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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.

A Letter I Can’t Send: You And Me

You have broken my heart;

you have cut me to the bone;

you have stabbed me in the back;

you have endangered my children;

you have stolen from me;

you have threatened to kill me and it seems every time we talk you spew out nothing but lies.

I failed you. As the person who brought you into this world, it was my convoluted job to make you appropriate for society.

If you had been an only child, would it have been different? If you had been an only child, would I have given you more leeway so I did not sacrifice your siblings humiliation, safety and discontent?

We moved for you. It was the area, the neighborhood, the school, the doctors. I did everything and gave all in hope that the problem wasn’t really you.

Doctors, therapists, counselors, hospitals; things a mother should never have to say about her child, I said.

In the end, I failed you.

For many years, I was a mighty warrior set out to ensure your health and happiness, but you broke my spirit and I gave up. I want so badly to let you in, but the price is so high and I am emotionally bankrupt.

You deserved a stronger mother, one who could stay in the fight, one who could be more understanding, one who could battle for more than 19 years. I am so sorry you ended up with me, who tried to make you fit in a cookie-cutter mold. I still have no clue what kind of mom could have helped you.

It wasn’t me.

I battled uphill to mend my broken life while trying to protect yours. The spiraling, all-consuming, soul-sucking, constantly being kicked and punched, that was all beyond me.

I’m sorry I am so broken and weak that I can’t afford to be hurt again. Everyone in your world has disconnected over the years in the simple and often subconscious act of self-preservation. But in everyone’s life, there should be at least one constant, one person you know will always be there. You don’t even have that.

I hurt you.

I insulted you.

I embarrassed you.

I punished you.

I hospitalized you.

I let you down.

I lied to you.

I threatened you.

I had you arrested.

I closed my door to you.

I laughed at you.

I walked away….

I didn’t ever deserve you, and you certainly didn’t deserve me.

My Daughter Is Angry

My daughter has been waiting over nine months for a liver transplant.

And my daughter is angry.

She’s angry at God. In her eyes, He’s the one who created her with this disease, it’s His fault.

She’s angry with me. I’m her mom. I am the fixer of boo-boos. Yet with this, I am powerless, and that frustrates her.

She’s angry with the transplant coordinator; afraid that she’s completely forgotten about her.

She’s angry with the organ donors who, as terrible as this is, haven’t died yet. She doesn’t completely comprehend that a tragedy has to happen to a family in order to have her transplant. She just knows that a donor has the liver she needs.

I try to soothe her anger, but I’m not very successful.

Maybe because I am, well, not angry, but frustrated too.