Year in Review: A Time to Mourn

For everything there is a season,

and a time for every matter under heaven: a time to be born,

and a time to die; a time to plant, and a time to pluck up what is planted; 

 a time to kill, and a time to heal; a time to break down,

and a time to build up; a time to weep, and a time to laugh;

a time to mourn, and a time to dance

Ecclesiastes 3:1-4

I have not posted here for quite some time—in over a year to be exact. I have tried to hop on many times in that year and give you a quick update on my health; however, I have been bogged down with… well, a lot.

Just as Ecclesiastes teaches, there is a season for every purpose under heaven. Some years, from our perspective, are happier than others. They bring good news, prosperity, and big life events. Others—probably most—are a mix. Life is full of its ups and downs, and certainly, trials test our faith and produce steadfastness. Praise The Lord!

There are seasons, sometimes years, however, that shake us to the very core of our being. It seems that like Job every aspect of our existence is open to trial, to suffering, to heart ache and tribulation. And although there may be others in the world who face more pressing hardships or a fiercer persecution, what God has ordained for us—yes, even us 1^st world-ers, is a true test of faith.

I have been experiencing such a season—a year that I would categorize as a year of mourning. I have not blogged or updated because I just have not been in the mood to. In other words, I have been overwhelmed with life and the wrestle between the old and new natures that war within me. I have not been able to tell you how I am because I have not been sure of the answer myself.

I am coming out of 2015 better than I started and want to journal what I can remember. I want to put my experiences and thoughts in a place that mean something to me and share them with those who dare to read. It is lengthy. It is a year’s worth of updates, after all, so I have divided the events of the year into chapters. Read at your own pace or pick the parts that most interest you.

So, enough already with the preface. Here it is: A Year of Mourning

Chapter One: Mourning Dreams

2015 began with difficult news. For a long time, Michael and I knew one of our sons was “unique.”

No, wait.

That label never quite worked. When we would explain him as having “unique gifts” or as approaching life from a “unique perspective,” we would be the recipients of an eye roll:

Oh, yeah, he’s “unique” alright…uniquely in need of some discipline.

So we tried “special.”

But that was always shot down with a how-dare-you-go-there glare followed by, “Now, Dawn, all children are special.”

Well, yeah. They are.

But this one… he is something my husband and I, with our teaching degrees, understanding of child development and years of experience working with kids, didn’t always get. We couldn’t quite put a finger on what was making him so unique, special, um…different… does different work?!

I remember when this son was seven years old, a really good friend who really understood that my son is unique, special, different called me to tell me she had watched a TV special about a man with Asperger’s Syndrome. With pure intentions and genuine kindness, she told me she thought of my son as she watched the person who was featured. He talked like my son…moved like my son…seemed to be on the same wavelength as my son. Deep down, I knew she was right but for personal reasons, rooted in crippling doubt and fear, we put off testing. We hoped his sensory issues were just immaturity. We secretly worried his social deficits could be attributed to homeschooling (yeah… right… I know). And not being able to tie his shoes? Surely that could be blamed on Velcro!

However, his sensory issues worsened. Contrary to popular opinion, homeschoolers, including my son, do not live in a bubble, and we found ourselves parenting a teenager who could not use scissors or utensils properly… and not for a lack of instruction or trying. We began the evaluation process in 2014, and on January 2, 2015, he was officially diagnosed with High Functioning Autism (Asperger’s Syndrome).

For the next six months, my life… and his… became a whirlwind of therapies: home, OT, speech, and social therapy in conjunction with our public school system’s special set of hoops to jump. I had to serve as his mom, advocate, home therapist, regular classroom teacher and exceptional ed teacher. And I had to repeat the same story, the same specifics of his diagnosis and the same reasons for delaying diagnosis to what felt like 1000 different professionals. It was probably more like a dozen—but it felt like a 1000.

I took quite a beating, too.

Why did you wait so long?

Don’t you know therapy is more successful for younger patients?

By his age, he’s already developed habits and coping mechanisms.

*Sigh.

I had to explain 100 times over that he does have plenty of opportunities to “work on his social skills.” He takes a full course load at our co-op where he is taught by experienced teachers and interacts with a BUNCH of young people. He is active in our home church and attends some youth group functions at another Bible-believing church in our community. He goes to dances and parties and social events. He practically lives at the karate studio and has a second family there. And, even though he is so socially awkward, he actually has FRIENDS and does stuff with them. If this young man gets any more “socialized,” his lupie mother is going to fall over dead from taxi-mom exhaustion.

And thankfully, his diagnosis wasn’t “too late.” He has worked incredibly hard and has made some incredible gains in his social skills and thinking. He still can’t tie his shoes and was teased relentlessly about the Velcro ones. Now, our whole family wears HICKIES in solidarity with our Aspie. All of our shoes are slip-ons, and if you make fun of him, you have to make fun of us, too!

As hard as this time was for me, he had it worse. He is old enough to understand his diagnosis and to formulate ideas about how it could impact his life. Realistically, some dreams have had to die—both his and mine. We’ve cried. We’ve been tired and frustrated and even a bit angry at times. When I think about how brilliant he is and the potential he has for academic and professional success but how likely he is to live alone, to struggle to find friends, to marry, to navigate a culture that idolizes charm, charism and good looks, I get so mad that I could hit something—or someone. If you’ve seen Steel Magnolias and you remember the scene in which Sally Field’s character rants and vents her anger to her group of friends after the funeral of her daughter, Shelby, then you have a proper visual image of my pain and grief.

Just like M’Lynn at the pinnacle of her grief, I have just wanted to hit someone…hit them over and over again until they hurt as much as I do.

Where’s Ouizer when you need her?!

And then I remember that God is sovereign. That he fearfully and wonderfully made my special, unique, different son. That He holds the plans for my son’s future and will give him the grace for all that He has planned for that magnificently wonderful, special, unique, AMAZING person. Some dreams are dead, but some new ones are being born and by God’s grace, we will march on, seeking His will and His purpose for our Aspie.

Chapter Two: Mourning Success

Close to the same time we received my son’s diagnosis, I received a few phone calls. They were from clients—clients who were more than that. Friends. Close ones. Ones who had found a place so deep within my heart that I’m not sure anyone could love them any more than I do. They were calling to let me know they had decided to take their son’s/daughter’s education in a different direction and that they would not retain my service as a tutor for the following school year. They had no real reason for “firing” me—no substantial complaints to share. Simply put, something new had come to town, and that’s “where God wanted them.”

That’s all fine and dandy. I want my friends to be where God wants them. I want them to be happy and to follow their conscience and to do what they think is best for their families. But the reality for me was that I was going to have to rebuild my business—one that I had poured blood, sweat and tears into—one that I had been willing to leave behind two years previously for that “new thing in town” but had been told by some of the ones now leaving my program for it that they would hate for me to sign on as a tutor with the “new thing”—that they would miss my classes and my approach.

It was hard.

I had to do battle with anger and bitterness and fear.

I had built my business to the point that the loss of clients would hurt financially, too… and we were facing new bills with all the autism therapy!

So, there I was, in the midst of a bunch of “it’s not you, it’s me” break up calls feeling asked by God to take the success I had grown to love and place it on the altar. That may seem melodramatic, and maybe it is, but there is a history behind my emotion. When I was seeking The Lord in prayer and through counseling during my college years as to what to choose as my major, I felt led to major in education and to make my “career goal” homeschooling. I had worked not just for the previous 2 or 3 years to build my business but had really worked since I was 19 years old to hone my skills and prepare myself to serve my fellow Christian homeschooler. I felt like years of prayer and work had finally taken root and the fruit I had prayed for was popping up abundantly.

But was it not really of The Lord?

Was it of me? My hopes? My dreams…again? My sad, sorry idolatry?

Like Abraham with Isaac, I put my business on the altar, raised the knife up, and took aim. I was ready to let it die.

But God, through his grace and his kindness and his mercy, did not let my business die. He provided. Some clients remained on board and a couple even worked hard to help me rebuild. He sent new students. Not only did He not let my business die but He doubled my number of students.

Soli Deo Gloria!

Chapter Three: Mourning Plans

In April, I took one of my sons, the same one who had just been diagnosed with Autism, to the optometrist for his annual eye exam. He had a major shift in his vision, and his optometrist, a trusted doctor of ours for over a decade, suggested it could be linked to Type 1 Diabetes. With me being an auto-immune mom, you better believe I took him to the doctor for a workup… pronto.

I explained to our PCP what had happened at the optometrist, and she decided a thorough exam would be in order. Her greatest concern was not diabetes, though, but a rare genetic disorder called Marfan Syndrome.  If you are unfamiliar with this disease, as I was (you should have seen how fast I pulled out my phone and started googling), this is the condition that kept Baylor Bear and potential 1^st round NBA draftee, Isaiah Austin, from continuing to play professionally.

I’m not a doctor nor do I play one on TV, so here’s my lame layman’s terms explanation:

Marfan Syndrome is a genetic disorder in which a mutated gene causes the production of fibrilin-1 to malfunction. This affects the strength and elasticity (causing over-elasticity) in connective tissues, which are found throughout the entire body. It can cause many symptoms, including a flat face, sunken eyes, stretch marks, elongated limbs, and extreme height. The most serious issue associated with Marfan is dilation of the aorta. In other words, it can be fatal.

For about the next 6 weeks after I heard the word “Marfan” for the 1^st time, which also just happened to be the final 6 weeks of the school and tutoring year as well as the height of registration for the up-coming tutoring year (i.e. working my hiney off to save my business) and also the busy season of therapies and IEP meetings for my Asperger’s son, we had to work in almost daily visits to a variety of specialists and/or the PCP or the hospital. Various parts of his body had to be checked by various specialists who had to send said reports to the PCP who had to interpret and meet with us several times—all while ruling out diabetes and other concerns not related to Marfan.

Also part of the process was an echocardiogram. As soon as we knew his aorta could be dilated, we had to pull him from most activities, including karate—oh the pain!-- and most of his OT—potential setbacks to progress being made in the autism arena, and he had to live a bubble-wrapped life. We waited in agony for nearly a week for the echo results and then… they were inconclusive.

INCONCLUSIVE!

Do not! I repeat, DO NOT do that to a mother!

*sigh

After this result, a friend mentioned my son’s condition in Sunday School as a prayer request, and a member of the class, a concerned pediatrician told my friend to tell me to call her office the next day.

I did.

She worked us in that morning.

She got to work and had an appointment set up at Sibley Heart Center at Children’s Hospital in Atlanta within a few days. They have a subspecialty clinic just for Marfan Syndrome and are fully equipped, staffed and experienced to examine and diagnose with very little waiting for results.

After 6 full weeks of agony, I took my son to Sibley where he was put through a full battery of tests, including a CONCLUSIVE echo. His aorta is healthy! Praise the Lord!

Concerning Marfan, though, we are optimistic that he does not have the syndrome, but instead has some “marfoid traits.” We have to wait until he is 18 (2 years from now) to return to Sibley for re-examination. Currently, he meets 5 of the markers for Marfan, making him borderline. If as he grows, he develops any more traits, we will need to do genetic testing.

So, he is ok… at least for now. What is there to mourn?

Plenty.

As mentioned previously, he is a smart cookie and was on track to graduate a year early. We have had to pull the plug on early graduation because we cannot send him off to college just before his 18^th birthday, just to have him return to Atlanta for Marfan testing and then possibly find out he has this terrible condition which will mean regular visits to a team of doctors as well as a lot of medications.

Anyone want to send their college freshman with Autism out in the world to adjust to all of that alone? Yeah, we don’t either.

So, another dream bites the dust. But that is ok. Especially when considered with the perspective of what we could be facing. When you think your child might die, you just suddenly care less about college, scholarships, the American dream… All you want is for your child, your baby, your heart to be ok.

For now, he is ok, and I am thankful.

Chapter Four: Mourning Progress (The Lupus Part)

So in the midst of all these stressful situations, I still had to manage my lupus.

Yes, Lupus. It is always there. It never goes away. Every Friday night my world has to stop so I can self-inject a dose of a high-risk medicine—one used in chemotherapy—to keep my over-active immune system from going completely haywire and causing inflammation in a vital organ. Of greatest concern are my kidneys. They have shown signs previously of possible damage, and my rheumy monitors me like a hawk.

In March, before the madness (and I’m not talking basketball) began, my bloodwork was exceptional! The best it has been since my diagnosis. My inflammation levels were extremely low. My auto-antibodies were under control. My kidney and liver function were perfect. My blood pressure, blood sugar and all other levels were exactly where they should be. We even announced to our closest friends that there was a chance I could be weaned off the MTX (chemo drug) soon.

My next bloodwork was taken in June—right after all the autism, business and Marfan stress—and the results were.not.good. My inflammation levels had skyrocketed, and there was a substantial amount of protein in my urine (Eww, gross, sorry).

So here comes my melodramatic side again…

My rheumy put me on red alert! He doubled my MTX dose which meant the side effects that were starting to become manageable (sorta, kinda) became almost unbearable again. He also wanted to see me again in 8 weeks as opposed to my typical quarterly exam. If my next lab showed similar or worse results…off to the nephrologist for me. I think he said something about a biopsy too but by that point my listening comprehension was that of a 3-year-old’s.

*(Peanuts teacher voice) wah-wah-wah-wah-wah

I felt certain the horrible test results were due to the horrible stress I had just experienced. I really thought I was going to lose my mind in April and May waiting for the Marfan results. I had to skip a lot of doses of medicine and ignore many of my self-care routines to make it to all those appointments and to do everything I had to do for both the Marfan situation and for the on-going autism therapy. Stress is horrible for auto-immune conditions, too. With this news and Marfan/Autism issues resolving, I committed to the increased dosage and put myself back on stringent self-care.

The good news: All is well again. My inflammation levels are much lower. There were trace amounts of protein in my urine but my kidney and liver function were both excellent. I’m continuing on the increased dose, but for now, it seems that my immune system is content to attack my skin, nerves and joints… not fun, but also not life-threatening.

*deep sigh of relief

Chapter Five: Mourning Perception

This is perhaps the most difficult story of all, but I can only tell it cryptically and in a muffled voice. It is my story but it is also someone else’s, and that someone else is in denial. It is a pervasive pain that jabs at my soul and rips me to shreds at times, but this is all I can share:

Someone in my life—not my husband or kids or anyone you may know well if you are an irl—suffers from a disturbing, undiagnosed mental illness. I have spent a great amount of time this year trying to help this person, only to be thrown under the bus and to be raged at, verbally abused, and falsely accused of outlandish “crimes.” To help you understand, I was accused of breaking into this person’s house and vandalizing property. False evidence was fabricated, and only by the grace of God, did the person not try to press charges. That is the cap of the crazy iceberg—the part that I can make visible. Imagine what lies in the secret depths below.

I have had to re-evaluate this relationship and redefine it. And it has been taxing and painful. I imagine that this person’s actual physical death will be less painful than the events that have transpired recently.  I won’t say more about this except to ask you to pray for this person as God brings the situation to mind.

Chapter Six: Mourning Papaw

The capstone of the year brought the saddest, most unexpected circumstance of all. My father, our papaw, was diagnosed with a GBM brain tumor in September.

In August, he showed no symptoms. He was ready to start the school year as the science tutor at our homeschool co-op and had 2 full classes of eager students. He came to co-op the 1^st week full of energy and ready to shape young minds. The 2^nd week, he was disoriented and retaught exactly what he had taught the 1^st week. The 3^rd week, he completely forgot that he was supposed to teach and showed up over an hour late. Then he did odd things like give a 1 question test, reteach the same unit yet again, and forget to send out homework emails… all completely uncharacteristic for an extremely dedicated teacher and former principal of the year.

In mid-September, I had to take off my worried-out-of-her-mind daughter hat and put on my co-op director hat and dismiss him from his duties. I had to choke back the tears as we sorted through many disorganized records and made plans to transition in his replacement. Nothing in his financial or teaching records looked anything like his quality of work. Before he became a teacher, he worked as an efficiency expert. He salvaged industries that were on the brink of ruin because of their lack of financial responsibility and overall disorganization, and now, he, the King of Efficiency, had no idea where his own class roster was. I was convinced he was in the early stages of Alzheimer’s. However, a few days after his dismissal from co-op, he collapsed at home and had to be ambulanced to the ER. It was there the mass on his brain was found.

The decision was made for him to receive treatment at Emory University Hospital. The tumor was declared inoperable; however, he was eligible for a clinical trial which would potentially reduce the size of the tumor and allow him to live for approximately another year. In preparation for the clinical trial, the tumor was biopsied and as the oncology team was finalizing his diagnosis and treatment plan, he developed a post-op infection—a brain abscess.

Everything flip-flopped. The previously too risky craniotomy became essential. The abscess had to be dealt with which meant brain surgery was inevitable. While “in there,” the neurosurgeon would remove as much of the tumor as possible. This was seemingly a blessing in disguise as the abscess provided a marker as to where to operate, and the surgeon was able to remove over 95 percent of the tumor. All that remained were microscopic bits that were too deeply imbedded in the brain to be removed. If he recovered from the surgery and if he was able to rehab to the point of sitting up and moving himself from bed to wheelchair and back again, then he could begin radiation which might just beat the tumor. He might not ever fully recover from any resulting brain damage, but he would live.

The time at Emory was an emotional rollercoaster. One day he was improving—sitting up, feeding himself, mumbling (he never regained speech) and signing. The next he was near comatose. One hour a doctor of a particular specialty would visit our ICU room and report it was a miracle that THAT much of the tumor was gone and he anticipated a full remission. The next hour, a doctor of a different specialty would come in the room, examine Dad, and shake his head in bewilderment.

Eventually, the fluid build-up around his brain became great, and the doctors deemed a shunt was necessary. We consented as we did not see another way for him to regain consciousness and be consistent in his progress. Soon after the shunt was successfully inserted, he was discharged from the ICU to a rehabilitation hospital closer to our hometown.

The new hospital was fabulous! New, clean, well-equipped and staffed by gracious, helpful, kind people. Although he was perpetually exhausted, Dad worked so hard. He made much progress with OT. The last day that I visited him at the rehab hospital, he was able to lift some light weights, sit up for about an hour, and play a game of Uno with me. He did not remember the rules of game play, and the OT had to tell him each move to make, but Dad enjoyed it. He made eye contact with me. He smiled. I was so thankful to have that last happy moment with him.

He made progress in his cognitive abilities, too. When he first arrived at rehab, he had the mentality of a young child, watching TV shows all day like Thomas the Tank Engine. By the end of his stay, he recognized all of us when we visited and was able to follow the news (kinda) and his favorite: football.

His time at the rehab hospital ended, and we made the decision to transfer him to a nursing home—temporarily we hoped—for the next level of rehab. He was still unable to walk and had to be transferred from the bed to wheelchair by a lift. My mom and I would not have the strength or equipment at home to care for him properly, so although it pained us deeply, we had him transferred to a nursing home in our hometown. I was the one present for his transfer on November 13, 2015. He was alert and communicating with me as best as he could with familiar words and signs. He even asked to talk to my mom when she called me and with a bit of effort, pressed the “end call” button on my cellphone himself. It was a Friday night—shot night for me—so when I knew he was checked in, safe, and comfortable, I tucked him in, turned off his lights and left him sleeping peacefully. I returned home to “do my chemo” and rest on Saturday and Sunday, when my mom would be by his side.

My phone rang at 7:00 a.m. on Sunday, November 15^th. I knew it wasn’t good because my mom respects my need to be undisturbed so I can recover from the side effects of MTX. Dad was in the ER with a high fever and very low blood pressure.

Michael drove me to the ER and wheeled me in (I’m too dizzy on Sunday to drive or walk safely). Within a few minutes of our arrival, we were given the news we had anticipated for 2 months: he was not going to make it. He had developed infection in his shunt. The infection had spread to his bloodstream. He had suffered a massive stroke with hemorrhaging, and his kidneys were shutting down. Our options were to have him transferred back to Emory where they would be equipped to MAYBE treat his stroke—although it was likely he would die in transport—or move him to hospice. We chose hospice, a decision we do not regret. It was a lovely facility with such a caring staff. We were in a home-like environment—quiet, peaceful, private.

The entire family had gathered. We knew he had hours, not days, remaining. After watching him struggle to breathe for the entire day, we all took a break to sit in the family area outside his room. The nurse gave us the go-ahead to leave his side, saying that his breathing had improved a bit and that he may have a few more hours of fight in him. His room was part of a suite with a great room just outside the door to his room. It was filled with comfy furniture and had a cozy fireplace, and friends had come to visit us. We sat nearby with his room door cracked and enjoyed the comforting visit of friends and the warmth of the fire.

Suddenly, I experienced a terrible, sharp pain in my abdomen and felt extremely nauseated—a common occurrence during my “recovery days.” It startled me back into the reality of where I was—I had allowed myself to relax and forget for a brief moment—and I felt compelled to check Dad. I returned to his room where I had a final, brief moment alone with him as I watched him take his last breath.

At 7:50 p.m. on November 15, 2015, my dad passed into the presence of The Lord, and his pain and suffering were no more.

They say in the face of death, your life flashes before your eyes. I don’t know what Dad experienced in that moment, but I know that as I faced it with him, the past year flashed before mine.

Some of my dreams died, but others lived and new ones were born.

My business nearly died, but it was spared. Actually it prospered.

I could have heard the words, “Your son is going to die.” But I didn’t.

I was worried I might die sooner than anticipated, and even though life with lupus feels like a crap shoot, I know that I am secure in God’s hands and He has given me more time to live for Him.

I did lose a relationship, an important one, but I also gained some freedom from dysfunction in my life that needed to die.

But here it was… the death that seemed imminent… the death that seemed to be the theme of the year…it had come, and my dear dad was the recipient. I know he wanted to fight it, and he did to best of his ability. He did everything he could to battle the tumor. He wanted to teach Brian Biology this year and then Chemistry next year. He wanted to see Ben graduate and then Brian. He wanted to be there for Christmases and birthdays and 1^st jobs and 16-year-old grandsons driving up to his house for the 1^st time. He wanted to see engagements and weddings and great grandchildren.

He got to see something, or someone rather, far greater: The Lord Jesus Christ. And because Jesus lives, we do not mourn without hope.

Perhaps 2016 will bring us more reasons to rejoice than to mourn. Perhaps it will be a season of healing, building up and laughing. Perhaps not. But this I know for sure: whatever my God ordains is right.

Whate’er my God ordains is right:
His holy will abideth;
I will be still whate’er He doth;
And follow where He guideth;
He is my God; though dark my road,
He holds me that I shall not fall:
Wherefore to Him I leave it all

Samuel Rodigast, 1676

 

Grace and Peace to you all in the New Year,

Dawn

Epilogue

Soon after I finished writing this, I left it saved in my queue for editing and publishing in a day or two. Then, I took my younger son to the pediatrician for a checkup. Soon after my dad’s death, my son—the younger one-- started making strange noises—unmistakably vocal tics. As I feared, he has a pediatric tic syndrome and will have to be examined by a pediatric neurologist soon. When he was younger, he used to get terrible migraines frequently, and it is possible that those were rooted in neurological problems and that he has had petit mal seizures his entire life that we didn’t know he was having.

Additionally, the pediatrician noticed that he has all the same markers for Marfan Syndrome that his older brother has. I will be calling Sibley tomorrow to set up an examination, and it is likely that he will be watched closely for the next 2-3 years as well.

It seems that 2016 will begin with multiple trips to Atlanta and another month or two of tests and awaiting outcomes. I am still convinced that whatever God ordains is right, but I would appreciate your prayers for me as I do the hard job of mothering two special needs children while living with a life-threatening chronic illness. I would appreciate your prayers my sons, too.

Photo Credit: https://www.pexels.com/photo/a-person-holding-red-roses-6841405/