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Is This Living? Because It Feels Like Waiting

Addiction isn’t called a “family disease for nothing.” The family of an addict is just as impacted as the addict.

This is her story of her son’s addiction:


My child has become an addict and loving my child is so very hard. I’m trying to find my happy as I learn to deal with his addiction.

With the overload of health issues around here, along with the common “life stuff,”  I willing took a break from blogging after the last attacks from trolls; trolls who don’t know me, know my child, know my life, know my situation, and will never understand my life or my thoughts.

Simply: I took a break because I wasn’t strong enough to keep going,

Three blogs, five days a week, and two little freelance writing gigs with groups have kept me tied to the computer dumping out my odd take on humor, insane fake advice, and occasional a vaguely serious topic.

I have decided I will blog, on my blog, and the trolls will not, cannot affect me. I won’t allow them that kind of power. I have to share this story because as odd or awful as this is, I can’t believe I am the only one. Sometimes knowing you aren’t alone, can make a differences on your life. It has in mine, just like everyone here at Band Back Together.

For a very long time, I’ve been living while waiting for the other shoe to drop.

I call it “living” but it’s really just existing –  when I can muster the strength to push the elephant in the room to the back of my mind. This horrible addiction elephant.

an addiction elephant in the room

When someone you love makes horrible choices, you can still love your addict child, but you also have to make a choice.

I made a choice to love from a distance to allow my son to deal with his addiction on his own time, allow that person to do things at their will, wherever they wanted. The condition was: I would not support that person, their activities: not emotionally and definitely not financially.

Of course that comes with a higher emotional consequence for me, a soul-eating, mind -boggling, hellish existence.

Torn when the phone doesn’t ring, furious, emotional and torn when it does. There is no happy medium, is no mutual enjoyment of life, it’s an inner ring of hell.

loving an addict family

It’s odd how the human brain learns to process things so completely outrageous and unacceptable if they happen often enough; the brain removes logic to save the heart. The brain knows if one more little piece of your soul falls to the floor, you will collapse and finally fade away.

Things you never thought you would hear, become expected. Disappointing? Of course. Scary? Almost every time.  Seeing red with anger? A lot. Somehow, your brain allows it to roll off your back.

loving an addict through childhood

loving an addict through childhood

You can’t fix it, they don’t want to be fixed, no matter how absolutely insane and ludicrous the situation, you cannot even point out how completely illogical the situation is, let alone offer solutions. There are no less than 683 million reasons why all of your ideas are completely stupid.

You learn to focus not on the highs, not on the lows. Not the shocking news, but only that you love that person, your child, who just happens to be an addict.

You make sure whatever you say won’t offend them, or their choices, and you make double damn sure that person knows you love them, you love them deeply, you love them completely, you love them from your soul.  You only want the best for them, safety for them, happiness for them.

No one really has the same idea of happiness.

it took me 43 years to realize that.

Another thing I learned; just because it’s ” the normal” thing that you’d make anyone happy, happy and delighted and feeling so very lucky, this can seem like hell on earth to someone with a different view of happy. So who am I to attempt to enforce my idea of happy on anyone? Simply put, I am no one. I am just a daughter, a wife, a sister, a mother, an aunt, a friend.

I am made up as we all our of a unique cocktail of our childhoods, our teachers, our elders, our peers, our life lessons, co-workers, books, and shows we have seen. Just a big casserole of a human being trying to find “happy.”  When I achieved happiness, I assumed it would be wonderful – more than wonderful – and that, in turn, everyone else would become happy. Everyone would see how hard work brings happy, how loving each other brings happy, how walking the right road, singing your own song, and smiling would obviously land you in happiness.

The past 20 years, I tried to shove people into the happy, I tried to drag them into happy, push them in, beg them, lure them, slide shows of happy, handmade cards, long emails, song dedications, heartfelt talks, and hugs, I could surely get them to happy. Once they saw happy they would be like “duh, I want to be happy too!”

I was wrong. Their happy was so different than mine so I had to accept they would not be in my happy with me. Maybe they were taking a different route, and we would meet up in happy. Maybe their happy just meant more pit stops, more experiences, different criteria, maybe their happy would never lead to the same location as my happy. What would I do then?

image of addict son as he gets older

Their happy could be really good for them, so I will work on being happy for their happy.

Little crumbles of your heart fall as your soul tears.

In the end, all you really want is for them to be happy. You convince yourself not to be such as narrow-minded selfish ass who demands everyone’s happiness is within arms reach of your happiness.  We are not all alike, and really, what a boring world that would be. Keep telling yourself this as it makes it easier to persevere your heart, mind, and soul. Besides, it makes them happy that you are happy for them. It’s painful but it’s good for them and for the relationship.

Then the call comes, not a happy call, you are prepared because you know when this disease spins ’round, the calls come in two forms and two forms ONLY.

One, the world’s best thing ever, everything is amazing.

The next call, though, could be in a week, a month, a day, or within several minutes: the world is ending, there is no hope, no escape.

There’s not a single thing you can do to make it better. So you listen, try not to cry, remembering to love, offer helpful solutions, offer to make arrangements or calls, you do what you can and it’s usually for nothing. It rarely works out, but you make damn sure they know you love them so much you can’t breathe when they are in pain.

The calls – you see the caller ID – it’s a number from a state that you don’t know, but you do know who is on the other end, you never know the type of call, only that it’s from them. So you take deep breaths and you prepare to play the roulette game of their life. What kind of call you don’t know it could be: an incredibly fantastic words of grandeur.

Or the call can be gut-wrenching, heart-breaking, sobbing pleads for help.

You don’t know, because you can’t know but you answer the phone, inviting the roller-coaster of love and hate and pain into your world.

Nothing surprises you now.

As long as it’s their voice on the end, you are prepared, it’s now become common practice. You’ve learned to stop yelling, begging, urging, and learned to focus on conveying the fact that you love the elephant in the room. You love that elephant when your eyes open in the morning, and you love that elephant when your eyes close at night without a tear running down your cheek. No one sees your tear.

No one hears your cry and no one, no one can understand why this elephant is needed, deeply; it has become comforting.

Then as you are in your happiness on the back porch wind blowing you sit with your little family, cross-legged looking at your happiness, eating sandwiches, and thinking how peaceful and loving and happy this all is.

The phone rings.

The addiction elephant steps outside. The elephant sits on your chest, takes your breath, and overcomes you. Sometimes, when that elephant climbs on you, you compartmentalize you soul, your heart, and your brain as this allows you to attempt to speak in a sane, calm, tone, using gentle words, no blame, just love.

The call ends, with mutual ” I love you’s.”

The happiness is now gone for them as they are faced with a very adult matter that can’t be “worked away.”

You don’t remember the rest of the happy picnic: the people in your happiness with you do not have a conversation about it. You move on as you do after every call. But something is wrong, very wrong

You can’t tell anyone, yet you don’t cry, you don’t sob, you don’t fall to the floor, you don’t steal a car to get to the addiction elephant to hold them.

What the hell is wrong with you?

Why are you not responding like a human?

Why aren’t you happy?

Why not like the other times?

You haven’t fallen apart yet.

Will you fall apart?

Will this change your ability to move forward?

You know that If this person comes back, can you handle it?

Can the happy team handle it?  What will be the cost of the elephant if you don’t?

What will be the cost of happy if you do?

I know the other shoe will fall, there’s just no way to process this without dying more inside. Maybe I am out of a soul, a heart, tears. Maybe I have been cried out, maybe I am stronger, maybe my brain is trying to protect me.

I am very much not okay, mostly because I feel okay, there is no way that I should feel okay.

Why am I not shaking, sitting in the shower crying, sobbing, and vomiting like I’ve done before when the bad news comes?

I’m not even shaking.

The shoe will drop, I hope, I beg, I have the strength, the knowledge, the wisdom, the compassion, the ability, the life experience, balanced with the brain, the heart and soul, to take this journey.

To share my happy, to understand their happy, to make a new happy, but most of all, to convey they undying, deepest of love and the basic humanity to make their happy the best happy I can.

Please find your happy; let everyone you know how much you love them – no matter what what makes them happy.

Lucy Clare

Since 2003, the March of Dimes has led Prematurity Awareness Month activities in November as part of its Prematurity Campaign.

The goals of the campaign are to reduce rates of premature birth in the United States and raise awareness of this very serious problem.

Please, we encourage you to to submit your own stories of prematurity with The Band.

Four years ago I would not have paid attention to an event like Prematurity Awareness Month and I likely would not have even known about the work of the March of Dimes. Today I am proud to be a supporter of the March of Dimes and their important work.

On March 8, 2007, my niece, Lucy Clare entered this world after my brother, Jonathan and sister-in-law, Mary, made the difficult decision to have an emergency c-section at 25 weeks gestation. In the weeks leading up to Lucy’s arrival, Jonathan and Mary knew that there was a chance Lucy would have to arrive early. She wasn’t growing and the doctors said that if she didn’t reach 500 grams (1.1 pounds) there would be very little they could do.

We all held our breath as Mary went to each ultra-sound appointment, hoping that this baby (gender unknown to all but them) would grow – just a little bit more, just a few more grams.  They were briefed by the ob-gyn on what outcomes to expect if she was born at 32, 30 or 28 weeks.

A few weeks prior to Lucy’s birth, they were given a tour of the NICU so that they would be prepared for what they may encounter.  At their last appointment, on March 8, they were told they had to make the difficult decision – wait another week and risk that she wouldn’t survive in utero or deliver that day knowing that the hospital had never had a baby that small survive.

Wanting to just give Lucy a chance, they opted for the c-section.

Lucy was a micro-preemie in every sense of the word. She weighed only 400 grams (14 ounces) and was just 10 inches in length.  At her lowest, she dropped down to 290 grams.  She was given surfactant therapy – its research was funded by the March of Dimes – for her lungs.

She breathed with the help of a ventilator for five weeks before being switched to CPAP for two months and then on nasal cannula until she was discharged.  Lucy’s time in the hospital was filled with ups and downs – it often seemed like one step forward and two steps back.  She faced many of the challenges that preemies in the NICU face: infection, retinopathy, the struggle to breathe on her own, a heart condition and feeding challenges.

Lucy spent 182 days in the hospital – six long months – before she joined her family at home.

Today Lucy is a happy, funny, easy-going 3 ½ year old who adores her big sister Stella and is starting to enjoy her baby sister Mallory. She loves books, colouring, watching Yo Gabba Gabba and dancing. But she still faces many challenges:  she takes medication for pulmonary hypertension, she relies on a feeding tube for 100% of her nutrition and she has deteriorating eyesight.  She has therapy appointments with a feeding specialist, physiotherapist, and attends weekly sensory motor sessions.

The work that the March of Dimes does through education, Prematurity Awareness Month, March for Babies and so much more, is crucial to helping all babies have a healthy start.  Our family considers itself lucky that Lucy is here today and we want to do everything we can do to raise awareness for prematurity-related issues.  It’s our chance to give back just a little bit.

Visit to find out how you can help!

Sweeter Than Music

Last week, my daughter Anna was on the radio! She was invited by Angie Evans to do the Triple Play Takeover on WCFX. She was able to request three songs. She picked “Baby” by Justin Bieber (of course), “Fifteen” by Taylor Swift and “King of Anything” by Sara Bareilles. She also was able to describe a prize for a giveaway, answer the phones, and do the weather. She even got to talk with Angie on air, and tell everyone a little bit about herself.

Of course she was a little bit nervous beforehand, but I think I was even more nervous for her. I didn’t need to be, though. She was a natural! She joked around, and even shared some entertainment gossip she had just learned!

Years ago, I never would have imagined this would have happened. You see, Anna’s been receiving speech therapy since she was a little over a year old. When she was a preschooler, I was the only one who understood what she was saying. I was constantly having to act as an interpreter. Speaking clearly and slowly enough for others to understand has always been a challenge for her.

Yet there she was, on the radio, speaking clearly and totally coming out of her shell. Doing the Triple Play Takeover was so much more than having fun on the radio for 30 whole minutes.

Instead, it was a huge milestone that she was finally able to achieve

Battle Of Wills

She had done it a thousand times before.

When Emma was younger, she would carefully and slowly roll her body down the two steps of our sunken living room, from the foyer of our apartment. But as she got older, she evolved into scooting down on her bottom, with some semblance of graded control. It was a sight to see. Her four foot, seventy-five pound, lanky frame, propelled itself by pushing off the floor with the back of her hands while simultaneously pumping her legs, in what appeared to me as a painfully uncomfortable movement, much like a caterpillar.

She never did take to the hand splints that were custom-made for her when she was a little girl, to keep her wrists straight, and to prevent the contractures, that partly defined her life. Even as a small child, she was not going to be restrained and somehow always managed to remove the limiting splints–using her teeth to pull apart the velcro. A veritable Houdini.

I marveled at her determination to get to where she wanted to go, with all of her physical limitations, as she would lower her diapered tush, first one step and then the other, bouncing and closing her eyes in anticipation of the not so soft landing.

I would spot her from the corner of my eye, as she would rhythmically make her way to the couch where I would be sitting, attempting to go unnoticed as I would to try to sneak in yet another episode of the Housewives of NY, or Orange County, or Beverly Hills or Atlanta—my one guilty pleasure. Caught in the act, Emma would determinedly pause at my feet, reach for the remote control sitting next to me on the couch, place it, matter of factly, into my hand, and, without skipping a beat, turn her head to look at the television. And even though I always knew how this story ended, I would make an unenthusiastic effort at redirecting her from her goal, by placing the remote control behind my back.

There was no dissuading this persistent, then teenager. Survival was the name of the game for Emma—from the day she was born. With every obstacle that presented itself to her, she would somehow, with ingenuity, find a way of overcoming it, by resorting to the limited skills she had learned over the years.

Precisely the reason she learned to pull herself up on the couch by planting her forearms and elbows into the cushion of the couch and with nothing less than sheer superhuman strength, throw her body up, while pivoting it 180 degrees, so that she could land with aplomb, on her padded behind next to me. The next movement involved her reaching for the remote control behind my back, retrieving it, and triumphantly, and with a deliberate gesture, placing it in my hand once again, so that I could comply with her wordless command, to change the channel to Sesame Street.

It was an impressive battle of wills, and one that I invariably lost—secretly happy that I did.

Her Diagnosis

Thirteen years ago this past July our lives changed forever.

We had already suspected that something was not quite right with Anna.  She had stopped nursing after a few days.  I assumed that it was my fault, and since I was afraid that she was hungry, switched to formula and bottle feeding.  She did well with that for a few days, then it seemed like a challenge just to get her to drink an ounce.  We called the nurses on the maternity floor where she was born, and we were reassured that she probably just had gas and an upset stomach because of the switch and not to worry.

I was still worried, but we had our first post-natal pediatrician appointment the next day (July 25), so I knew we would get answers then.

In the mean time, I received a phone call from someone from the state of Michigan.  I’m not sure, my memories of that are vague.  I remember that she told me that Anna had potentially tested positive for one of the disorders in the newborn screening test, and we should go to the hospital to get blood drawn, to confirm it. I was concerned, but was still focused on our doctor’s visit.

When we went to see Dr. Simms, her pediatrician at the time, as soon as we were called back to the exam room, she greeted me, looked Anna over, then excused herself to get one of the other doctors. I guess she wasn’t sure how I would react to what she would tell me next.  When they returned, she explained that Anna had tested positive for maple syrup urine disease (MSUD*), it was very serious, and she was very sick. The only specialist in the state who saw patients was located at University of Michigan, and we were expected down there, and we need to leave as soon as possible.  I remember that her southern accent was soothing, and the other doctor gently held my shoulders and guided me to a chair, but my mind was in a fog.  I didn’t understand…. Anna was born healthy.  Both of her Apgar scores were 9.  That meant we were supposed to live happily ever after.



At the time Lance was working at Hafer Hardware, and it was lunch time. Dr. Simms allowed me to use the phone in her office to call him. I called the store, but he had just left for lunch.  And of course, this was before we had cell phones. I’m sure it was only a few minutes before he finally called back, but it seemed like an eternity.  After reaching him, Anna and I headed home to pack before we headed to Ann Arbor.

On the drive to U of M I poured over my “What to Expect” book.

MSUD wasn’t in there. I had heard of it, but only as an ailment of a serial killer in a crime novel I had read, not as a real disease.

When we got to the ER at U of M, Dr. Allen, a neurologist who treated patients with MSUD, and a gaggle of med students crowded into the small room. I remember that he removed Anna’s diaper and passed it around for the students to smell.  He then took a swab of her earwax for them to smell.  We were completely flabbergasted… what did he think he was doing?

We didn’t realize he was doing it to show the students that both smelled like they had been smothered in Aunt Jemima’s.

You see, there were signs that Anna has MSUD, but we never picked up on them.  She had a very high pitched shrill cry, but we joked that she’d sing opera someday.  By the time she was 3 days old, she tensed her muscles so tightly she rolled herself over.  We bragged that we had a wonder baby who was months ahead developmentally. Her diaper smelled sweet and syrupy.  We chalked it up to being new parents, and being so in love we thought her dirty diapers smelled good. And what we thought was fussiness with the bottle and me not being confident in nursing was actually because her brain had swelled so much that she lost the suck and swallow reflex.

By the time we were in PICU, she had an IV in her scalp, because she was so dehydrated that that’s the only blood vessel they could use.  She had an NG tube giving her nutrition.  She was hooked up to heart monitors and pulse-ox monitors.  She looked so tiny and helpless there in the bed. We had never felt so helpless as parents as we did then.  That day is one of the few times I’ve seen my husband break down and sob.

What information we were given about MSUD over the past few days was overwhelming.  Most of the official definitions included two very frightening likely outcomes: mental retardation and death.  The prospect of having a child with a restricted low protein diet was daunting too.  Would we need to become vegetarians, too?  If we wanted to eat meat, would we need to hide it from her, making late night drive-thru runs to satisfy our cravings? 

Those fears seem so trivial now, but they were so real to us then.

Over the next two weeks, Anna got stronger.

After she got out of the PICU, she was moved to a regular room.  After she regained some weight and was able to take feedings by bottle we were able to come home.  She was sent home with the NG tube, as she was still taking about a quarter of her formula that way.  Shortly after we got home from the hospital she grabbed the NG tube and pulled it out, flinging stomach acid all over me.  I should have known then that it would serve as foreshadowing for how the next thirteen years would go!

Thankfully, we were able to remove the tube after a week.

As I think back to those days, I also look ahead to what faces us.  When it comes time for her [liver] transplant, I know that we will face long days in the hospital full of tears, hope, fear, and prayers.  The big difference will be that this time, we will be filled with hope.

Hope that although we will be entering a new chapter full of uncertainty, we will be free of the fear that MSUD has caused over the past thirteen years.

*Maple syrup urine disease is an inborn error of metabolism.

Apple, Tree, You Know The Drill

Watching your children struggle is hard on a parent.

This is her story:

I sometimes say that I won the craptastic mental health lottery. I’ve had my share of minor struggles. My children, on the other hand, have dealt with much more than I did.

My daughter is twelve, and has just returned home on Wednesday from her second hospital stay in four months. I am confident really believe hope like hell that we’ve gotten to the heart of identifying her disorder so we can do the right things to treat it. She’s smart and creative and beautiful, and I want everyone to know that about her, not focus on her anxiety or her awkwardness or her peculiar outbursts.

My nine year old son was the one who pulled us kicking and screaming into the world of mood disorders. I’ve done lots reading (books, websites, you name it) about kids like him and the myriad of Disorders (the conditions are often too big to be suited to a lowercase “d”) that could have caused his behavior. Always one to resist a label, Hoss does not fit neatly into any of the diagnoses that generally cause the behaviors as they manifested themselves in him.  Welcome to “mood disorder- Not Otherwise Specified.”

He’s witty and brilliant and is such a computer whiz that I could see him as the next Bill Gates.

My baby boy, who is seven years old and therefore long past being a baby, is the hardest to pin down. He may be quirky. He may be something more serious. His stubborn streak and need for routine may not be OCD or Aspergers, but no one has ruled it out yet either. Little Joe, he of the unbelievable memory and soothing routines, is still a wild card.

Most mental illnesses have some genetic link, although there are always families with no history who  have a child with some issues rising to the surface. What would be the odds of having not one, not two, but three kids with these disorders?

Like I said, maybe I just won the lottery.