ASD GameChanger: Part 2

In my last post, I explained that after a long, uncharted journey of self-doubt and frustration, my hunch was validated that my son was “On the Spectrum” after six years from when I first knew it in my heart of hearts. He has recently been identified as having Asperger's.

Technically, Asperger's isn’t even identified as Asperger's anymore. It falls under the scope of Autism Spectrum Disorder (ASD) or just Spectrum Disorder. But for the sake of explaining specifically where Jacob falls on this endless spectrum of uniqueness, I will be referring to what he was diagnosed with as the old-school term “Asperger's” in this post, not to be disingenuous, but because it allows me to better take you on a “tour” of his mind and of my parenting journey.

We’ve all heard it said that you can’t just a book by its cover. That overused, but perfect expression applies to disabilities too. Not all disabilities are visible. In fact, whenever I think of all the “exceptionally abled” children I have taught over the years, only a handful of them have had physical disabilities, but countless have had mental hurdles. The same is true for Jacob. His are mental.

Perhaps the biggest hurdle I’ve had to jump over this year, as a parent, is how often I hear that my son “doesn’t look like he has problems.” But before I can explain to you how I combat these misunderstood observations, I invite you to travel back in time to my childhood.

Childhood Misconceptions about Mental Health

I’m a child of the 80’s and 90’s. Born in December of 1980, my mom jokes that the timing of my birth was the perfect tax write-off. (As a taxpayer, that’s my favorite joke to date!)  So, I spent all my elementary years as a product of an education system where the Special Needs program was set up quite differently than it is today.

Back in the day, the students who were identified as “Special Needs” were all put together into one room with one teacher and an aide or two. That room was labeled as the Special Education Room. Whether they had Cerebral Palsy, Down's Syndrome, or cognitive delays, they were all grouped together. These students neither came into the general education classroom, nor ate lunch with the “typical” students. Everything from field trips to awards day events were done separately. The mean students in my day used words like “retarded” and “mental” to describe these Special Needs students. Even back then, it upset me how intolerant others could be.

Growing up in an era where isolation of Special Needs students was the norm, not just in my school district but in the public education system in general, contributed to the misconceptions I had about Special Needs and mental health. Mental health simply wasn’t talked about openingly. And those rare moments when it was uttered in secrecy, it was treated as a negative topic. In addition, students who had physical disabilities were the ones considered to need special services, whereas the students who had mental problems were viewed as the defiant, problematic students in the general education classroom.

Now, fast forward to decades later, as not only a determined mom, but as a loving teacher who values her students’ lives and wants them to grow beyond the realm of achieving distinguished standardized test scores, I’ve become an advocate for mental health. I care how my students feel about themselves and their lives. I want them to learn from an early age that they’re invaluable and their lives matter.

So when I first realized that my own child needed mental help, more than what Jason and I could give, it was extremely important for me to take that first step. Yet, it was painfully difficult, to go seemingly against decades of the dysfunctional norm of education that was etched into my brain. (I wrote about some of my biases in the post entitled The Importance of Mental Health.) But once I swallowed my pride and conquered these biases, I jumped on board with advocating for children such as Jacob.

Jumping onboard was the only way to go. After all, in order to be an effective classroom teacher and mom, I couldn’t very well have one foot still on the shoreline and one on the deck. Whether I liked it or not, the ship was setting sail.

I've become more aware of the importance of mental health,
especially as it relates to my own family.

Education Today

I’m absolutely amazed at how far public education has come! No matter what types of labels students carry, they are not excluded for the general education classroom. They get the opportunity to learn and function in a regular classroom setting. This doesn’t mean that their disabilities should not be a factor when teachers are measuring goals and planning lessons. It just means that they receive the accommodations they need and are not isolated from the rest of their peers. For this mom, I’m thankful for that. How are students like Jacob supposed to learn whenever they are set apart from their peers and no one models the correct behavior? Modeling correct behavior and problem-solving skills is essential in order to help students like Jacob become and stay successful in education and life.

Now, I will be the first to admit that everything is not perfect in the education system for Jacob. And no, it’s not specific to his school, educators, or district. In fact, I absolutely love and respect Jacob’s educators and thoroughly enjoy the district in which he and I are part.

However, no matter which district, children with Jacob’s type of giftedness endure daily struggles that others aren’t always able to identify. Like I mentioned before, Jacob does not “look” the part of a Special Needs student.

Special Needs comes in
many different forms.
Some are unseen.

He’s seemingly outgoing, witty, and has a great personality. But, when it comes to the classroom, Jacob struggles with everything from following directions, to movement, from recognizing social cues, to being able to finish classroom work.

For example, Jacob does not follow directions well in the classroom setting. His mind is focused on getting out what he intends to speak that he’ll talk right over his teacher and not realize it.

Or, if directions aren’t broken down into smaller steps, he gets frustrated easily and has meltdowns.

Jacob likes to wiggle and move around often. He’s always looking for a way to “get comfortable” and sitting upright at a table or desk rarely works for him. And because of his poor handwriting skills, he’s slow at finishing his work. Even though he can do advanced math in his head, he cannot physically get worksheets finished because he experiences hand cramps from poor motor skills.

Finally, it breaks my heart that Jacob does not have any friends at his school. He does have friends at our church because he has discovered those children are more tolerant and love him for who he is. And he has some friends who live in our community. But as far as school goes, he is a loner.

It’s not because Jacob doesn’t want friends. He actually prays nightly for one to come his way. It’s that Jacob has very poor social skills with peers. He dominates conversations (remember, he has to get whatever is on his mind out, even when it doesn’t pertain to the conversation) and cannot always read social cues when students are disengaged with him. When he has conflicts or disagrees with his peers, he tends to get frustrated and angry quickly. His anger then spins out of control, and before the teacher blinks, Jacob is having a meltdown. Then, it’s only a matter of time before the anger turns to sobs as he reflects on his behavior and agonizes that he’s a “bad” kid who no ones likes.

Complete and utter heartbreak.

Not just as a mom.

Not just as an educator.

But as a human being who believes in loving others and wanting them to succeed.

To see a small child fight with his inner-self, and want to change, but not know how…

To see Jacob wrestle with his decisions and wonder if things will get better.

It’s tough. So, the right diagnosis is only the beginning. I recognize that there are still hurdles to overcome concerning students like Jacob. And while there are no perfect one-size-fits-all easy solutions, there is honesty.

The honesty of identifying what it truly is that my son needs. The honesty that I will have to advocate for him for years to come. The honesty that awareness is the first step to take before a solution is successful.

Labeling

Over the past decade in my educational career, I have taught hundreds of students, and if there’s one thing I’ve noticed, it’s how quickly students seem to have a label these days. I struggle with parents who use a label as an excuse for their child’s behavior. Yet on the other hand, I recognize that to an extent, there is validation in the labels.

Perhaps the thing I struggle with the most is not wanting to come across as a hypocrite with my own child. Yes, his label explains why he is the way he is. And while a label is a starting point to get him the help he needs, I try to be extra conscious that it doesn’t cross the borderline of an excuse. Finding this balance is going to take time.

After all, parenting in general, Special Needs or not, is a learning process.

Trial and error.

Parenting is trial and error.

Parenting

Have you ever had one of what Oprah deems as an “AHA” moment in your life? Well, a few short weeks ago, I had my first one from a parent’s viewpoint. And boy, was it refreshing!

I came across an article that explained every component of Asperger's, from problematic areas, to how the Autistic brain functions. Reading more information about the topic was enlightening because it answered so many questions I had about Jacob’s behaviors over the past six years.

All these years, things Jacob said and did wouldn’t make sense, and we passed them off as weird quirks, but then they started getting in the way of life...texture with food and surroundings, clothes and how they feel, poor social interactions, not picking up facial cues, focusing on random topics of discussions, hyperactivity, lost in own world and self-absorbed in conversation, etc.

After I read the article, I learned that all these things are components of having Asperger's. So, while Jacob was diagnosed with only the hyperactivity component of ADHD, it’s really part of his Spectrum Disorder. The same with his Sensory Modulation Disorder. All these different diagnoses, even the DMDD (which exhibits severe outbursts of anger) can also be typical of someone struggling with Asperger's.

Before I discovered the article, I was extremely hard on myself as a mom. Everywhere I turned, I would compare how other people’s children behaved compared to Jacob. I couldn’t figure out how my friends seemed to have such perfect kids, well-behaved in school and church.

Deep in the shattered parts of my heart, I felt like I had failed miserably as a mom. I felt like a complete loser every time I left Parent Teacher Conferences. I spent many hours in tears from not knowing what to do.

Every form of discipline imaginable didn’t seem to work on improving the situation of how Jacob acted. To make matters worse, there were comments that I would get from complete strangers in public, especially when Jacob voiced his frustration about something.

“Are you going to let him talk to you like that? I smacked my kids upside the mouth if they talked to me like that.”

“Have you tried spanking? He needs a good ol’ fashioned lickin’.”

Perhaps the most shocking one was just this week from an electrician who was at our house giving us a price quote to rewire our basement. He was leaving when he noticed Jacob was talking over me. The electrician looked at Jacob firmly in the eyes and went off on him. “If I were your mom and dad, I would use a belt. Do you know what a whoopin’ is? It’s this close (holding his fingers spread apart by an inch) to a beatin’.” I looked up to see Jacob crutching to the wall in disbelief and fear. Needless to say, we went with a different electrician, and one cheaper at that.

Even though I had tried spanking and time-out, taking away privileges, etc. all these years, nothing seemed to work consistently. By the time Jacob was in first grade, I was completely broken and at a loss. I even entered into hopeless depression from feeling like I had screwed up everything pertaining to parenting.

It has been a very long parenting journey, and one of self-discovery. These days, I choose to surround myself with a support system who prays for me and loves me instead of judging me. I’ve slowly started coming out of my parenting depression.

My church has become instrumental in this parenting process. I found that the more open and honest I am about my struggles, the more help I receive from those who make a difference in my life.

Sometimes that help comes in form of a Kleenex as I sit at a kitchen table sobbing about a stressful week. Other times, the help comes from a sweet “thinking of you” card, or a hug from a favorite friend. Smiles at church, positive comments from unexpected colleagues, and time of reflection with my pastor have all been solutions that have helped me in my parenting journey.

And even though the journey is far from over, I’ve learned to take it day by day, and to keep sailing forward. After all, God specifically picked me to be Jacob’s mom out of millions of other candidates. That must mean that I haven’t screwed up too badly...yet.

Criticism

Now, I know the words I speak will have critics. These days, there are critics no matter what one says or does. I even know people who have strong opinions about all topics. But, this is where my journey has taken me. And in the spirit of doing what’s best for my family, I have chosen to convey what God has put on my heart. Thus, I leave you with two vital words…

Awareness.

Acceptance.

All children deserve to be understood and
 accepted.

ASD GameChanger: Part 1

Have you ever been 100% sure of something even though everyone around you thought you were crazy?

(And no, I’m not talking about NCAA tournament picks.)

I’m talking about that sixth sense that we moms get when we know something isn’t status quo about our child, yet we struggle to articulate exactly what the “something” is.

Every since my son Jacob was 18 months old, I knew that something seemed different about him. Like other toddlers, he was energetic, cute, and intelligent, but there were things that he would do that didn’t seem to fit the “norm”. Besides categorizing all his toys by color and shape at this incredibly young age, he had the unusual ability to sit for 45 minutes at a time to build with blocks and work puzzles.

Yes, at 18 months old.

Over the years, as I watched Jacob grow, I watched him develop inner struggles with how he processed daily situations.

One such occasion, he and I were playing Hide-and-Seek when he was two. I hid in the my walk-in bedroom closet behind some luggage. I listened as he opened the closet, but then shut it again when he didn’t see me. He became angry. “I hate my mom!” he stomped off to his room and cried. When I tried to comfort Jacob, he reasoned that he thought he was alone for good and that we didn’t want him anymore.

Can you imagine your two-year-old not only being able to articulate this, but processing these disturbing thoughts through a simple game of Hide-and-Seek?

At age four, Jacob would complain that one of his preschool teachers hurt his arms whenever he had to sit in her lap. This puzzled me because she is a phenomenal preschool teacher friend that I highly respect. She would never hurt anyone, especially my child. This was the moment I realized that Jacob was overly sensitive to touch. But, I didn’t understand why.

There were several incidents from ages four to five that didn’t make sense at the time, but would be explained by others as “Jacob just isn’t ready for preschool,”

or “Jacob has been an only kid for so long that he doesn’t know how to socialize with peers.”

Yet, I didn't agree with these statements. As an elementary teacher, I’ve become naturally intuitive when a child processes information and sees the world in an extraordinary way. Jacob was able to process information in a unique way that I haven’t seen many of his peers do.

I vividly remember the day Jacob, at age five,  walked into my second grade classroom and told my team teacher all the details he had learned about Egypt and the Sphinx from a self-study Project Based Learning (PBL) opportunity my preschool teacher friend gave him. The second grade teacher was shocked, and replied to me, “He’s really smart! He’s going to need you to advocate for him in his education.”

At the time, little did I know how true that statement would be.

*****************************

When you first meet Jacob, he doesn’t seem like an atypical eight-year-old. In all the ways that matter he is. He excitedly showcases his Star Wars lightsabers, tells about the newest project he’s engulfed in, and likes to tell jokes. Adults find him honestly refreshing, outgoing, and endearing.

However, Jacob is anything but typical. I previously shared some of his back story in my blog entry The Importance of Mental Health. In that entry, I explained all Jacob’s diagnoses and what they were...The DMDD, ADHD, and Sensory Modulation Disorder. Jacob also is paranoid and suffers from anxiety. From the time I wrote that article in August, until December 2017, Jason and I were trying our best to work with doctors and school educators to determine the best practices and medicines for Jacob.

Even though a psychiatrist and psychologist both agreed with the diagnoses, I didn’t. The ADHD didn’t really seem to sum up Jacob’s problems. And, there were other oddities that no one addressed.

One day as I was conferencing with Jacob’s medicine prescriber, Heather, trying to figure out what the medicine options were, I seized the opportunity to share my opinions. I started with the sentence, “Look, I know I sound crazy, but I can’t help but think Jacob may…”

She interrupted my thoughts, “Have a type of Autism Disorder?”

“YES!!” I screamed and leaped up off the couch. “Am I crazy for thinking this? I mean, I’ve mentioned this before, but everyone else thinks I’m crazy because he doesn’t fit what people envision is the textbook definition of Autism. And I’m not buying the ADHD.”

Heather smiled. “You’re not crazy. Otherwise, if I didn’t see specific tendencies also, I wouldn’t have known what you were thinking. How long have you been feeling this way about the Autism?”

“Well, since he was two, but I had nothing concrete to prove it.”

Six years.

That’s how long it was on my mind. Finally, I met a professional who didn’t think I was crazy and agreed to put in a recommendation to have a professional who specializes in identifying Spectrum Disorders test Jacob.

Sure enough, test results confirmed what my heart had thought all these years. Jacob has a high functioning form of Autism Spectrum Disorder called Asperger's.

And while Jacob’s long diagnoses journey has finally come to end, my Autism Awareness and Acceptance Parenting Journey is just beginning. This is the first time I’m able to understand Spectrum Disorders not from just an educator’s viewpoint, but from a parenting viewpoint as well.

But, more on that coming in Part 2.

Mom-on-Mom Criticism

“I like to work. I enjoy being a working mom.”

A hush fell over the chatter and noises ceased. A teaspoon dropped onto a saucer and made a sonic boom as waves burst through the silence. My matter-of-fact tidbit was met with shocked expressions of gasping women at my table.

I was at a meeting with a group of local church moms in a new city, having recently moved. I was trying to make connections, find friends to have play dates with, and explore the community. I had seen an advertisement for a new mom’s group starting up, and thought it’d be a great place to start. So, I was the first in line to sign up. Flash forward to a month later, and there I was at my very first meeting.

I was easy to recognize. Several of the other moms knew one another, and had already formed friendships. I was the quiet newcomer, who was told she dropped her child at the wrong door, whose breakfast plate was piled high with carbs (no dieting for me!), and who took not 1, not 2, but 5 creamers in her coffee.

Anxiety floods my heart every time I do something that involves trying to socialize with unfamiliar people. Outsiders aren’t usually aware of this side of me (after all, aren't all teachers supposed to be great with meet-and-greets?), but the people who are closest to me know I severely struggle feeling comfortable in social situations. So, I was less than thrilled that small talk emerged as soon as I sat down.

“Where are you from? What a cute little country accent you have there! Why did you move here? What does your husband do? How many kids do you have?”

All these are legit, appropriate questions to ask, I admit, especially when you are trying to scout out new play-date potentials. But, couldn’t they give me just five minutes to shove chocolate donuts in my mouth and get some coffee in me?

So, we went in a circle and introduced ourselves. Then one of the leaders asked, “What do you enjoy most about being a stay-at-home mom?”

Several women answered, and when it was my turn, I replied, “I like being Jacob’s mom because he’s funny, witty, and it’s fun to see the different changes he goes through.”

The reply:

“That’s nice. I mean we all can agree that we like to see the stages our kids go through, but that wasn’t the question. What do you like best about staying home to raise him?”

You already read my response above. But just in case you somehow missed it (no offense taken, it happens to me all the time when I’m trying to read something and multitask), I will repeat myself.

I replied, “I like to work. I enjoy being a working mom.”

Stares, gasps, and blank looks.

I was confused. Why were they so surprised?

Finally the silence broke and the air fluttered with questions like:

“Who takes care of your kid when you work?”

“You leave him at a daycare? Aren’t you scared he’ll get sick?”

“Does your husband know you work? What does he think about it?”

"Oh you poor gal, you mean you have to work, right?

<<To answer their questions, yes, Jacob got put into a daycare starting at age 1, and no I wasn’t afraid he’d get sick. All babies develop their own immune systems in their own times. Yes, my husband Jason knew that I worked. I mean after all, he’d be kind of dumb to not realize that I got in the car every morning, at the same time he is about to leave, dressed up, carrying a teacher bag full of graded papers, and came home about eight hours later. Of course, he is supportive of my dreams in life. Like I’d marry a man who wasn’t?! And do I "have to" work? Well, no one is dragging me or forcing me to do it. I don't go in kicking and screaming. The bottom line is I WANT TO WORK.>>

I didn’t answer the women with the fun sarcastic humor I possess these days. I was very kind about it. I didn't even speak my stream of consciousness like I just did with you in the prior paragraph. The questions didn’t really bother me. After all, it was a world in which they were not accustomed. But I was quite surprised by the responses. What really got this country girl’s goat was the snide comments that started to come up during the rest of the meeting:

“I don’t see how you do it. I could never abandon my child just for a job.”

And

“No amount of money could beat the feeling of knowing that I raised my own children instead of letting strangers raise them.”

And

"Well, my husband and I think that our children are gifts from God and it's our jobs to take care of them instead of do what you do."

It was in these moments I realized that I was having my very first bitter dose of mom-on-mom criticism. Up until this point, I knew that moms had varying opinions - breastfeed vs formula; co-sleeping vs nightly own-bed-routine; etc. But that's all they ever were - just opinions. I hadn't met anyone who felt so strongly that they were willing to start verbally attacking others with their viewpoints. Until that moment.

The mom-on-mom criticism HAS TO STOP!

Whether a mom stays home with her children because it’s her life’s calling, or because it’s financially practical, it’s HER choice. And moms who go to work outside the house are not abandoning their children. They’re making decisions that are the best for them and their families.

I know countless moms over the generations who stayed at home, and their kids turned out just fine. I also know just as many moms who spent their lives working outside the home, and their children turned out well adjusted also.

Who are we to judge other mom’s decisions, especially when we do not know the circumstances?

I used to allow complete, opinionated strangers to make me feel guilty that I wanted to work. And then one day, when Jude was eight weeks old, something inside me snapped and I stopped caring what they thought. As I told a colleague earlier this year, "I love being a mom, but I'm a better mom when I work. That doesn't make me a bad mom. It makes me a self-aware mom."

For me personally, I love teaching! It’s my life’s calling that God has allowed me to polish over the years. While I’m still not perfect at it, I definitely realize that I’m gifted in that area. Sounds like I’m bragging, I know. I seriously don’t mean to; I’m just passionate about what I get to do in life! I get the unique opportunity to collaborate with talented professionals, implement creative ways to teach math, science, and reading, and touch hundreds of lives in the span of my career. Then I come home to my husband and two little boys with a new appreciation. Since I haven’t seen them all day, we like to share stories about our day around the dinner table. Jason and I share the loads of chores because we realize that we both have had a long day at work.

Working outside the house makes me a better mom.

It’s rare to figure out one’s purpose in life early on. Whether it’s to work outside the house in a profession you enjoy, or it’s staying at home, not missing a moment of watching your beautiful children reach the milestones in their lives, embrace it and do it with pride! That’s part of the beauty of motherhood - One size doesn't fit all and we can learn from one another!

Motherhood experiences are just as unique as the children we are raising.

My Word

With the new year just around the corner, I began reflecting back over 2017. It was a long, trying year for my family and me.

2017…

For me, it was the year I advocated for my children. I feel like I fought an endless, painful uphill battle to figure out what kinds of services and doctors they both needed.

It’s the year that my oldest, Jacob, went through his own mental and emotional hardship.  During the spring, I knew he’d need an IEP to be successful in school, so I began the long process to gather the data and make the necessary appointments for him.

It all paid off tremendously. He triumphed, and now has the right combination of medicines, correct diagnoses, OT, and counseling. The elementary school he attends is the right fit for his personality and he has been provided an amazing support team of both Regular Ed and Special Ed educators that meet his social, behavioral, and sensory needs.

Jude continued to take speech therapy classes (over 120 hours worth outside of what he gets in his IEP at preschool!) and made little progress. So concerning Jude, it was the year that I didn’t find any of the answers I sought - Why isn’t he able to talk (real words)? Why did he have seizures in the first place? What do I do when his regular toddler tantrums turn into sensory meltdowns that last over an hour? Will I ever be able to take him out in public to functions again without having to leave abruptly due to his behavior?

Will Jude be nonverbal forever?

Completely defeated on the Jude front. Thrilled and thankful on the Jacob front.

2017. So emotional. And EXHAUSTING.

Now, with 2017 behind me, I think of the direction I want 2018 to head. I stopped making New Year’s Resolutions years ago because they became too stressful to maintain. Even though I tried to make practical ones, I felt like a loser or failure when I didn’t quite meet them with 100% accuracy.

I heard on the radio that several people choose a statement or one word as their focus for the year ahead. I’ve never done this before and thought I’d give it a try.

If I had to choose a word that I think summed up my 2017, it would be “Survive”.

That's all I did. I barely survived day-to-day, in a sea of unanswered questions and severe loneliness.

I don’t want to just “survive” in 2018. I want a word that is opposite - one that emcompasses who I am on the inside, and who I aspire to be on the outside. So, I did what any good over-achievable, deep-thinking analyzer would, and I started making my word list. I made notes, Googled searched, and browsed scriptures on my quest to find the perfect word.

My word is MINDFUL.

According to good ol’ Webster, to be mindful is to “be aware of something”.

I want to be mindful of what others are going through. My friends deserve for me to be the type of friend that empathizes with them, and makes time for them... one who reaches out in love to help them get through life’s unpredictable moments. Strangers deserve a patient me who offers a helping hand instead of a judging stare. After all, we never truly know someone’s struggle or cross they bear. I really think that if we were all more mindful of how we treat others, we’d see drastic improvements of love, and a sense of togetherness in our nation.

My students deserve a mindful teacher. When I’m trying to control a roomful of youngsters, all with different interests, personalities, and struggles, my first instinct is to be firm. But what I have discovered in my decade of teaching is that I can be firm and set proper ground rules, but be fair at the same time. The students need to feel loved, and by developing quality relationships with my students, I’ll be able to take their circumstances and their feelings into consideration when I teach them. Being mindful of my students can make or break their love for school and feeling of acceptance.
Outwardly, I want to be mindful of my health, and of what I put into my body. I’ve never been one for dieting, nor do I think I need to lose weight. But I have started making healthier choices overall - less caffeine (with the exception of morning coffee) more water, less carbs and more vegetables, etc.

You know, the boring stuff that makes you want to roll your eyes when you listen to perfectly-sized women talk about their food plans.

But in all seriousness, being mindful of my body also means taking care of myself when I feel ill, sleeping well, and allocating time to do things that help me recharge.
Speaking of time, I want to be mindful of what I spend my time on. Even though I maintain the attitude that life should be all about balance, I greatly struggle with this. I spend more time on work than I should and don’t make time for myself. All work and no play makes Angela a bad mama, stressed-out professional, and unhappy human being.

Photography calms me down. When I look
through a lens, I get to focus solely on beauty,
and not on the stresses of life.

So I will definitely be mindful of how I spend my time next year!

Finally, l want to be prudent what I spend my money on. I already have everything I need in life as far a “stuff” goes. So why then did I just donate five large bags of clothes and clutter and seven bags of toys to the local Goodwill store? In this consumer-driven society, if I’m mindful on where my money goes, I can make wise investments that benefit my children in the future, become debt-free, and give charitably like never before.
I've already stopped surviving, and started becoming conscious of all the people and goings-on around me by being mindful. Mindful. Yep, that’s the perfect word for 2018!

Happy 2018 from my family to yours! Cheers to a fuller life!

Saying Goodbye

Tonight, on the eve of my husband’s favorite holiday, I’m saddened by the fact that we’re in the process of saying goodbye to his dad, Ted.

At the young age of only 43, it seems unfair to me that Jason should have to face his dad’s death. Especially when we see people decades older than Jason who still have their parents around. Why do some people get to live longer than others? Life doesn’t make sense.

Jason’s loving mom passed away from Crohn’s Disease when he was just sixteen. How would you feel being a young high-schooler entering adulthood without your mother? 

Jason's family circa 1986 . Jason was only 12.

Only now, to realize that saying goodbye to your father is an even harder door to close because he’s had a chance to watch you grow up, become successful in life, and raise children of your own.

Jason as a toddler. Dad tickle tackles are the best. (Circa 1977).

His dad is battling stage 4 lung cancer that metastasized to his brain.  I think the hardest part to get over is how late it was caught.

Ted had been going to the local VA hospital religiously over the past few years, never missing an appointment or test. The VA told him that everything was fine and sent him home every time. Eventually, as he felt worse, and as more ailments about his body didn’t make sense, he was encouraged by another doctor to go through UK for tests.

Ted went into the emergency room at UK, barely able to move or even function, in a state of confusion as to what could possibly be going wrong. UK discovered the cancer. We found out that if the VA had done the appropriate tests and scans, then they should have caught it in earlier stages.

Wow.

Say what you want about how wonderful the VA is. But before you speak your mind, stop and think about how you would feel to go in through an ER, only to realize that the hospital that vowed to take care of you misdiagnosed you for Lord only knows how long. And then, we you do get results back, it’s stage 4 cancer spread to your brain. All while you’re in excruciating, indescribable pain.

The point is that this veteran who served our country during the Vietnam War is facing such an abrupt end to his life. Whether you agree with our military or not, with the VA or not, no one should have to endure this kind of pain that Ted is going through. He’s in a Compassionate Care Center that is ran by Hospice. They’re keeping him as comfortable as they can as he “goes through the process”. 

That’s code for “passes away” in case you didn’t realize…

I always prided myself as someone who handles death fairly well overall (with the exception of my daughter). After all, I grew up where attending visitations (wakes) and funerals are a way of life. When someone you remotely know passes, you pay your respects to the family. It’s one of those etiquette rules that are as black and white to me as sending out thank-you cards. So, I generally have handled situations concerning death decently well.  Until now.

When I walked into the room to visit Ted, I lost it. My glasses clogged with tears, and my heart leaped into my throat. He was lying in bed, with his head back, and doing his best to just breathe. The type of cancer he has first takes over control of his body, which it already had. So, he could not move. The nurse told Jason that the last thing to go would be his hearing which was not gone yet. So, if he was awake, he’d be able to hear us. Meanwhile, Hospice’s job is to make him as comfortable as they can as he goes through the final stages of life.

Ted at our wedding. He always joked that he
looked like Kenny Rogers in a cheap suit.

 (On a side note, can I just add that the people who volunteer and work for Hospice should be given sainthood. I have always had a great deal of respect for them and for funeral home directors. They have the kindest people skills and are able to be pillars of strength in the most desperate times of grief. True saints.)

Back at Ted’s bedside, I sat down in a chair and tried to control my sobs. I wanted to be brave, but I didn’t know what to say. When I’m uncomfortable and nervous about something, I tend to try to use either humor or sarcasm as a Segway.  I started with a joke.

“Hi Ted. It’s Angela, your favorite daughter-in-law. Some people will do anything for attention, won’t they?” I chuckled, imagining his wide smile and bantering nature.

(And for the record, he loves both daughter-in-laws. But that was one of our jokes. He would say it to both of us when he visited.)

I started rambling about my new school and my students. I talked about how much his own grand kids had grown, how Jacob plays the piano now, and how Jason and I have to tag team to deal with Jude’s craziness. I started recalling all the stories I remember about Jason when he was a little boy. I even told Ted that Jason liked to eat some of my chocolate that Ted had given me as gifts over the years. It felt good to tell on Jason, and I know that inside, Ted was smiling. 

Ted and his long time companion Margie at our wedding in 2004.

I talked, and talked, for probably half an hour nonstop.  As fast as I could, barely pausing, until I ran out of wind, and of topics. I realized that if I didn’t talk, I was going to lose it. Talking was my way of getting through it and saying my goodbyes. He always had taken an interest in my life, especially about how my teaching career was going. He asked Jason about it every time they talked. He was a good listener too.

 I was choking back more tears trying desperately not to lose it. I mean, what do you say to someone you love going through stage 4 cancer, and only has a matter of weeks, if not days?

Ted with Jacob (top) and Jude (bottom)

He’ll never get to go home again. To drive his Harley. To jam on the guitar with Jason and sing. To hear Jacob tell stories. To take us to a Mexican restaurant so he can deliberately pronounce his order incorrectly just for a good laugh. He’ll never hold Jude again or give us hugs letting us know he loves us.

But, I knew the conversation had to eventually cease.  And as my mind began slowly down, blank thoughts stirred a whirlwind in my head. I sighed, tucked him in a little more to make sure he was warm, and sat back down in the chair quietly for a few moments holding his arm. 

Regaining composure and wiping tears away, in that next moment of silence, my broken heart cracked even deeper as I uttered the words, “Goodbye Ted. I love you. Thank you for raising such a wonderful son. You and Faye did a great job with him. And thank you for welcoming me instantly into your family almost 14 years ago. You’ll always be my favorite father-in-law.”