John Piper got this exactly right and although it was written especially to address a mother grieving the loss of a stillborn child, he addresses issues true for anyone who grieves the loss of a loved one. Blessed are those who mourn, for they will be comforted.
http://www.desiringgod.org/articles/letter-to-a-parent-grieving-the-loss-of-a-child
(Facebook Post 9/8/15)
(Facebook Post 8/15/15)
The start of college is an exciting time for Gracen, and a bittersweet time for me. A time for her to spread her wings and fly. I am profoundly thankful she has this opportunity at all as we were not quite sure it would be possible, at least in the way we hoped it would happen.
Earlier this year I read through the doctors notes from the ER December 26, 2013. When every effort had been made on her behalf, a final prognosis note was entered into record. It read something like this: Should the patient survive, she will likely reside in a long term care facility. When David and I were finally allowed to see her in the ICU, I asked the nurse outright if Gracen was expected to survive and received the standard non-response: All I can tell you is that the next forty-eight hours are critical.
It never crossed my mind to take pictures of Gracen in the hospital, in fact the only ones taken were taken by a friend of Gracen’s. But looking back, I wish I had, if only to remind myself of how far she’s come, how far she exceeded the expectations of the doctors who saved her life. There are days I need the encouragement – a visual reminder – that my warrior princess has conquered overwhelming odds in the past and can still push beyond the prognosis of her disease.
I’ve done everything I can possibly think to do to ensure a smooth transition for Gracen into college. We’ve toured the campus multiple times trying to address every accessibility issue she might encounter in the dorm, the classrooms, and on campus itself, from the cafeteria, library and laundry facilities to ADA (Americans with Disabilities Act) desks and priority seating arrangements. I’ve spoken with the Support Services Director and the Facilities Director, who, by the way, have treated this neurotic mother with great kindness and the utmost respect, and have addressed every concern promptly.
I have scoured the ads and stores to determine if there are products available for purchase that will make dorm life easier, more “normal” for her, and purchased what I can. Her dorm room has been measured and mapped out on graph paper so that we can determine how her room can be laid out for maneuverability and access to outlets to charge the battery for either her scooter or the power wheelchair we hope will be delivered before freshman orientation begins. We’ve assessed bathrooms and showers and storage space for her manual wheelchair, a walker, and shower chair. We located and spoken with the campus nurse and are working with Gracen’s therapy clinic to arrange a new, abbreviated schedule of therapy sessions.
Arkansas Rehabilitation Services helped us to identify and acquire assistive technology to help Gracen in the classroom and we have been practicing to use Dragon Dictate and a Smart Pen.
Most important of all, for this neurotic mother anyway, is the iwatch Gracen received as a graduation present. It’s a luxury item to most, a high-priced toy to others (and definitely a toy from Gracen’s perspective) but it’s sole purpose is to grant Gracen access to emergency assistance should she fall in the shower or anywhere else on campus when she is alone. As long as her cell phone is nearby, she will be able to call 911, campus security, the school nurse or a friend for help.
On Thursday, August 20th, we will move Gracen’s things into her dorm room and on Friday evening we will return and Walker Residence Hall on the campus of John Brown University will become Gracen’s new home. David and I will probably take a boatload of pictures, which she will allow with annoyed indulgence, hug her, and do our best not to shed any tears in her presence before turning our backs and driving away. We will be happy and sad and far more worried than the average parent as we exit campus. And while David may trust the Lord to protect Gracen by keeping her physically safe, I will trust Him to protect her heart, mind and soul until her numbered days expire, and I will hope and pray that her number of days will be far greater than Bethany’s and Katie’s proved to be because as Proverbs 19:21 says, “Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.”
My heart will hope that Gracen will fly and I will share the wisdom of others who have gone before and tell her to stay strong –
that she is not a one in a million kind of girl, she is a once in a lifetime kind of woman.
I will tell her life shrinks in proportion to one’s courage –
And to keep on climbing, keep on reaching. I’ll remind her that she’s come so far, that she need not be scared, because I am confident that she will fly! I’ll tell her to exercise discretion, use good judgment and then, and only then, take risks.
And I will try to remind myself of those same things in the days and weeks to come as Gracen flies and I start looking for an identity beyond that of wife and mother and attempt to answer this question for myself, Who am I now?
(Posted on Facebook 2/26/15)
I have found there are points in my life where I find myself completely unable to accept God’s obvious plan. Maybe you’ve found yourself in a similar situation? It’s what I refer to as my “Road to Damascus” experience. By that point in time I’m filled with frustration and anxiety and doing everything I can in my own power to change the circumstances I find myself in only to have God pull me up short and shine a painful, blindingly bright light of truth down, revealing that I am not just kicking against the pricks but actively working against His greater plan.
It’s hard to describe how it feels to know that the thing you least want to accept in your life is an irrefutable part of God’s plan. Oh, to be a two year old again so that the temper tantrum I want more than anything to throw, while not tolerated, is at least understood.
Harder still and completely beyond my human capabilities, is the ability to change the desperate desire of my heart, let alone make any attempt to surrender and embrace God’s unacceptable plan.
I firmly believe changing the heart and embracing God’s plan only happens at the point where a believer’s brokenness is met by the active work of the Holy Spirit in that believer’s life. Surrender definitely comes before embracing the plan.
In fact, embracing the plan may never actually happen and it may not even be something God expects from me — from any believer. Maybe all God really expects is for us to quit actively working against Him — not because we have the power to prevent His plan from unfolding but because the fight — the anger, fear, frustration, anxiety and bitterness exhausts and destroys us from within.
Maybe simple resignation, surrender to the inevitable, is a victory in and of itself. Maybe surrender, resigned or not, allows one the energy to take the next step, endure the next blow, and the next, until only the sorrow and quiet emptiness remains leaving room for the Savior to fill you from the cup of consolation and enabling the broken believer to receive the only remaining hope worth clinging to — an eternal future promised to stand in stark contrast to every aching moment the present reality reflects. Maybe that’s sufficient until the day we are made like Him.
(Originally published on Facebook 11/17/14)
Please take a moment and read this blog post from themighty.com, entitled, “A Letter to the Me Who Was Terrified of Our Diagnosis”, before reading any further.
http://themighty.com/2014/11/a-letter-to-the-me-who-was-terrified-of-our-diagnosis/
Oh yeah! I wish I had read this in the early years, when I knew something was wrong but most people (medical professionals included) thought I was simply a paranoid, over-protective mother.
I never could have written this to myself. The many comments that minimized Gracen and Katie’s symptoms from real concerns to simple clumsiness left me second guessing myself. Having lost one child, I was hyper-sensitive to every fear, but also hyper-sensitive to over-reaction. I knew I needed to guard against my over-protective nature, yet that left me consumed with self-doubt. I was not able to see clearly. I needed someone with a more distant perspective than I could manage to encourage me to aggressively pursue answers. It took me quite awhile to find that person.
In the meantime, I developed an advance/retreat strategy. Push, push, push for answers. Gain a bit of knowledge, a fraction of ground. Push for more information. Get shot down and become disheartened. Retreat. Bury my head in the sand. Shake off concerns – ignore fears, ignore fears ignore fears! Arggggg, can’t ignore fears anymore – push, push, push! Repeat!
That describes the early years. Every once in a while God would send a glimpse of encouragement. I remember taking Gracen to soccer practice one afternoon, frustrated that a doctor had once again downplayed my concerns, leaving me questioning. Wondering if I was seeing something that didn’t exist. I sat down next to another mother I didn’t really know as practice began. A few minutes after practice started she turned to me and said, “What’s wrong with your daughter?” And while I cringe at the insensitive way in which the question was phrased, at that moment I was thankful because she validated what I knew to be true deep down inside and gave me the courage to push some more.
There came a point in time when, due to the progressive nature of the girls’ disease, I no longer had to fight to have doctors acknowledge a problem existed. However, at this point I encountered an unexpected attitude from medical professionals. There is a school of thought within the medical community that promotes the idea that the root of the problem is irrelevant. Treating the symptoms is sufficient. Weary of the battle, worried about the future and afraid to look too closely into the future, I acquiesced.
Then one day, having to find yet another neurologist, I stumbled upon Dr. Phillps, a new pediatric neurologist (actually, I think she was the only “pediatric” neurologist) arrived in NW Arkansas. She was a tiny sprite of a thing with a warrior’s heart. After several appointments she turned to me one day and said, “I think we need to search for a diagnosis. You need to know if a condition leads to other medical issues so that we can watch for those and not be surprised by them.” So the hunt was on – and it took years.
Dr. Phillips eventually married another neurologist, and so Dr. Phillps became Dr. Mrs. Balmakund when her husband began working at the same clinic.
Dr. Mrs. Balmakund is the most humble and tenacious doctor I have ever met. She is always open to suggestions from others, medical or lay people. She loves her patients and their families and takes her knowledge and questions to monthly conference calls with a group of her peers and on the road to medical conferences where she questions other specialists, always seeking to find another patient presenting with similar symptoms or to find that one specialist who has knowledge of a condition she is unfamiliar with. She has no ego where kids are concerned. She willing sent us to other specialists and eventually one, who was unable to provide a diagnosis, did suggest two tests that might reveal a diagnosis. After jumping through a series of insurance hurdles, and fifteen years after Gracen’s symptoms presented, we finally had a diagnosis.
Yippee, right? Wrong! David and I found ourselves less than prepared to hear the prognosis revealed one Spring morning at her clinic. However, Dr. Balmakund did not abandon us but set us up with a neuro-psychologist to help us work through the emotions and fears and guide us in the best ways to inform all three of our daughters.
Dr. B, as she is affectionately known to many of her patients, has been there for us every step of the way – has gone above and beyond with hospital visits and follow up phone calls. She has been our ordained gift from God and we could not be more grateful.
In fact, God has been doubly good to us as Amy Grant used to sing. Dr. Mrs. Balmakund works in a practice of like-minded professionals who have supported and encouraged us in our most difficult and darkest moments. They have shared hard truths with love and have pushed us to seek outside help we likely would have made do without. We have needed them and have often not had to ask because they’ve simply stepped up and in before we knew exactly what we needed.
Drs. Karkos, Scott and Balmakund have often played the role this woman played for herself in my life – recognizing needs within me that I was not always aware of myself. They have ministered to our entire family, not just their patient. In that, they are truly remarkable and have blessed us beyond measure! They are among those I think of when I hear or think of Philippians 1:3, “I thank my God upon every remembrance of you.”
These women are but a small sampling of the men and women God has surrounded and supported us with. So very many people, some who’ve played a very limited role, appearing at just the right moment and some who’ve stood in the gap for us for a season, and many who have walked along side us for years – serving as the hands and feet of Christ – with a word of encouragement, extending a simple kindness, or doing the heavy lifting by praying us through so many concerns and challenges and downright dilemmas. Oh yes, I am grateful to God for His faithful provision.
Now, I think I should go back and read paragraph one!
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.
(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.
(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.
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
(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.
Boxx Banter 