One of those things that I always figured I’d do when I was bored and had scads of free time, which, you know, I’m just swimming in with my three kids and houseful of pets, was to learn to decorate cakes.
I somehow forgot when I was hatching my Great Plan, that I have absolutely no eye for detail and have about as much fine motor skill as my poo-eating dog. But yes, in my head, I was going to be the next star baker.
Just like I was going to be the next Rembrandt, Britney Spears, and uh, Martha Stewart, because all of those plans were SO SUCCESSFUL.
But when I saw that I could buy something that fit my “I never got an EZ Bake Oven” fix AND test my prowess as a Master Cake Baker, I was all over it. (if you have no idea what I’m talking about, go here)(then come back)(and you should know that I do love me some Pioneer Woman)
Really, I didn’t see how I could go wrong. Except that a 29-year-old woman with a full kitchen of her own had bought a toy cake bakery. That seems all kinds of wrong when you put it THAT way.
But let’s not dwell on the negative here, Internet!
Microwaving, AWWW YEAH!
Now, see, THAT is the kind of cooking I can do. Short and sweet. None of those wonky STEPS that I can misconstrue or FORGET because I’ve accidentally wandered off to see what happens when I put the cat in a box.
While I don’t know why someone would want a pamphlet of “DUFF” inside a box clearly marketed for children, I suppose that is neither here nor there. He seems a little, uh, CREEPY and vapid, doesn’t he? (I know he’s on the Ace of Cakes)
No accounting for taste, I guess. Which is why you read my blog.
While shit, man, that’s waaaay too many instructions. I don’t need to read instructions. Those are for sissies.
Why, isn’t that perfectly darling? A wee cake decorating set! I can’t figure out what most of the doo-hickies are for, but, you know, I AM READY TO LEARN. Providing I don’t have to READ WORDS and FOLLOW INSTRUCTIONS.
Well, THAT is fancy-pants. It’s either a toothbrush holder…or a sex toy. Kind of advanced for children.
Huh.
If parents can get outraged by the Fresh Beat Band, why not providing our children SEX TOYS!!1!! OH THE HUMANITY!!
Guess you know what I’ll wander off to do.
….
BRUSH MY TEETH, YOU PERVERTS.
Here we go, with some mother-humping yellow cake. That’s wicked yellow and I stirred it approximately 4.3 times before it was mixed thoroughly. Because that is the way I make cake, bitches.
Well, now, here I have expertly poured two thimbles of cake into the microwave pan where I shall bake it for exactly 30 seconds. How can this be bad?
(cue ominous music)
Well. That…uh, looks appetizing. It’s really a shame that I can’t make this blog post scratch and sniff, because this smells like burning hair.
nom nom nom SOYLENT GREEN nom nom nom.
The Soylent Green patties are, I should note, about the size that one might expect to feed a wee field mouse. I am holding my lens cap up for perspective.
Cue the old joke… “the food was so bad….And there was so little of it!”
In an effort to cover up the horrible yellow color of the cake, I have chosen blue as my fondant color. Note my expert mixing technique. I should probably get a medal from the Mixing Olympics.
This fondant looks like a pile of, well, blue…poo.
I’m certain that I can roll it out and make it look better.
Oh. Well. Um.
Maybe I should have read the directions.
I know, I’ll read them now!
Okay, that looks NOTHING like what I’ve got.
Uh. Well. I KNOW. NEXT STEP.
Icing. I can cover this with icing. THAT’S ALL. I bet it’ll look as good as new in NO TIME.
That looks a lot like we’re about to artificially inseminate something. WICKED.
My pre-iced cake on it’s pretty little platform. Doesn’t it look like, well, someone with no thumbs decorated it?
Scratch that. People without thumbs could do better. BLIND people without thumbs could do better.
Aunt Becky’s Weapon of Mass Destruction. The ICING GUN. Prepare to meet your MAKER.
Uh. WHOOPS.
I genuinely do not know what I did wrong here. It appears as though my icing gun misfired.
I, um, I swear guys, this NEVER happens to me.
(cue inappropriate jokes)
UGLY CAKE, PREPARE TO MEET YOUR MAKER, uh, PART II.
Awww! Lookit my whimsical, drippy heart! With some balls thrown on it for good measure. Because everything is made better with colorful balls and icing.
(go ahead)(make your jokes, people)
Ladies and Gentlemen, this is the reason that you do not want me to cook when you come to my house. THIS is the reason that I order takeout.
Because while this appears to have been done for comedic value, it actually was not. This was genuinely the best that I could do.
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.
Right?
Right???
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.
His name is John; hers is Yvonne. He is 76 and she is 74. They dated all through high school. Then they broke up and married other people, had kids and grandkids, and all was well.
Then John’s wife got cancer – ovarian or cervical – either way, doesn’t matter. He took care of her, always believing he could do more. Then she died.
John got on with his life. He was sad, but dealing.
One day, John’s son looked up Yvonne and found out she lived only 30 minutes away. She was married to someone and had kids and grandkids and even a great-grandkid.
Some time later, John’s son showed him the obituaries. Yvonne’s husband had passed. Cancer. John went to pay his respects. After all, he and Yvonne had once dated. They talked a bit and promised to keep in touch.
John and Yvonne were married two years later.
They have been married about six years now.
Two years ago, Yvonne was diagnosed with cancer, cervical or ovarian – doesn’t matter. It was the same cancer that killed John’s first wife.
John said NO!
He wanted to fight the cancer. He wouldn’t let cancer take his wife again.
John goes to every doctor appointment. He keeps track of every medication and dosage and when and how she is supposed to take it. He sat with her while she went through chemo. He shaved her head – and his – when she started to lose her hair. He isn’t letting her go without a fight.
They don’t know what the future holds, or if the cancer has spread.
I’ve been with my husband for eight years – married for five of them. We have a beautiful four-year old son, three dogs, and a cat. For the most part, we are a happy family.
As long as I’ve known my husband, he’s had these episodes.He loses control, and snaps on everyone and everything in his path. He’s broken windows, phones, end tables, lamps – the list is never ending.
When these episodes happen, the man I married isn’t there.
He’s gone, and something else takes over. He’s told me on numerous occasions that he doesn’t remember what occurs during these episodes.
He can remember the episode, but he doesn’t remember his words or actions. He told his psychiatrist that he almost blacks out when he gets to that point in his rage.
She gave him some more medication, and basically said, “See you in a month.”
He feels worthless, and that makes him angry. He isn’t a talker, but when he does talk I can hear the anguish in his voice.
He says nothing happened to make him the way he is. Nothing terrible – nothing worthy of the rage inside him.
He doesn’t want to be this way, he doesn’t want to be anxious and hopeless and angry and sad.
But he doesn’t know how to stop.
It used to happen when he couldn’t find any weed. Then someone would come through with some, he’d smoke it, and the world would right itself.
That ended with a police escort to the local hospital.
He spent three days there, changing his medication and talking to someone for ten minutes a day. He attended group sessions, and when he came home, he was ready to be better.
It was a week before he had another episode.
And since then these episodes have been happening every 3-5 days. Some are more serious than others. The last time, he threatened to kill himself.
Unfortunately, that isn’t anything new, except that, this time, he also threatened his mother and I.
We’re going to try therapy, but right now, it feels like he’s a ticking time-bomb, set to go off at any second. From the outside, I know it doesn’t look like he’s trying but he is, he really is.
So this is where I need help, The Band:
Do I stay, or do I go?
Do I walk away from my husband because he’s sick? Or do I stay, even if it’s to the detriment of my sanity, and my child’s well-being?
I don’t know what to do and I have no support network.
My son’s father was never in the picture, and my mother is a recovering addict – currently incarcerated. My godmother, the woman who raised me, is dead. I have a brother, but he has no job, and no home.
My best friend was witness to the gun incident, and has mostly given up on me. She told me that I’m codependent, and making terrible choices for my child. She thinks I should leave my husband, like she did. But her husband was an alcoholic – mine isn’t.
My in-laws have been terrific. Any time we need somewhere safe, their home is always open. But they are elderly – one of them is in a wheelchair. I feel I can’t burden them with this. I feel I am making them choose between their son, or their grandson and I.
Where can I go? What should I do? Please, The Band, help me. I feel so alone. I’ve prayed to every god I can think of, and I still feel so lost.
There is no handbook for when you marry someone with mental illness.
This person was my whole entire world for three years. This was My Person, the love of my life.
They loved me.
Completely.
All my flaws.
My Person made me feel whole.
My Person calmed the negativity I had in my life.
My Person held me when I needed to cry. They listened when I needed to yell. This person sat behind me and picked head lice out of my hair for 8 hours when I cried because no one else in my life would help me. My Person was so beyond good for me.
My Person believed in me and my worth and well… I really don’t know.
I have no excuses except I was young and dumb and influenced easily by people that should have been supporting me. I longed for THEIR approval and love and if I didn’t have that, why should I deserve anything else.
I left this amazing person with a heavy heart but headed in a direction I was being basically shoved into for many years.
Even after I left I tried to make it work. I mean, no one else would ever want me.
During this time I searched out My Person.
They’d moved far away to another land.
They seemed happy and from what I could see from my computer screen didn’t want me anymore.
I did reach out, I called, I emailed, I basically stalked this person.
But they had moved on. I was just a memory to them; that was okay. After all, I didn’t deserve them.
Fast forward a few more years.
I still watched My Person from afar. I was friends with their family but still had not contact with My Person.
That was okay. I was happy knowing they were happy.
I met someone, dated for a few years, got married again. And I am finally HAPPY! Well, at least most of the time. My old negative thoughts are all still there but I’m mildly successful at pushing them down.
A couple weeks ago, My Person showed up in my life again like a whirlwind.
They have never been far from my thoughts; I still watched.
But here they were in my inbox and we’ve been talking and it’s like the last twenty years disappeared and I am right back where I was, where we were; My Person and I.
And I am so so so in love. I always was.
And I’m torn: how can I love two people this much? What do I do?
I need this person in my life, they are a part of me has been missing for so long.
It’s like I got my right hand back. I need them to know I love them. Because I do…
…but we can’t be together.
I love where I am now, I love the person I’ve married. I love my home and my job. Right now? There’s half a century and twenty years between us, but I still need them in my life.
I find my mind wandering a lot lately.
The what if’s.
I find myself wanting to wake up in one of those stupid romcoms where everything is different but it just seems right and you don’t want to wake up.
I want to find a damn DeLorean and make different choices.
We are enjoying a day off. It’s Easter weekend. Reflecting Christ’s sacrifice on the cross. He is cutting up vegetables. He cuts himself and is bleeding everywhere.
Why does he think his needs are more important than mine?
Now, I need to help him feel more comfortable.
Constantly complying. I am not a part of the equation. I have been SPEAKING for years, repeating myself constantly. I don’t ask anymore. I don’t ask for things. I don’t ask for affection. I am living in limbo. Boundless. Floating.
I am invisible.
I need to be released from this responsibility that I’ve been carrying for too long.
For the last eight years we’ve drifted apart, each of our roles were extremely different from the others.
I was primary care taker of the baby, he just worked to not be in pain. He was in and out of doctor’s offices, and in bed most of the time he was home.
He was cold to me. He couldn’t help it. I know.
To me, he had it easy: just relax, lay in bed, watch TV, take medicine, have another useless steroid injection.
Umm… when do I get the debilitating disease so I can sit on my ass all fucking day? I feel trapped, imprisoned.
I had grand expectations that he would complete me, complete my life and it would be this grand ball with dances and tea parties. Our roles are still tragically different, neither supporting one another, neither of us need each other. We are in different places, both have different goals.
We are in the same room, breathe the same air but we’re worlds apart.
The lack of trust and respect – it’s killing us. I cannot trust that he’ll be there. That he’s ALL IN. We’ve been having some good months lately… but soon, that chronic pain will take him and paralyze him again.
And… so here’s the state of our union. I’ve become accustomed to not including him in my day. He’s had so many limitations, so many special needs. He’s never been able to engage, so I forget that he’s there sometimes.
Somewhere between the chronic pain, taking days off for doctor appointments, disappointments, missed opportunities, we disappeared. I stopped trying to make the structure we live in a home. He was too busy or too sick to care. He didn’t want me. I got used to that.
I became hard, and cold. I worked so hard to leave my father’s house only to end up exactly where I started. I try. He tries. We both feel the unbecoming of us though. It was a slow fade to black.
I’ve veered on a divergent path and, if I’m being honest, I don’t care if he follows or goes in the opposite direction.
These days, the only real way I can relate to men is if they are anonymous, objectified, and made common.
Maybe if (they or) I become more anonymous, objectified, common, I don’t have to engage. I can pay to play. I can pay to heal in a way. I can acquit myself of the emotional debt.
