Happily-ever-after dies when his suffering takes center stage. There is no room in my home for me. I am not enough or I am too much. HE TAKES EVERYTHING OVER. There is no room for my anguish and sadness. There is no place to hide my face. There is no safe place. He has taken them all.
Blast.
Gave up a dear friend, she was toxic to our relationship, but I loved her like WHOA. When my mother passed away in 2007…Michele would have known how to be present. She would have known what to say and when to be silent. She would have reminded me of things I had said. She would be encouraging. But I couldn’t reach out to her. When all doors where closed and all paths were blocked… I turned to Jesus… the first place I should have gone.
Thwack.
Work becomes more important. I am valued here. I am celebrated for my vision, my word, my inappropriate humor. I am secretly trying to think of ways to work overtime and contribute more to after hours events.
Zap.
I explain my desires, my needs. I dive deep, despite the risk, and ask for him to play the role of Daddy and let me be the little girl who needs to be safe and protected. He shames me. He has starved me out. I fall deep into self loathing and hatred. Trust has been severed. Heart has turned stone. I have shut down any trust I ever had. I never speak of my sorrows or pain to him anymore. Initially he’ll try to help…. But then…. In the next couple weeks, when we’re arguing, he uses it against me — ultimate betrayal.
He is constantly nudging me and giving me looks to act appropriately.
I can’t be me…when he’s around. I celebrate with joy when he leaves the house.
I run around foolishly and make a huge mess.
BANG.
I confront him. Air out my grievances. He doesn’t remember any of it. I am in a puddle of hormonal rage and anxiety. I AM NOT CRAZY! God speaks to me clearly and tells me to commit to doing a 40 day fast. During the fast, he shows me his favor. He shows me my strength. I emerge as a warrior. If I can fast for 40 days, I can fucking do anything. My faith is stronger than ever. Jesus will never fail me. I need to commit to only relying on him for all my needs. Mortal men are the most pitiful of creatures. Why was I so blind?
Zip.
He leaves me a note by my nightstand. It’s this long paragraph of lovely words I’ve heard before; Something about him recommitting to us, to me, and becoming the man he needs to be for me.
((( Pause for rolling of the eyes )))
The time and energy for him to write that letter, he could have just taken action. He is all talk. TALK TALK TALK TALK!
If he wants to be the man for me… then bring me coffee in bed, don’t let me worry about putting gas in my car or its maintenance needs. Remove money as a concern for me. Obtain employment that can carry the family and cover us with health insurance so I don’t have to … be the man of the house. Be the spiritual leader that we need. Be the captain of the ship. Be honest about who you are what you need. Don’t suffer in silence. Don’t be so chicken shit. Run interference for me so I can be the wife, mom, and Christian that our family and community craves.
((It’s not too much to ask.))
Smack.
Emergency room visits, doctors that are worthless, procedures and surgeries that do more harm for his crippling debilitating disease. Come to terms with the fact that I will his caretaker. Make plans for WHAT IFs. Keep accurate medical records. Organize it all. Learning to be knowledgeable about his health conditions. Understand his lack of memory is not his fault. Pain is all consuming. Find a support group. Learn to ask for help. Cry more. Learn to be ok with anger but try not to let it consume your soul. Ask Steve the hard questions. Write down his eulogy. Face the facts. Time is not on our side.
Whack.
He comes in this morning and interrupts my workout. I take my headphones off and he informs me that he can hear me laughing all the way on the other side of the house… it’s a 2800 sqft house. So what? I can’t listen to my podcast and laugh in my house now? HE FUCKING TAKES EVERYTHING FROM ME!!!!!!!!
I asked him about having another baby. Nope. He took that away from me too.
I mentioned Viagra and invoked world war three!
Slam.
His only autonomy in our relationship is the ability to say no. No to my advances. No to all my solutions.
It’s the only real strength and control he has. He builds constant brick walls in conversation.
When he looks down on me and berates my music choices because there is swearing… that does not make me want to be better or do better. It just makes me feel as if I’m in a play and I have no idea what my lines are, what role I’m supposed to be play.. He just makes me feel like a total fuck up.
Wham.
A rift, a fault line separates us. We are on divergent paths. I don’t know where to go from here. I have read all the books, signed all the contracts, invoked all the spells, prayed and fasted, repented for my wicked ways only to cover my face and cry, “ABSALOM, ABSALOM!”
Aunt Becky’s daughter, Amelia, is the sole reason that The Band exists. Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
She was born in September. It was hot. And in 12 weeks, we would be speaking a new language.
My baby was just 2 days old when we learned that our “perfect” world was not to be. My whole life I dreamed of motherhood. It’s what I wanted to do, more than anything. Be a good mom. Raise a family. Teach a little person about my faith.
Rewind to my college days – I was one of those students that changed majors more than once. First I was going to be a teacher; I majored in elementary education. Then after two summers directing a summer camp, I learned that wasn’t really for me. I wasn’t a fan of the parental drama.
Then I was an accounting major. I was going to be a CPA. Then I realized I needed more and ended up an accounting minor with a business administration major in both finance and marketing.
But none of that told me what I wanted to do with my life.
All I cared about was that someday I was going to get to be a mom.
I married my high school sweetheart. We’ve been together since 1992. We got married. Got jobs and got ready to have the “perfectly perfect normal life” that we’d always planned. God has a funny sense of humor sometimes.
And then almost 3 years after we got married, 11 years after we first met, we had Natalie.
And then in 2 days, our world was rocked.
Her bilirubin level of 22 just would not go down.
Our family doctor made the decision to send her to a bigger hospital in a bigger city. He told us that his ego was small enough that he knew that she could get better care and more answers there. The ambulance drove away, and we felt terribly alone. She was whisked away to a NICU and our baptism into a world of medicine was begun.
Our baptism was truly begun with a Baptism.
Natalie was taken to a NICU in a town an hour away from where she was born.
My baby sister Bridget was taken from the same hospital to an ICU just 21 years before, after she was born. She never returned home.
I know that was on my dad’s mind.
My baby sister was born with Transposition of the Great Vessels. She lived 7 days. She was operated on by a fantastic surgeon, who just happened to be the very same surgeon who would perform our daughter Natalie’s very first surgery, a cholangiogram.
The surgeon did his fellowship at Children’s Memorial in Chicago. This same place where Natalie would someday have her liver transplant.
So many coincidences…
Our NICU surgeon made the comment to us that is the title of this entry, “We think it’s Biliary Atresia, but that’s really bad so hopefully that’s not it…”
I don’t hold a single ounce of ill will toward the man. Natalie’s case confused everyone.
She was born with a gallbladder. Albeit a shriveled, ugly, non-working gallbladder. But a gallbladder, nonetheless. And that’s just not common in Biliary Atresia.
In “classic” biliary atresia, by the time most kids are born, their bile duct structure (gallbladder included) has shriveled up and is not working. But Natalie was born 5 weeks early, and it’s a progressive disease – meaning it gets worse as time goes by.
Back to my dad. He’d seen things end badly for his child. I know he had his grandbaby’s soul in mind when he told me that we needed to baptize her.
I am a Catholic.
New babies = Baptism is second nature for me. But the reality of this was too much to bear. I’d had the story of Bridget’s birth and death memorized. I was 4 when she died. Her death is my very first memory. Her death prepared me for my future role, of that I am now certain. But in that moment, I could not face it.
Here I was 2 days after the birth of my child.
I’d had pre-eclampsia. I was induced just two days before following 35 weeks of pregnancy. I was a swollen, puffy blob, having gained 30 pounds in the last month of my pregnancy alone. My husband said that the moment I gave birth to our daughter, my blood pressure had skyrocketed to 250/204. No joke. I was given magnesium to prevent a stroke or a seizure.
My mind was so fuzzy.
I was still in shock.
I wanted my “normal” life back!
I was in denial.
This wasn’t happening.
Why was my dad suggesting that we baptize my baby? Did he think she was going to die? I dug my heels in. (At least I tried to. I could only fit my fat feet into a chewed up pair of black sandals – that my German Shepherd had gotten ahold of.)
So my dad did the good dad thing. He did the responsible thing. He overruled me.
He called our dear friend, the priest. He had been the priest at our church when Jason and I met (we met at church, have I mentioned that?). In walked my dad and the priest, through the sliding NICU doors and over to Natalie’s bassinet. I watched it in slow motion. I remember it in slow motion. I don’t even think I have any pictures of the moment that is forever etched in my mind.
At the time of Natalie’s first surgeries, we had not created a website for our kid, Facebook was not around, and MySpace was a name I called my bedroom. What I am saying is that I did not document my thoughts and feelings at that time, the way that I do now. Not that you would have wanted me to. You see, for the first 3 weeks of Natalie’s life, we lived in our home and visited our baby in the NICU.
We did not know in the beginning that Biliary Atresia would be Natalie’s final diagnosis. She began her stay in the NICU under the UV lights, like any other jaundice case. We’d work on “normal” things, like trying to get her to eat. The first day it was 15 ml every 3 hours, then 20ml, then we finally worked up to a whopping 30 ml. I was encouraged, cheered on even, to keep breastfeeding. And so I did. It gave me a purpose. A sense of control.
And when you can’t control anything, you’ll control that one thing with everything you’ve got.
I took to it like a champ. Strike that. I took to pumping like a champion dairy cow. I focused on finding ways to increase my milk production levels. I found special teas marketed themselves as “Mother’s Milk” tea. My loving husband was my biggest advocate. We’d walk down a long hall, into some section of the hospital that was no longer in use, except for the rare nursing mother pumping session. There was a room with 3 old chairs, a sink, paper towels and soap (for keeping supplies clean) and outlet. Not much more, except for some posters donated by a La Leche League USA. I’d plug my Medela Pump into the wall, take a seat on the old metal chair that was missing chunks of vinyl on the seat, and watch the milk rise in the bottles, feeling victorious as the ounces would climb higher and higher, knowing this was for my girl. The aches I felt, sitting hunched over, were worth it. This was for Natalie. This was making her stronger, this I could do.
After a few days, they did a full blood work-up. Her GGT level was around 1700 (normal is 5 – 55), letting the doctors know that something else was wrong.
They’d take her for an ultrasound. “Inconclusive.” She was born with a gallbladder, after all, and was stumping them.
After this happened 3 times, she had a HIDA scan, and then an open cholangiogram and also a biopsy, all on the day that she turned 2 weeks old.
That’s when our surgeon met with us and drew on a paper towel what we were looking at.
He had opened Natalie up, injected dye, and then tilted the table to watch the flow of the dye. And that’s when he said that he hoped that this wasn’t Biliary Atresia. He and the Pediatric GI attending to us in the NICU, both referred us to a wonderful team of doctors at Children’s Memorial in Chicago. And in the meantime, the biopsy slides were sent to Mayo clinic.
Mayo’s answer came back “Biliary Atresia.” But all other local doctors disagreed. So we got the slides back and took them with us to Children’s Memorial.
When we arrived in Chicago, it was like no place we’d ever been. There were bright colors everywhere. There were multiple waiting rooms with lively fish swimming in tanks. We were escorted to an examination room on the first floor. We thought that we must have been in the wrong place. There were no plaques or diplomas oh the wall. We met two doctors and told them we’d hear the term “breastfeeding jaundice.” The awesome doc, the head of the pediatric gastroenterology at the hospital, gave me a look like I’d just crawled out of a cave. “That is a myth. We’ve disproved it.” OK, I thought. Not going down THAT road with him. I had just had my first lecture by a genius, and I wasn’t a fan of lectures. But it let me know that we were in the right place. They knew their stuff. And above all else, they forbid me to feel guilty.
The fellow (also a doctor, so many levels of hierarchy at the hospital) took the slides and reviewed them. He asked the genius doctor to review them. Their first review said that she may have Cystic Fibrosis. They said it just did not present like “typical biliary atresia.” And so, sweat tests were done = “negative” was the answer. Genetic tests were sent away, and those took 6 weeks to get back. 6 long weeks of desperate waiting. The results came back negative.
After we had left the NICU, we waited for the other shoe to drop. We were still waiting. We waited for the bad news that we knew would come. Every inconclusive answer left me feeling more and more frantic. Genius doctor had told us that for a Kasai Procedure, the procedure to treat Biliary Atresia, to be most successful it must be done by the time the child is 12 weeks old.
The clock kept ticking.
Just a few days later we returned to Children’s and during a follow-up exam, Natalie happened to have a dirty diaper. Genius doctor took one look at it and re-diagnosed her with Biliary Atresia.
Who knew the answer was in the poop?
She was admitted and had another biopsy; it was again inconclusive. The kid is consistent. She then had another cholangiogram, this time a percutaneous type, which was then followed by a Kasai Operation on December 19 of that year. She was 11 weeks old. We’d gotten her surgery in by the time she turned 12 weeks.
Her new surgeon (also a genius), called hers a case of “correctable Biliary Atresia.” We’d learn later that things are not always what they seem and rarely are they as simple sounding as something called “correctable.” But, for the moment, we had an answer.
She got to come home on Christmas Eve.
Little would we know that within a year she would be listed for a liver transplant. I could not have guessed at this point that when she turned 17 months old that I would be giving part of my life to her.
One of my goals for the new year was to “spend some time living outside the computer, even though the real world is fast and scary and full of people who wear jeggings.” It seemed a bit loftier than “Not become Lil Wayne” (which I should add, is a resolution I’ve managed to keep for an entire month and a half now) and loads better for my self-esteem.
See, people are all, “bloggers are introverts who have no social skills and hate crowds of people,” which makes me all, “um, not so much.” Because while I may greet you for the first time by humping your leg while eating a hot dog, THAT DOESN’T MEAN I DON’T HAVE SOCIAL SKILLS. In fact, I’d venture to say that it means I EXCEL at social skills. Just ask all the people who have restraining orders against me.
What can I say? I’m a friendly sorta person.
But when I dared to tell myself that I had to be more social, the Universe was all, “bwahahaha, sucker,” and threw me a wicked case of the flu. Two weeks and counting.
(and yes, Pranksters, I’d go to the doctor if I actually had something worth treating)
So when my good friend Dana showed up at my house unexpectedly, I was all, OMG A REAL PERSON IN MAH HOUSE. I ran around frantically to find a hot dog to eat while I humped her leg. It was pretty wicked to have someone over. Especially since I can now make people spend at least ten minutes oohing and aahing over my purple-flavored walls.
We sat and caught up for a couple of hours while Amelia performed tricks in front of her Auntie Dana like a good show-dog. It was nice. I can’t remember the last time I spent any amount of time with someone who didn’t want to talk about work.
She also noticed how clean my house was, which made me all barrel-chested with pride. See, I like a clean house. Problem’s been that my husband works a kajillion hours a week and doesn’t seem to care one way or another whether the house looks like a shot out of a Hoarders episode or not. I’m not entirely convinced he’s not blind.
Plus, the three crotch parasites used to delight in pulling absolutely everything out and leaving it in one ginormous pile for me to break my toes on. I tried to keep up with the mess, but damns, it was hard.
Then a magical thing happened.
My children grew up. They got anal about house-cleaning. Dave started giving a shit about the house. The Guy on the Couch helped me clean.
And most importantly, I have been sticking to my other OTHER New Years Resolution – “one a day.”
I’ve been donating, dumping, and throwing away one thing every single day. It sounds really hard, right? Like, one thing a day for a year is a fuckton of shit to dump. I hate committing to things that take a year (mostly because I’m an impatient sea-hag).
You know what?
It’s been easier than I’d thought. I’ve managed to get rid of more than one thing each day, which means that my house becomes more manageable each and every day.
In the same way that it feels good to hear, “damn, you look like you lost weight” when you’ve been dieting, it felt amazaballs to hear “your house looks the best I’ve seen it,” from someone who knows you well.
(others might have been offended, but not me)
Now if only I could find a home for that stupid monogrammed embosser thing I’d bought (while probably drunk) that I’ll never use.
Anyone who has had to bear the burden of being married or in a long term relationship has inexplicably been stuck in the same predicament year after year. Who gets you for the holidays or any other day of the year that your family may deem IMPERATIVE that you be home.
I have been blessed with both in-laws and a family who do not become angry if I am unable to make a particular holiday. Neither of us gets outright YELLED at or threatened to be written out of a will or two. No, they’re MUCH more subtle than that. I’ve experienced the passive aggressive, sullen and disheartened,
“Well, ooooookkkkkay, I GUESS it’s OKAY if you don’t make it. Your BROTHER would have made it.”
The Daver deals with the same stuff.
And I have to be honest, I ADORE the holidays.
It’s the most wonderful motherfucking time of the year, after all. There is nothing more magical than the Christmas season, aside from maybe a freshly shorn nutbag, but I digress. The lights, the smells, the sounds, the bells, I love it all. I love shopping for gifts, I love decorating for the holidays; I love that magical first snow of the year.
And I admit that I even love seeing my family and my in-laws. I adore both sides of our family; and I love seeing them for the holidays.
As usual, there is a catch: both sets of parents EXPECT that they are the most important members of the family, and are therefore entitled to certain unalienable privileges. Most of those being our time WHENEVER THEY WANT US TO for the holidays. It isn’t as though I don’t want to see them; I do.
But I can’t say that I enjoy my holidays spent in the car going from one place to another. Although traveling isn’t a problem for us; we like to get going as much as the next person. But spending 7+ hours a day in a car with a small child for a couple of hours with each set of families is going pretty far beyond what anyone else in the famili(es) do.
It only compounds matters exponentially that my parents, living about 1 hour from us, see us far more than Dave’s do, living 3+ hours from us (although, by some untapped miracle Dave claims that it only takes an hour and a half. Aside from teleportation, I have no idea how he gets there with such speed), which makes us feel bad. This, in turn makes us try to bend over literally downward facing dog AND the tree trying to appease whatever holiday requests they ask of us.
But no matter how much we break our backs for the families, no one else will meet us halfway. We get no”Well you came out by us last time, now it’s our turn.” If we cannot attend a gathering, there will be no offer to see us or come out to our house at a rescheduled date. Which would explain why I found a couple of little gifts I had picked up for my in-laws LAST YEAR in my vanity. Just SHAMEFUL.
Let’s compound things once again: I have a child whose father is not Dave, and said father wants to see his child on the holidays, too. So Dave, Ben and I are stuck grappling with the seemingly senseless fragments of 3 timetables from 3 families.
We have to make it to cities, W, X, Y and Z in a matter of 1.5 days. These cities are 1-4 hours apart. So we could alternate the cities based on a number of factors (If we leave for W at 6pm after work, get there at 9, stay til 6am drive 4 hours, arrive at 10:30, open gifts, smile, laugh, eat, leave at 1pm if Ben has had nap, drive another hour, drive an hour back, open more presents, better not nap b/c you’ll look like you’re not having fun, drive 1.5 hours home, utterly exhausted), but it essentially boils down to extra traveling time for us, but not for anyone else.
Here’s my resolution, dear Internet, next year this foolishness will be done, and we won’t exhaust ourselves traveling multiple hours in the car just to appease everyone for the holidays.
At the end of last month, I wrote an entry about one of my little brothers and I wanted to share it here with other Pranksters. Normally this is not the type of stuff I share, so getting it down was pretty difficult. I knew if I didn’t do it, it would eat at me until I did. So here it is…
I was at a loss for words, which rarely happens, so I got my son (The Boy) ready for an outing. Which means I handed The Boy off, informing my husband (Gadget Guy) that he needed to take a break, so I didn’t go outside smelling like a gym shoe.
Given the promptness of Gadget Guy’s willingness, I must have smelled pretty bad.
Once I got cleaned up, changed a massive poopy diaper, and got in the car, I decided to go to the mall. I had to take my wedding rings to get cleaned and decided that walking the mall would be as thought-provoking as anything else. Plus, it’s still reaching the low 100′s here in the afternoon, so outside was not an option.
Normally, the mall provides lots of things for me think about: obnoxious teens, people who touch my child without asking, panic attacks in the elevator, using the family bathroom, and the list could go on.
However, this is what caught my attention:
It’s an ornament. I found it in Hallmark.
And this little thing was enough to make me start crying. I was bawling like a baby in the middle of the Hallmark store. My son, who is a 5-month old baby, looked at me like I was a crazy person and the Hallmark lady asked if I was okay.
I muttered something about stubbing my toe, picked up the ornament and paid for it. Then, I high-tailed it out of the mall, as to not make a bigger spectacle of myself. I’m sure you’re wondering how this tiny replica of a 1939 musical fantasy character made me break down like I did.
Sit tight, because I may not make a whole lot of sense here, as I’m already getting teary-eyed at the thought.
I’m the oldest of four children. I have/had two brothers and a sister. I say “had” because one of them died.
Little Brother #1 wasn’t even the one we thought we would lose, but Little Brother #2′s story will have to be shared another day.
Little Brother #1 was a little over two years younger than I was. We grew up together and were bestest friends until we hit puberty. Then we fought, argued and generally didn’t get along. All fairly normal sibling rivalry.
When I went off to college, things between the two of us improved. We appreciated each other a bit more and decided we just needed to agree to disagree and move on.
For the most part, this worked.
Little Brother #2 did things in his own time and in his own way. He had severe ADHD and at 14, decided not to take medication to treat it anymore. He graduated a year later from high school, didn’t go to college, and was (medically) discharged from the Navy. He bounced from one job to another. We were complete opposites in most of those regards, and I had a hard time relating to him.
And he always had a difficult time in social situations which was particularly hard on him. He was a friend to a lot of people, but didn’t have a lot of friends. He was easily taken advantage of. I didn’t understand why he would give so much of himself to other people when they didn’t give him the same in return.
He did excel in dramatics. He was one of the youngest students ever to be inducted to the Thespians Cub when he was in high school. He wasn’t cast often, but tried out for every play and he became the go-to guy for backstage production, lighting, and set design.
People referred to him as Tin Man. I’m not sure where the nickname came from, but he wore it proudly. He had it put on his Letterman jacket instead of his name. It was on his track jersey, the back of his drama t-shirts, and even on his class ring.
In the beginning of 2007, he died.
He was 21.
He was in a car accident, but it wasn’t drugs or alcohol, thankfully. He fell asleep at the wheel and rolled his car.
If there was anything fortunate about his death, it was that no one else was involved, and the freeway was completely empty when it happened. He was pronounced Dead On Arrival. The Medical Examiner said that it would have been quick and that he hadn’t suffered. I HAVE to believe that. I can’t believe that he sat in pain, I just can’t.
My parents didn’t handle it well. I stepped up to take control of things where they couldn’t. Gadget Guy was a live saver and helped support me while I tried to support them.
Little Brother #2′s funeral was epic. There were almost 400 people in attendance. It was amazing to see the sheer number of people crammed into the small chapel as I gave his eulogy. And after the burial we had a huge party in his honor.
In the end, all those people that my brother was a friend to came to say goodbye.
To honor his memory, and celebrate the one thing he loved the most, my parents had “Tin Man” engraved under his name on his headstone.
Now, I can’t watch the Wizard of Oz without crying. I can’t even look at an image of the tin man without choking up.
That is why I was bawling in the middle of the Hallmark. I didn’t even keep the ornament.
