Fourteen and a half years ago, 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, but 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 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 postnatal pediatrician appointment the next day (July 25), so I knew we would get answers then.
In the meantime, 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 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. T
he only specialist in the state who saw patients was located at University of Michigan: we were expected down there and we needed 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 had 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 it was 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’d 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 as well. 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 14 years.
Just before her adoption, we were asked to also foster her little sister, who was about to be born.
I was hesitant. I didn’t want to take on a child who had a high chance of returning to her birth parents. But I couldn’t let my little girl’s sister go to strangers, so we said yes.
As time passed, the birth parents weren’t doing their part, and I felt more and more like she was my baby, and I would have her forever.
I should have been happy. I had everything I’d ever wanted!
The money the state paid us to take care of foster children made it possible for me to be home with those two pretty little girls all day. I had always wanted to be a stay-at-home-mom. And now I had not one, but two children to take care of! The girls were happy, and the best sound in the world was their laughter as they played together.
I wish I could say my husband felt the same way.
He was resentful of that baby as soon as she entered our home.
He hated all the time I was spending with her, instead of him.
He was jealous.
Of an infant.
The baby had learned to stand. She was so proud of herself! There was no stopping her now!
From the time she was a newborn, she had always hated going to sleep, and getting her to settle down for bed was a long, drawn-out process. But with her newly developed skill of standing, it became much worse. I would lay her down, she would stand up. I would put her down again, she would stand right back up.
One night, he had enough. “I”ll make her learn she has to lay down when it’s bedtime,” he said.
He came into the girls’ bedroom with me when I put her to bed.
I laid her down in her crib, telling her goodnight, same as I always did. She stood up, and he sprayed her right in the face with the water bottle we used on the cats when they were doing something wrong. I was horrified!
But what was I supposed to do? He was my husband, and I was afraid to question him.
The battle of wills between a man in his 40’s and a less-than-year-old baby went on for a while. I would lay her down, she would stand up, he would spray her in the face.
Finally, he pushed me too far. She was soaking wet, dripping on her sheets. I knew even if she did go to sleep, she would end up getting sick from trying to sleep in her wet clothes and bed. I took a chance and said, “That’s enough!”
Amazingly, he walked out the door without saying a word.
I took her out of her bed, pulled her wet clothes off of her, dried her with her little hooded towel, then put clean, dry pajamas on her. Then I changed the bedding in her crib and started the bedtime process again.
When I walked out of the bedroom, she was back to standing in the crib. I walked out to the living room where he was watching TV. I looked him dead in the eye and said, “Your way didn’t work, and you’re never doing that again.”
He didn’t argue, and he never tried that stunt again.
I think he figured out that there was only so far he could push me when it came to the children.
He could belittle me and mistreat me all he wanted, but don’t mess with the Mama Grizzly Bear.
I’m R and I’m transgender. I’m also the youngest kid in my family. I’m quiet, and my older sibling, L, is not. We are both a lot alike and very different.
I didn’t have a name for how I felt; I just knew I was really unhappy the older I got. I hated the changes puberty was causing. I wanted it to stop. But, I’m quiet and I didn’t say anything. I doubled down on skirts, on leggings, on purses, whatever I could do to be more girly. My mom loved it, so I kept doing it, but I grew more unhappy. I lied about my favorite anime characters, saying I liked girl characters when I was drawn to male characters.
And then, a couple years into this struggle, when I finally had a name for who I was – I am transgender.
L came out to my parents as being transgender and I felt screwed over.
If I disclosed now, my parents would think I was copying him.
So, I dressed even more girly and grew more depressed.
L was immediately accepted. His entire wardrobe of girl’s clothes went to me or were tossed. He got boys underwear, boys jeans, everything a geeky little guy could ask for. I still hammed it up, letting my mom put makeup on me, do my hair, whatever I could do to embrace being female,
It was awful.
I did it anyway, lasting a year and a half into L’s social transition before my mom helped break through my barrier. She guessed, but unlike L’s instant transition, my mom wanted made me to wait an agonizing six months to come out, even though I, too, got a new wardrobe and haircuts that grew increasingly short.
I came out to my extended family as gay first.
It wasn’t quite right, the gay label as a girl, but it let me be out, partially, at least.
Trying to figure out who I was and my sexuality at the same time was torture. I told myself that I must like girls in that way, but I didn’t.
I want someone to partner with, but I was also figuring out that I was asexual. The asexual part was the easiest. I really needed an easy thing at that point.
I tore myself up over being trans, being gay. I felt so alone.
I was more depressed than ever. I still got called by my girl name and it made me sick each time I heard it and saw it.
My mom saw the despair, and four months after coming out to her, I took my new name and came out to my whole family and friends.
My brother and I never said a word to each other during the years we were suffering and trying to figure out what was wrong. We share a room, and both of us are blown away that each night for years we lay in our beds and agonized silently. If one of us would have taken the leap and shared, we could have suffered less.
We knew our parents were LGBT allies and supported one of my mom’s students who was also transgender.
We were scared.
Scared to say the words aloud to ourselves. To each other. To our parents. To the world.
We saw the agony that my mom’s student was in, that moving hours away to an LGBT friendly place was the only way to live openly.
That’s why trans visibility is so important.
Acceptance is essential.
My brother L and I are transgender. We are at peace with that knowledge because we are accepted for who we are. We are supported. We will, in the future, medically transition.
We are the lucky ones.
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.
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.
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.
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?
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.
Is Mommy coming back?”
He was not quite six years old when he asked me that question about our mother. I didn’t know the answer then. I was only nine. I knew he needed me. I knew he was sad and worried and really, really scared. I told him the first thing that came to mind.
“Yes. She’ll be back.”
It took a few years, and in that time, he and I grew very close. I helped him with his homework, did his laundry, and beat up his bullies. I tucked him in at night, made his grilled cheese sandwiches with ketchup, and wiped away his tears.
Now, he’s thirty and I’m thirty-four. We’re both parents. Both have been divorced. Both wounded. But I will always be the big sister.
His fatigues are packed for the war zone, again: for the fourth time. Fuck.
I left him a message. And then he left me one. And then finally today, we talked.
“Am I coming home, Sis?”
“Yes. Yes, you are coming home.”
“With my tags on my toes?”
“NO. Not with your tags on your toes. You’re coming home to kiss your son.”
“Take care of my wife & son, Sis.”
“You’re the best sister and mom I’ve ever had. I love you.”
(I catch my breath.) “Watch your ass, baby boy. I love you too.”
Oh dear God, please watch over my baby brother. Keep this 6’4″ soldier safe and bring him home where he is loved most: where he has a son who needs his father; a wife who needs her husband and a sister who wants to keep a promise that he is coming home safely.