Category Archives: Parenthood

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~

 

 

 

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

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 

Motherhood–a cause for celebration

Motherhood. It’s the most underpaid, yet rewarding job on the planet.   It’s the most difficult task a woman can ever hope to undertake, yet the most innately intuitive undertaking a woman will ever face. Today, we mothers are fêted.

I know young moms, older moms, single moms, two-parent family moms, adoptive moms, foster moms, stepmoms, IVF moms and moms who’ve had their kiddos the “old-fashioned” way. I know moms who parent idyllic, storybook families and moms deeply ensconced in dysfunction accompanied by estrangement.   Motherhood is a tough job and oftentimes a messy business, but we mamas get it done.

I’m blessed to know mothers who, in addition to parenting and running a household, are also nurses, educators, entrepreneurs and business owners, administrative professionals, sales professionals, missionaries, mental health professionals, editors, writers, designers, media moguls, restaurant staff, technology gurus, managers, yoga instructors, athletes, humanitarians, philanthropists, heads of nonprofits, lawyers and accountants. Many of you are not only acquaintances but also dear friends who have taught me much about life and how to live it. Many of you have parented children despite extreme adversity and suffering unimaginable tragedies. You, my friends, have unwittingly taught me so much. You’ve taught me how to remain strong when the odds appear to be stacked against me. You’ve shown me how to walk with hope, faith and grace when times are tough. Through example you’ve illustrated how to love and give unconditionally, when truth be told, I want to stomp my feet and scream in frustration at the top of my lungs. A few of you have rescued me in my darkest hour, throwing me a life preserver just before I went under for the final time. Above all, you’ve taught me how to love and laugh and enjoy each day to the FULLEST. I am grateful for the mothers I’ve met along the way and even more grateful for those I call friend. I celebrate you every day, but today is your day. You celebrate you—in whatever manner you see fit for the queen you are. xo

No language can express the power, and beauty, and heroism, and majesty of a mother’s love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star. ~Edwin Hubbell Chapin

Seven Years

He defends the cause of the fatherless… ~Deuteronomy 10:18

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It will be seven years tomorrow since Greg and I took Jackson into our arms and hearts as our son. It stands to reason that April is an emotional month for me. I do a lot of soul searching and reminiscing in the weeks preceding and following April 13th. This morning, in the shower, I was having an imaginary conversation with God. I was imagining how our lives would’ve turned out if God would’ve come to me seven years ago and said something to the following effect. Meeting Jax

My daughter, I know you and Greg are on board with the adoption seed I’ve planted in your hearts, but let’s talk a little bit about what it’s going to be like for you. What if becoming parents to this very special little boy I have for you, costs you relationships with friends and family members, as well as costing a lot of time and money—not only up front, but down the road because of medical care and therapies. Will you be okay with this? What if becoming this little one’s parents causes you to wring your hands and lay awake at night with a heart full of worry for the day ahead as well as for his future. Will you be okay with this?

I can’t speak for my husband, but I can tell you a conversation like this with God prior to boarding a plane to Ethiopia would’ve given me great pause. I’m pretty darn certain I was far too full of myself, far too wrapped up in life, and far too uncertain of my capabilities to have yielded to such a plan. And this is precisely why God does not make us privy to the details of all He has in store for our lives. He knows what we’re capable of, despite our being so uncertain of ourselves. And He knows we may turn tail and run if He were to paint the whole picture for us ahead of time.

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I can promise you from experience, however, your life will be so very rich if you step out in faith and let God have his way with your heart and your life. God knows you. Just as He knew us, our hearts, our inmost being, He knows you and your heart and the great things you’re capable of. I perish the thought of a life without Jackson. He enriches our lives in so many ways. And you can rest assured; God has equally wonderful plans in store for you. Trust Him!

Jax Halpat

Thank you, God, for knowing us so much better than we know ourselves. Thank you for this beautiful life you’ve blessed us with.   Thank you, for allowing us to be mom and dad to this precious boy of yours.

There is no friendship, no love, like that of the parent for the child. ~Henry Ward Beecher

Unfettered

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This post is somewhat of a follow up to my most recent post, “Untrammeled,” in which I spoke of the ways off-road biking has impacted our family. In this post, I’m writing to express just how much the people we’ve met along the way have impacted our family.

If you’ve read more than a few Sing. Dream. Hope. Pray. posts, you’re well aware of my thoughts and experiences regarding autism and the challenges and complexities of life as it relates to parenting a child on the autism spectrum. I’ve also written as to isolation (for both the child and parent(s)) as a high-ranking by-product of autism. The past seven years have run the gamut of these experiences—from good to bad and all points in between. Some groups and activities I thought would be beneficial have turned out to be detrimental. Conversely, there have been other endeavors we’ve undertaken with more than an ounce of guarded ambivalence and have been pleasantly surprised at the outcome. Without a doubt, mountain biking falls into this latter category.

I can’t speak for my husband, but for the first time in seven years, I feel like I’m part of a community, or village, if you will. For once, I feel like we’re not alone in this phase of life. Over the past seven years, I’ve witnessed Jackson being berated by adults for his behavior. We’ve been ostracized and literally turned away from places and events, going so far as to have doors closed in our faces. Unless you have a child with developmental challenges that, on occasion, manifest themselves in “undesirable” behavioral quirks and actions (sensory overload=flight response), you simply have no idea as to the stress a family can experience. A “thanks, but no thanks” mentality has been a prevalent theme in our lives. Until now, that is.

Our local biking community unwittingly and unintentionally provides a sense of belonging and inclusion. It’s a “safe” space and place, for not only Jackson but for our family. We’re accepted just as we are—warts and all. In typical Jackson fashion, he has the rule of the roost at our local bike trails. He’s the proverbial mayor of Club Scrub. He knows everyone and everyone knows him. When he’s at the trails, it is his domain. And the folks who share his domain couldn’t be more gracious. If you know Jackson, then you know he is all up in your business. People on the autism spectrum have difficulty realizing and navigating social boundaries, and Jackson is no different. It’s part and parcel of who he is. Blessedly, the folks we meet and spend time with, aren’t offended by this. Hallelujah! For the first time in seven years I’m not making excuses and apologies. I don’t leave the trails with tears of embarrassment, humiliation or indignation.

The grace doesn’t stop there, however. In addition to welcoming and embracing this little trio of merry makers, folks have literally taken it upon themselves to free Greg and me up to ride and participate in events singularly and as a couple by watching over Jackson at the trails. For the first time in years I’ve been afforded opportunities to socialize, participate in conversation and dare I say, make friends. Unless you’ve been marginalized by a life event, you simply cannot comprehend the overwhelming impact this gift has on a person’s quality of life.

For this acceptance and grace I offer my profound gratitude. Thank you, fellow MTBers. You are a blessing.

 

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A Pencil Box and a Broken Mold

The Tell Tale Pencil Box

I knew what was in munchkin’s backpack as soon as I picked it up. The sound of something rattling around in hard plastic painted a clear auditory picture. I knew it was going to be munchkin’s pencil box. And my breath caught in my throat. It was a bittersweet realization that the school year officially ends tomorrow.

Star StudentI could not be more pleased with how this year turned out.   Jackson’s teacher has far surpassed any hopes or dreams I had for a teacher.   Heading into kindergarten, my teacher characteristic wish list read like this:

  • Kind
  • Understanding
  • Nurturing
  • Passionate about teaching children
  • Committed to bringing out the best in kids
  • Tenacious (won’t throw in the towel when the going gets tough)
  • Creative
  • Energetic
  • Experienced
  • Seasoned, but not old
  • Young, but not too young
  • Well-versed in the land of IEPs
  • Fun
  • And most of all KIND

Yep. If asked, those were the qualities I was seeking in a kindergarten teacher. (And yes, I realize that list sounds a bit like a Match.com ad.)  And you know what? We got that and a whole lot more. Jackson’s teacher was AH-mazing. She brought out all the best in him over the past ten months. By the end of the first week of school, she calmed many of my fears and assuaged most of my anxiety. And with the exception of one little hiccup over “seat work” early in the term, Jackson positively flourished. And here we are at the end of the school year, and I don’t want to see her go.

He adores her.

This past Monday made me revisit my past anxieties. Jackson had a substitute teacher. As always, his actual teacher was very diligent in writing copious notes to the substitute, explaining Jackson’s tendencies and what to expect and how to be effective in reaching/dealing with him. En route to school, I informed Jackson of the situation and gave him reminders of what to do in the classroom. I knew the kind of day he had, however, the second I laid eyes on him at the end of the school day. “Mom, I have to tell you something,” he said. “Did you have a bad day?” I asked. “Yes,” he replied. And the tears just started flowing from his big brown eyes. Apparently he had blurted out an (or possibly more than that) answer in class. According to Jackson, the teacher raised his voice at him and told him he was being rude. And, yes. I’m sure that’s how it appeared. But it wasn’t intentional. It never is. Most often, Jackson simply cannot help himself. He is effervescent. (Think of a soda shaken and opened and you’ll have a pretty accurate illustration of Jackson. All day. Every day.)

Classroom birthday celebration

All this to say, what happened to Jackson Monday brought it all home for me. It made the end of the school year a realization, as opposed to an impending happening. The desperate hope I experienced last summer resurfaced just like that. I was again face to face with the fraught, all-consuming desire for Jackson’s next teacher—his first grade teacher— to “get” him, to understand him, to see his potential, and perhaps above all else, to be a tenacious soul who will never give up on him. In other words—a desire for Jackson’s next teacher to be a carbon copy of this year’s teacher. But I know that’s not possible. It’s just not. There is only ONE Mrs. Peterson.   The good Lord broke the mold when he made her. She’s just that special.
Trivia

One looks back with appreciation to the brilliant teachers, but with gratitude to those who touched our human feelings. The curriculum is so much necessary raw material, but warmth is the vital element for the growing plant and for the soul of the child. ~Carl Jung

There was no time and half in the contract for this gig.

There was no time and half in the contract for this gig.