itself. Even so, while that means the holiday or anniversary is bearable, the days leading up to them are generally characterized by an undercurrent of sadness. It’s a time where emotions normally tamped down bubble to the surface far more easily resulting in anxiety, primarily regarding the ability to keep my emotions in check in public settings. Therefore, the most notable manifestation of my anxiety will likely be a silent withdrawal from unnecessary activities.
Such an absence does not signal the inability to cope with grief in a healthy manner, but rather a desire for both privacy and an awareness that a display of emotions often makes others very uncomfortable.
In addition to the normal grief triggers the upcoming months hold, on the 23rd of this month, just four days after what would have been Katie’s 17th birthday, the first of the criminal legal proceedings begin. The McDonald County Prosecuting Attorney has convened a Coroner’s Inquest. Inquests are rare legal proceedings. A jury of six is selected and witnesses are called to testify.
The purpose of an Inquest is to determine cause of death when death occurs under suspicious circumstances or by violence. The jury decides if the death was natural, accidental, suicide or murder and if “culpable conduct” contributed to the death. Proving a “culpable mental state” is required in order to gain a conviction for involuntary manslaughter. The jury’s decision as a result of the Inquest will determine if the Prosecutor will file misdemeanor or felony charges against the driver responsible for the accident.
The attorney who is handling the civil litigation (our personal attorney), has told us he expects misdemeanor charges will ultimately be filed and that we can realistically expect the court case to be completely resolved before the end of the year.
So, the next three months will likely be emotional and somewhat stressful. While I know God has a purpose and a plan, that He will see us through every birthday, holiday, the anniversary of the girl’s deaths and the prosecution and sentencing of those responsible, I am also painfully aware that my thoughts are not His thoughts and that His ways are not my ways.
God’s goals are in many ways far more simplistic than mine. His highest priorities involve reaching and redeeming the lost, and conforming the saved into the image of Christ, which sometimes involves time spent on the Potter’s wheel and/or in the Refiner’s fire.
I, on the other hand, AM NOT HOLY! While I too am interested in the salvation of the lost and being conformed into the image of Christ, those goals, if I’m completely honest, are not always, and maybe not even frequently, at the top of my priority list. I am distracted by worldly things, worldly hopes and dreams and sometimes I rebel against or even resent the means God uses to achieve His goals (I’ve heard that still small voice whisper, “Janet, why do you kick against the pricks?”), and sometimes I simply acknowledge His plans with little more than weary, disappointed, resignation; which I guess most accurately expresses how I have viewed the circumstances I have found myself thrust into over the last nine months.
In spite of how I personally feel about God’s most recent intrusion into my . . . Uh, I mean, in spite of how I personally feel about the means God has chosen to achieve His goals (which I believe extend beyond my immediate family), I am completely confident that the Holy Spirit is actively performing a spiritual work within me that God highly values. And one day I will value it too.
Almost Home – Almost Safe
(originially posted to Facebook 4/5/14)
It’s been a busy week. So many blessings – a good report from the surgeon, no more leg brace, seeing Gracen up and on her feet again relearning to walk, a healing pressure sore, pancakes and hugs from Pineville Fire & Rescue, & friends reaching out. It’s all so bittersweet.
Today we chose to drive by that stretch of highway. We’ve been by it before, but always in the dark and never really sure exactly where the collision took place – trauma tends to be a little disorienting.
I remember thinking the day of the wreck, “We were almost home”, and that was my thought today as well. “Almost home” really means “almost safe”. But there really is no “almost safe”. You are either safe, or you’re not.
So today I offer thanks to Rosemary for the reminder she posted on the blog my sister-in-law, Sandy Boxx Tompkins, set up in response to “A Mother’s Musings”. She said, “Your children are a greater part of your future than they were of your past…” I so needed to hear that.
Jealous
The pre-song interview pretty much says it all; and aside from the line in the chorus that says, “But I always thought you’d come back, tell me all you found was Heartbreak and misery”, well the rest of the lyrics speak a very uncomfortable truth. I miss my children and I am desperately jealous to know they are happy without me. Not that I’d want them to be unhappy – and certainly not that I’d want heaven to be anything less than all I hope it will be, but I find myself jealous that heaven has their sunshine and I do not.
On this, the day after my youngest daughter’s birthday, this song seems especially appropriate as the following (partial) lyrics testify:
I wished you the best of
All this world could give
And I told you when you left me
There’s nothing to forgive
As I sink in the sand
Watch you slip through my hands
Oh, as I die here another day
Cause all I do is cry behind this smile
It’s hard for me to say,
I’m jealous of the way
You’re happy without me
It’s hard for me to say,
I’m jealous of the way
You’re happy without me
Katie Eve 2015
(Posted on Facebook 10/18/15)
It’s ten p.m. Katie Eve. Soon, far sooner than I’d like, be it eleven or three a.m., I’ll close my eyes only to wake and find it’s Katie’s birthday and she’s not here – will never be here again. There are no carefully selected gifts, no friends coming, no cake, candles or ice cream. Just the ever present void her enthusiasm and contagious smile left behind.
Eighteen, she should be turning eighteen tomorrow., October 19th. And just that easily her life is erased. Oh, not in our hearts and minds, but I can guarantee you that the majority of people (friends and family – who can keep track of all those dates?) have no idea tomorrow is Katie’s birthday and will only be made aware by Facebook notification.
Before her death, celebrating her birthday was primarily a family affair. It didn’t matter to me if anyone else was aware of, or celebrated her birthday. But that has changed as well, because the fact that no one outside our family misses her screams that her life on earth had no worth. Lack of recognition, lack of appreciation, lack of awareness equates to lack of value – and that is one thing this broken mother simply can’t swallow. My throat tightens and chest heaves as I attempt to contain the sobs as tears roll down my face before I wipe them away. My heart is choking on the sorrow.
I didn’t fully comprehend how much life is defined by relationships. We are so distracted by jobs, and things and responsibilities that even the most valuable of relationships compete for our attention. In a world where the squeaky wheel gets greased, there is always a squeaky wheel demanding attention. In fact, David just stopped at the foot of my bed where I was reclining as I keyed this and said, “Will you cut my hair?”
“Sure”, I respond.
Minutes later from the kitchen I hear, “OK, I’m ready.”
And I’m off, grease can in hand.
Birthdays – An Emotional Minefield!
(Originially posted on Facebook 10/4/14)
Birthday cupcakes
I wrote this blog in October of 2014, just prior to the first time we would observe Katie and Bethany’s birthdays without them. Today, October 19, is Katie’s 19th birthday, the third since her death at age 16. I have yet to find a satisfactory way to celebrate the girls’ birthdays in their absence. We’ve left town, bought substitucinary gifts, and simply bought flowers for their graves and balloons to tie to the crosses at the side of the road where they were killed. But no matter what I’ve tried, I just can’t enjoy the day of their births without them. No prettily wrapped presents, no specially requested cake or pie, no candles or off-key singing will mark this day. Memories are bittersweet. But birthdays are empty and hollow, and the absence of their presence is a living and breathing entity in this oh, so quiet house. And so I look back . . .
One of the things that was unique about the David Boxx branch of the Boxx family tree is that our family didn’t have birthdays spread out over the entire twelve month calendar. We had, what I refer to as a “Birthday Season”, since our birthdays all fell one month after the other for five consecutive months. (Well, that’s to say, every member of our immediate family who was born breathing). **See footnote for additional information.
The Birthday Season officially kicked off in August in which my birthday is celebrated, followed by David’s in September, Katie’s in October, and just two weeks later, Bethany’s arrived just squeaking into the month of November, after which Gracen’s was celebrated one week shy of Christmas.
Katie absolutely loved birthdays. One year she set about creating hand made birthday cards for every family member. Inside each card she included a poem she had written about the month of their birth.
From an early age, only a few months after celebrating her birthday, Katie would begin asking how long until her next birthday. As time crept closer to her birthday, she would become increasingly excited. She’d begin making her birthday wish list early and would add to it throughout the month. I recently came across last year’s list written by her own hand – a true “gut check” moment. One year, the day before her birthday (and because I simply loved her excitement and anticipation over it), I told her, “Katie, do you know what today is? It’s Katie Eve!” She loved it!
When Katie was a student at Washington Junior High, she became well known by the ladies who worked in the school office. Every day she passed through the office in order to visit the school nurse and take her daily medication over the lunch hour. The ladies in the office picked up on Katie’s excitement over her birthday and surprised her with a card – and out came that bright, brilliant smile for which she was so well known. It was pure sunshine!
These days, as Katie and Bethany’s birthdays draw close, I’ve been thinking about the best way to commemorate their individual birthdays. The decision is complicated because how it is handled must take into consideration each member of the family, what each of us individually needs, realizing that what helps one may be painful for another.
Is a balloon release emotionally helpful or hurtful for David, for Gracen, for me? Is it a comfort to eat cake and acknowledge the day, or is it less painful to avoid it altogether – to pretend it’s just another day like any other? Does avoidance more profoundly underscore their absence? This is something with which I continue to struggle.
So far I’ve made only one decision; a decision to do for another child what I can no longer do for two of my own. Children’s Therapy T.E.A.M., the clinic where Gracen has received such over-the-top care, has a deep concern for children with special needs that extends far beyond the borders of northwest Arkansas. TEAMworks is CTT’s non-profit outreach – follow the link to learn more: http://teamworksteam.org/about/who_we_are.
In preparation for an upcoming trip to Guatemala, a bulletin board in the Bentonville clinic was covered with pictures of disabled Guatemalan children, TEAMworks version of the popular Christmas Angel Tree program.
The day the bulletin board caught my attention, only two of the remaining pictures were of young girls. On the back side of each picture was a name and picture of a toy specifically selected with that child in mind. Immediately, I realized that while this year I am incapable of selecting and gifting Bethany and Katie with birthday presents designed to bring them pleasure and reinforce that they are loved, I can do that for another child who might otherwise never receive a gift personally selected with them in mind. I believe Bethany and Katie would approve.
**Celebrating Cole’s birthday, was largely a solitary endeavor observed by me alone. Not to say that David ignored the observance of his son’s birth, he is just less inclined to talk about the deep wounds of his heart and let’s face it, to die on your day of birth does have a tendency to put a damper on any kind of celebration. The girls were of course aware of their older brother, but since he was our firstborn, his life was a bit obscure from their perspective I suppose, and after our move to Bentonville, it was too far to travel to decorate his grave, which all three girls did with me prior to that point in time.
Flashback – Anniversary of the Funeral
(Originally Published on Facebook 1/4/15)
A year ago today Bethany and Katie were laid to rest. January 4, 2014, runs through my mind in bits and pieces like a slideshow of still photos – moments captured in my mind – interspersed with video-like footage – blurred images alongside others in sharp focus.
Memories of personal encounters during the visitation – my college roommate’s husband standing before me unashamed as tears fell from his eyes – impossibly young friends, teachers and school nurses extending sympathy – friends who had driven several hours, many of whom hadn’t seen us in almost ten years – a man who only identified himself as “a friend”. Bethany’s broken-hearted boyfriend and his equally broken-hearted mother standing alongside her sister and the soft pink tulips (Bethany’s favorite flower) we cherished.
Pastor Wes and Lisa meeting with us just prior to the start of the service. The comfort and blessing provided by the presence and participation of Bill Boren, our Pastor from Kansas City and long-time friend, who had performed our son’s funeral twenty plus years before. The music and message.
The sight of those two flower draped caskets standing in the cold air at staggered heights one in front of the other, the cemetery chapel providing a fitting backdrop at the graveside service. How I wish I’d taken a picture of that starkly beautiful, sobering and painful view.
The luncheon that followed – and the hospitality the church ladies extended in inviting and making welcome the numerous international students Bethany had befriended at UCA.
The discovery of the stroke my oldest brother suffered leaving him hospitalized at Northwest Regional.
The dark drive back to Little Rock with my crazy brother who was insanely willing to spend three hours on the road with us all because he wanted thirty minutes with Gracen before taking upon himself the responsibility of driving Bethany’s car another three hours back to Bentonville, in what had become inclement weather, before driving on to Tulsa planning to catch a flight home that same night.
Today was a day of bittersweet flashbacks of well remembered, sharply-edged pain, gently buffed smooth and soft by hugs of comfort and sorrow shared between friends and family. Yes, a year ago today Bethany and Katie were laid to rest and tonight Gracen will drift off to sleep in her over-sized Pineville Fire and Rescue t-shirt.
Painful Words of Truth & Encouragement
This was read at our son Cole’s funeral by Bill Boren in 1991 and again yesterday (1/4/14) at Bethany and Katie’s service. It’s meant a lot to me over the years and I’ve shared it with many grieving friends.
He Maketh No MistakeP
My Father’s way may twist and turn
My heart may throb and ache,
But in my soul I’m glad to know,
He maketh no mistake.
My cherished plans may go astray,
My hopes may fade away,
But still I’ll trust my Lord to lead,
For He doth know the way.
Tho’ night be dark and it may seem
That day will never break,
I’ll pin my faith, my all, in Him,
He maketh no mistake.
There’s so much now I cannot see,
My eyesight’s far too dim,
But come what may,
I’ll simply trust and leave it all to Him.
For by and by the mist will lift,
And plain it all He’ll make,
Through all the way, tho’ dark to me,
He made not one mistake.
– A.M. Overton, 1932
Steel Magnolias: MaLynne’s Outburst
Thank God, and I don’t say that flippantly; Thank God for the women who can help you laugh in the darkest of circumstances.
Can I get a witness?
Boxx Banter 