Fixer

Roughly 892 miles as the crow (and airplane) flies, that’s the distance we recently traveled for a second opinion for J-man’s epilepsy. Judging by the reaction to this news by many folks, this may seem extreme, but Cincinnati Children’s Hospital and Medical Center is one of the top-ranked hospitals for pediatric neurology and neurosurgery for serious neurological problems such as epilepsy, head trauma and brain tumors. They are the best of the best.

Last fall, after of eighteen months of easy-breezing, seizure-free “maintenance,” J-man’s nocturnal seizures returned in full force. After months of unsuccessful tinkering with medication dosages, I felt it was time to seek a second opinion. Hence our travel to Ohio.

At the conclusion of J-man’s initial examination/evaluation and consultation with a pediatric neurologist at CCHMC, the doctor recommended an MRI under sedation and an in-patient EEG that would take place over the course of three-full days and nights. I had a team of prayer warriors praying the EEG would capture a seizure. As fate would have it, J-man did not experience a seizure during his stay in the hospital. Only the erratic brain activity with pre-seizure spikes we know to be continually present was captured.  I liken this to taking your car to a mechanic because of a noise you’re hearing, only for the noise to be inconveniently absent during the mechanic’s inspection. That’s an obvious oversimplification, of course, but you get what I’m saying. (Of course, he had a seizure the night he was discharged from the hospital.)

Our stay wasn’t all for naught, however. We did learn some things about J-man and some of the things that go on inside his busy brain. We learned terms such as slight asymmetry, temporal horns, single punctate focus, frontal white matter, susceptibility artifact, right corona radiate, microhemorrhage, dystrophic calcification, and T2 FLAIR, just to name a few. I was a Google fanatic each morning when a new report appeared in J-man’s online chart. The term that sticks with me most is “prior insult,” as it relates to microhemorrhage and dystrophic calcification. As an adoptive mother, I’ve always wondered about the ramifications of a most likely absence of pre-natal care for J-man’s birth mother, as well as what the first few months of his life were like.

With respect to the EEG, the findings pretty much mirrored previous test results. Abnormal EEG. Focal epileptiform discharges. Focal interictal epileptiform abnormalities that have a high correlation with seizures that are partial in onset. The one bit of news that was news to me is that the discharges occur in the right centeroparietal head region. As odd as this may sound, I always wondered what part of his brain was affected.

Additionally, while in the hospital, we were fortunate to meet with Dr. Donald Gilbert, professor of neurology and pediatrics at University of Cincinnati and Cincinnati Children’s Division of Pediatric Neurology. Both J-man and I wanted to consult with someone regarding the tics he struggles so greatly to manage. What a blessing it was to sit with this man as he explained so thoughtfully and thoroughly what is happening in my son’s brain and how best to help him manage the uncontrollable movements and sounds that afflict him. We now understand that J-man’s involuntary movements are actually  Tourette Syndrome. We also know people with Autism Spectrum Disorder oftentimes have some degree of Tourette Syndrome, too. Dr. Gilbert provided information to J-man’s school as well as valuable information to be included in his IEP. Again, what a blessing it was to consult with him while at CCHMC.

None of this is earth shattering. And, God willing, this is not life threatening. It’s just a change of tack. J-man began a new medication and medication regimen that have absolutely changed his life for the better. He is a different person. The medication he has been on for the past two-plus years was a nightmare. It rendered him listless, fatigued, and unable to process and retain information–horrible by-products for someone who has significant learning challenges to begin with. I am so happy to say, as of this past Friday, J-man has been seizure-free for three-plus weeks. Praise God!

 

 

 

 

 

The last thing I need to mention, is that upon awaking our final morning in Ohio I had an epiphany moment. God spoke to me clear as day. To paraphrase, he said, “You are a fixer, but you can’t fix this. And that’s okay. Your son is perfectly made. You just need to let this be. Love him as he is. There are no surprises where I am concerned. Your son will be just fine.” This divine revelation lifted such an enormous weight off my shoulders. It was freeing. To me, these words confirmed that I’ve done everything humanly possible to get J-man the care he needs with respect to his diagnosis of epilepsy, and there is nothing for me to “fix.” Although I “knew” all of this, what a much-needed reminder that although I’m in charge, I’m not in control.

I thank each and every single one of you for your concern, prayers, positive thoughts and vibes, and support. You have no idea how grateful I am to have you in our corner.  x

B~

 

 

 

Women.

We come in all shapes, sizes and skin tones. We hail from every far-flung corner of this earth. We are daughters, sisters, mothers, grandmothers, great (and great-great) grandmothers, aunts, nieces, wives, husbands, friends and neighbors. We have different faiths, beliefs and come from vast socio-economic backgrounds. We are many things to many people.

We share common elements of DNA. We are all made of bone, cartilage, muscle, tissue, skin, tendons, sinew, vessels, organs, and we all have blood coursing through our veins. We give birth. We work doggedly. We love with reckless abandon. We care. We nurture. We raise up. We build up—oftentimes to the detriment of our own true self. These things make us more alike than different, in my humble estimation.

We are fierce. We are a force to be reckoned with, independently. Together? Forget about it. We rule this doggone world.

Ladies, I celebrate you not only today, International Women’s Day, but every day. I’m elated and honored to be in your company.

Reality Check

You are never too old to remind yourself that your validation does not rest in someone else’s acceptance of you. I love the adage, “What you think of me is none of my business.” As simple as this statement should be to remember, I oftentimes struggle to recall this simple pearl of wisdom.

Also, never, ever, not for one single solitary minute, expect what you did yesterday to account for something today. All the good and amazing things you did and accomplished yesterday will not carry forth into today. This is simply the law of nature. Just as a fresh start and daily do over are great to make up for some grievous act you perpetrated (or something you failed to perform) yesterday, the same is conversely true for the good things. Today is a new day. You are starting fresh and anew, my friend. Make today your best day. After all, now is all we have.

A Life Well Lived

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“Her life was not an easy life.  She experienced heartache and hardship, but it was a life well lived.” This is a phrase I found myself repeating to mourners who came to pay their final respects at my mother’s funeral this week.

I’ve penned more than one post in the past (As is the mother, so is her daughter. Ez. 16:44, Happy Special Birthday, A Very Special Mother’s Day) that offered a glimpse into my mother’s 86 years on this earth.

The Great Depression.  The deaths of two husbands and one infant daughter.  Life as a widow raising four children—two of whom gave her more than her deserved share of trouble (yours truly among them). The deaths of both parents and five siblings—three sisters and two brothers. Decades plagued by the effects of emphysema (chief among them—a susceptibility for pneumonia).  Cancer.  These are a sampling of challenges my mother faced in her 86 years and seven months this side of heaven.

 

Love.  Laughter.  Family.  True, genuine, nurturing and caring friendships.  Travel.  A 25-year career working for folks who weren’t only employers but dear friends as well. Secure knowledge in her place in heaven upon departing this earth. These are the things that made for a life well lived.

Ruth Ann Cassella;  born January 6, 1931 – died August 4, 2017, following a life well lived

A Very Special Mother’s Day

Have you ever met someone so unassumingly tough that when they demonstrate their power and might your jaw hits the floor?  That’s how I feel about my mom.  I’ve penned a few blog posts about my mother over the years, so this statement may not come as a shock to many of you.  I, however, continue to be amazed by this gutsy octogenarian’s exploits.

Shortly after her 86th birthday this past January, my mom was diagnosed with small cell carcinoma (lung cancer).  I don’t think this was truly a shock to anyone.  A former tobacco smoker, my mom has emphysema and a history of severe bouts of pneumonia.  The ultimate diagnosis, however, was perhaps more devastating to me than to my mom.  When I questioned her as to how she felt following the initial diagnosis, my mom said, “It’s going to be what it is.  If Saint Peter opens the gates for me, then I’m ready.”  That peace—her peace—became my peace.  There was no other way for me to accept the circumstances at hand.

So, here we are four months later, and my mom just completed her prescribed round of chemotherapy yesterday, May 11th.  Additionally, she began radiation treatments—a prescribed course of thirty treatments to take place twice daily over the course of fifteen weekdays.  The first two days of radiation piggybacked her final two days (6 hours and 2 hours, respectively) of chemotherapy.  I don’t know about you, but this schedule is daunting to even me.  But you know what—my mother handled it like Muhammad Ali handled Sonny Liston.  I am awestruck.

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Something and someone else I need to make mention of in this Mother’s Day tribute is my sister, Karen.  She has been a steadfast anchor for my mom for not only the past few months, but for years.  She is there, day in and day out, meeting what needs my proud mother sees fitting to share.  As a matter of course, she has always been there to tend the flowers and lawn in summer and snow-covered driveway in winter as well as all needs that fall outside of my strong (feisty) mother’s capabilities in seasons between. But since my mother’s cancer diagnosis, my sister’s responsibilities have grown exponentially.  She is the keeper of myriad appointments, the sole source of transportation to and from the many appointments, and the general caretaker of all things beyond my mother’s abilities.  Don’t misconstrue this, however.  I am certainly not insinuating my mother is incapable, because she absolutely is not, which amazes me, but I digress…

So, as we approach this Mother’s Day, I’m giving my biggest, loudest shout out to my mom for her continued desire, willingness and ability to kick ass.  (Yes, I cursed; butt just didn’t sound as effective.  #eyeroll)  Happy Mother’s Day, mom.  You are amazing!  You’ve put forth enormous (literally and figuratively) shoes to fill.  I hope to leave this life one day as a fraction of the woman and mother you are.

Unless…

This.  This photo right here.  You have no idea what this photo represents to G and me.  

Unless you have a child who has difficulties interpreting and comprehending the subtle nuances of social interaction, you more than likely don’t understand the magnitude of this photo.  Unless you have a child who doesn’t “get” the give and take of social interaction, this photo probably seems mundane.  Unless you have a child who doesn’t have a single real and true friend, you most likely don’t grasp the overall import of the seemingly simple interaction depicted in this photo.  Unless you have a child who comes home from school in tears, sobbing that his classmates think he’s the dumbest kid in his class and ostracize him from much of the day’s classroom and playground interactions, you can’t possibly comprehend the joy this photo brings to two concerned parents.   Unless your child pleads with you to “find a friend” for him, you can’t possibly understand how this photo shatters two parents’ hearts into a million tiny shards. 

A friend is something most of us take for granted, yet is so very vital to our complete wellbeing.  We were created to be social creatures.  When that simple, yet necessary component is lacking in our lives we are incomplete.  It’s a vacancy we feel in our soul.  And when you try your very best, oftentimes forcing the situation, the rejection can be gut wrenchingly debilitating.  

This weekend we had the pleasure of spending Friday evening in the company of a family we’ve been promising to have over for dinner for years.  They’re a family we instantly connected with at the skatepark years ago–G with the father, J-man with the son, and I with the mom.  Yet, as life oftentimes does, it got in the way of the six of us getting together.  Yes, G and I had a wonderful time conversing and laughing with “N’s” parents Friday night, but the highlight of the evening was how J-man and “N” related and interacted.  It was a beautiful sight to behold, stopping G and me in our tracks time and again throughout the evening.

Sunday, while out on our 52-mile pedalabout, I received a text from “N’s” mom stating he wouldn’t stop asking when he could see J-man again.  I replied, telling her we’d be back by one o’clock and he was welcome to come over.  The two boys again connected instantly.  They picked up where they left off, engaging in NERF wars, sword fights and playing Minecraft.  Even the video game had serious interaction–communication, teamwork, instructing and encouraging one another and trash talking.  I was in HEAVEN! 

I’m a firm believer in the adage it’s the little things in life that make life so very rich.  This photo is proof of that belief.  Thank you, God, for answered prayers. 

The greatest healing therapy is friendship and love. ~Hubert H. Humphrey 

Beauty is in the Eye of the Beholder 

This morning I took a little ride along a canal I frequently traverse.  The canal runs parallel to an exclusive golf and country club.  Although I’ve never been in this particular club, I can see quite a bit of the golf course’s perfectly manicured fairways and greens from my vantage point.  The pristine landscape doesn’t hold a candle to an untended hedgerow of bougainvillea that runs along the backside of the property’s concrete privacy wall.  The people inside those walls have no idea of the beauty and splendor on the backside of that wall.  The colorful flowers beckon a wealth of birdlife and butterflies.  


Although I’ve not visited this particular club, I’ve been to several just like it, usually to play golf.  They’re all interchangeable with the same ostentatious surroundings and an overabundance of obnoxious people.   Case in point, one time, about 10 or so years ago, the mister and I were playing a round of golf with friends at a club where we were members.  I was pulled aside at the turn by a golf course employee who informed me my Lija golf shorts were considered to be too short by a group of ladies who were also playing that day.  I was humiliated, to say the least, and forced to purchase a golf skort that reached well below my knees on my 5′ 3″ frame.  Yeah, good times. 

All this to say, the folks on the inside of that wall can keep their perfectly manicured property and I’ll happily stick to riding my bike on the far side of the canal, taking in the breathtaking view of unkemp bougainvillea, birds and butterflies.  Beauty is indeed in the eye of the beholder.