You know that question, “If a tree falls in a forest and no one is around to hear it, does it make a sound?”
Well, here’s my question: “If something you don’t want to happen is taking place and you don’t blog about it, is it really happening?”
I thought if I didn’t blog about this and kept it a secret then I could save myself the agony of actually admitting that it is.
But I can’t not blog about it.
It’s my story and it’s important to me. So here it goes.
My breastfeeding journey has unexpectedly come to an end. I am devastated. Heartbroken. All those words that describe anguish? This is where I would place all of them if I had the time or space or energy.
I’ve known this day was coming. Fretted over it. Worried. Nervously paced back and forth trying to figure out a way that I could make it work for longer. But I have finally come to a point where I know there is no other choice but to stop.
I went off my depression medication in early August. It was the same medicine I had taken for depression while pregnant with Brigham. I took it for seven months and it was successful in keeping me stable during and after pregnancy. But over the summer I became increasingly anxious with the prospect of renting our house and buying a new one. I jumped head first into this exciting conquest. When it didn’t work out it upset me and I didn’t handle it well. To me, I lost another game. And I hate losing.
I spoke with my therapist about how I started to go downhill within about a week of coming off the medicine. I told her that my body reacts very quickly to meds whether I’m coming off or going on. It was hard to believe that coming off medicine could affect my mood so fast but since I’ve done this quite a few times already I knew where this was headed. And it wasn’t good. But I kept it to myself anyway.
My therapist is smarter than that though. She sent me to new psychiatrist. I was nervous to see anyone or go on anything. She knew that I was still breastfeeding and that my goal was to continue for at least six months. But she told me that at the very least I needed to have an action plan for when we knew it was absolutely necessary to go back on my meds.
So I went to visit a new doctor. He was every bit the mood disorder expert my therapist claimed he was. He actually listened to me. Took notes. It was obvious that he truly cared about my health. If you’ve ever been to a psychiatrist you know that is most definitely not the norm. For any psychiatrist worth seeing, it can take weeks if not months to get an appointment. But due to a cancellation and shamelessly name-dropping my therapist, I got in within a week.
He was unlike any doctor I’ve ever seen. Not too quick to over-medicate. As a full-time working mom of two little ones the last thing I need is to be more tired than I already am. Together we came up with a good plan of action. I left his office with prescriptions in hand. And told him that as soon as I felt the need I would use them.
After Labor Day, Brigham came down with his second ear infection and decided that the whole sleeping-through-the-night thing was a terrible idea. He would wake up screaming two or three times a night. He could not be consoled. I can handle the no-sleep thing for maybe a week. But a month? Not so much. Add to it that I had pneumonia in both lungs and the downhill slide became steeper.
At first when Brigham cried I felt compassion. But throughout the month of September the sound of his screams morphed into the sound of nails on a chalkboard. Many a night I would throw up my hands in desperation screaming that I couldn’t do this anymore. Let me just say there is a reason why they use lack of sleep as a form of torture during war. A month of no sleep and a baby screaming is enough to drive anyone insane.
I felt myself becoming less patient with Landon. I was snapping at Naaman. I couldn’t concentrate at work. All I wanted to do was drive away from my life. Hop in the car, gun it to 85 and make way for Mexico. All the while I felt incredibly guilty for feeling these feelings. I knew I wasn’t supposed to feel like this. It wasn’t normal.
I remembered back to when Brigham was born. I was so happy. In a state of bliss. I remember people asking to hold him and I didn’t let them because I didn’t want to put him down. I was in love with my baby boy. But by the end of September it was all I could do to pick him up when he cried. The constant screaming was just too much. When he would start crying I would too. I was way more emotional than usual. Lack of sleep is my biggest trigger for falling back into a depressive episode.
My mom recognized I was not myself and stepped in to help. She took the boys for a night so Naaman and I could get at least one night of sleep. When Naaman got home from work we went to bed early. But before we fell asleep I broke down in tears. He put his warm hand over my cheek as I lay sobbing.
I sobbed thinking of the countless times depression has robbed me of simple joys throughout the past seventeen years. Each time I have miraculously survived. Even when I thought I’d never last. Even when I didn’t want to. I stood up to him. And if I couldn’t someone stood up on my behalf. But here he is again. Knocking at my door. Threatening my life and my happiness. Even though he knows full-well that he is unwelcome. Even though he knows that I have slammed the door in his face before. He returns anyway. Once again, the battle to reclaim my life begins.
Naaman told me that we’re just going through a rough patch and it’s going to get better. And deep inside I know that. Deep inside I know that Brigham won’t always cry and I won’t always be sad. And then he said the words I needed to hear the most.
“I’m worried about you, Molly.”
That’s all it took. Because Naaman knows me better than any other person on this earth. If he is worried about me then I know it’s true. He is my mirror. I can look at him and see far more than any sliver of glass could show. We both knew that I was at the beginning stages of postpartum depression. But I decided I am not going to let it happen. Depression has already stolen too many precious years of my life. I refuse to hand over more. Especially not the first year of my baby’s life. No, my boys are too important.
The next morning I found the crumpled prescriptions at the bottom of my purse. I dropped them at the pharmacy to be filled and picked them up after work. I stared at the warnings on the bottle for quite some time: Do not use while pregnant or breastfeeding.
Damn it. DAMN IT! I was less than 30 days from my goal of six months. I didn’t make it. DAMN this depression for ruining yet another part of my life.
I wish I could describe how I felt when I took that pill. I’ve taken it before but it never meant the end of something so important. The end of one of the most amazing experiences of my life. The end of breastfeeding.
I thought about the last time I breastfed. It was Sunday, October 3rd. We had tried to feed Brigham a bottle at a birthday party but he didn’t like the formula. So I went out to my mom’s car. It’s amazing to me that I really didn’t care who walked by and saw. All I really cared about was getting my baby fed so he didn’t cry at the party.
The whole process was effortless. I pulled up my shirt, he latched and my milk flowed. Just like it’s supposed to work. Just what I had wanted. It was a beautiful moment between mother and son.
I wish I had known that that would be the last time I would breastfeed my son. I wouldn’t have been in such a rush.
The next day, when I got home from work my breasts were full and aching. Nature had come to an abrupt stop and it’s clear my body didn’t get the memo. Even though I thought I wanted to drive away from it all, truthfully I missed my baby when he was gone. I swooped him up in my arms and kissed his forehead. I sat down on the couch and started to pull up my shirt. The urge to nurse was instant and strong. Funny how it only felt like a duty in the beginning. But now, now it was mother’s instinct in its purest form.
Then reality smacked me in the face . . .
Molly, you can’t anymore. The medicine is already coursing through your body. But it can’t be in his.
That night before I placed him in his bassinet I held him. I gently rocked him to sleep. Tears dripped from my cheeks. A consolation prize for what should have been my milk. But I could no longer offer Brigham my milk. What I could offer him, however, were my words. I began to whisper . . .
I’m sorry, Brigham. I’m so sorry that mommy can’t feed you anymore. I know when you’re rooting at my chest wondering why I won’t let you nurse, you won’t understand. But I hope someday you will understand why I had to stop.
I hope you know how much I love you. If mommy didn’t need medicine to make her better I would have nursed you as long as you wanted. Please know that I’m sorry. Mommy tried her best. I want to thank you for giving me the chance to breastfeed. It was a dream come true.
He was fast asleep when I finished. Naaman walked in as I was wiping the tears away and asked why I was crying. I told him that I didn’t want to stop nursing yet. He said, “It’s okay, honey. You did great.”
I did, didn’t I? My journey to breastfeed my sons was not at all an easy one. While trying to breastfeed Landon, every single thing that could have gone wrong did. I was unable to nurse him for many different reasons. And even though Brigham was a latching champ, I had other breastfeeding roadblocks that I never imagined I would encounter. I still cannot believe I kept nursing after I had two huge MRSA-filled abscesses drained. And a case of thrush. And a new job started at eight weeks postpartum. And pumped in cars and bathrooms and supply closets. I kept nursing. For my son. For five months. For 150 days. I did not fail. I am scarred to prove it. Physically and emotionally scarred. And both my boys were worth it.
I have to get better. I have to stay well so I can take care of my family and myself. It’s just another part of my journey. I must accept.
I will miss breastfeeding. But depression cannot break the bond between mother and child. I won’t let it.
Cancer took my Daddy not even three months ago. The rest of the year hasn’t been much better.
2010 was supposed to be a fun year. A great vacation with my little girl – she was turning 5. We were so excited. First inkling that 2010 would NOT be cool? My 5-year olds dad would not allow me to get her a passport to take her on a cruise. The bastard didn’t think I’d bring her back! Wha? Obviously he knows me even less than he did when we were married. Idiot.
So my dreams of a Mama and Gigi vacation were put on the back burner.
February 2nd, I turned 32 and I wasn’t happy about it.
Where was my life? Not where I wanted it even though I did everything the right way. I graduated high school, went straight to college, graduated college, married college sweetheart and waited the right time after the wedding to have baby. We thought that three years was a good amount of time.
Uhhh…not so much.
Marriage was not a happy thing for me. Every day, I was put-down. My self-esteem shattered. I found out I was pregnant (because, you know, that’s what happens when you have sex and don’t use protection. After, all it was “cheaper” to use condoms instead of birth control pills. Or something like that).
All my life I wanted to be a mother. My pregnancy was awful. Not because I was sick or anything but because my husband was an asshole. He called fat and crazy, I started believing him while I wondered what the fuck I was doing with this bastard? Well, I needed to work things out because we were having a baby. And not just a baby…MY daughter, the one that I been waiting my whole life to have.
She was born on a freezing cold St. Patrick’s day. Came screaming into the world and was…perfect. This child was sent to save my life, I knew that the moment I saw her. We named her Grace (I call her Gigi online for “privacy”). I promised that little girl on the first night of her life that I would never let ANYTHING hurt her. ANYTHING or anyONE.
Life went on with a colicky, very super-attached-to Mama infant. That child cried more than I thought anyone could ever cry EVER. I wore holes in the carpet walking with her jiggling her and whispering “shhhhhhh shhhhhhh” to get her to sleep. We moved to a brand-new city when she was five months old. Because it’s REALLY a good thing to uproot a mom with severe postpartum anxiety and depression from her only support system (her family) and move her with her colicky infant to a new place where she has to “bring home the bacon” while he leaves at 6:00 am every day to get a fancy-schmancy MBA. I was in a really good place in life. /sarcasm
Two months into the hell that was this move, I was on the phone with my mother while I was pumping in a dark, cold, hidden office at my work. I told her how awful The Husband had been. I told her that he’d said he would “rather me be dead than be Grace’s mom.” (Now there was more that happened but I’ve blocked most of it out. Some broken closet doors, a night spent sleeping with 911 dialed on my phone in front of my daughters crib and some other stuff)
Somehow, this didn’t concern me for ME…but for her. My mom decided that she and my father would hook up their trailer that night and make the 3 1/2 hour trek and move us home the next day.
The next morning I got up and dutifully kissed my husband goodbye. I called my parents as soon as he was out and could no longer be seen on the road. By 12:30 we were headed “home.” I called The Husband and told him that we were gone and things needed to change before we came back.
I fully believed that we WOULD be going back. But then? Then my colicky cried-all-the-time-unless-she-was-attached-to-Mama’s-boob became Super Happy Confident 7-month old. What? My child was picking up on every single source of stress in me and reacting from that. Weird. I’ve always said she is my heart and she truly was…we have been cosmically connected from the moment of her conception.
Anyway…4 years and much angst, tears, anger, hurt, hearings, court sessions, lawyers and judges later – I was declared free and divorced from The Husband. Whoopee! But yet I still had to hand over a piece of me every other weekend and every Tuesday evening. Grrr. I still hate him even though he is now The Ex.
Anyway…2010 was a year of promise. It was going to be good. I had a job that was as close to my dream job as I could get (or at least as close to my dream salary being somewhat geographically challenged). This was going to be a GOOD YEAR.
And then? It wasn’t.
February 4th. My Mama took a slip on the ice. A couple of scary moments where we thought she was bleeding in her brain. BLEEDING in her brain. That was bad. I took off work and ran to rescue my child (whom my mother took care of and didn’t know if she was at school or not because she wasn’t quite sure when or where she fell – a severe concussion will do that to you).
February 5th. I got fired from my job. FIRED FROM MY JOB. I’m a single mom who bought her very first house not even 5 months before and my jackass bosses FIRED me. I won’t get into reasons but let’s just say they aren’t exactly all “legal.”
Then my Daddy starts having health issues while we are still dealing with my Mama’s issues. Now yes, I’m 32 years old but when I say I’m close with my family – I am CLOSEWITHMYFAMILY. Multiple conversations with each of them a day. These people are not only my blood relations but my best friends.
So…winter turns to spring, I may or may not be enjoying a bit of unemployment fun and playing the “stay at home mom” gig. Never thought it would happen as I’m a single mom and well, I have no sugar daddy.
April…my fabulous Daddy is diagnosed with fucking brain cancer. BRAIN CANCER. It seriously doesn’t get much worse than that. He died not even three months after diagnosis. Motherfucking cancer and the motherfucking staph infection that came with his surgeries. I am not prepared to be half an orphan. I’m too young for this crap.
Then my sister…ahhh…my sister. There are not enough words or space on this site to even get into her. I love her, she drives me crazy and I love her 4 children as my own. She moved them 3 hours away. 3 hours away! Not the best choice given everything going on (and by everything I mean that this storyline could rival any soap opera…I’m NOT KIDDING). So my dad dies, my sister moves, my daughter-my heart-my sidekick in everything starts real life school and I have NO FUCKING JOB.
Add onto this that my nephew (0ne of the 4 that my sister has birthed) has leukemia. Yeah…unfortunately after everything we’ve been through this year that is an afterthought now. Poor kid. But he is doing well so that’s always a positive.
So…that’s my story. I have no “home.” This story could go under abuse (which I grazed with my marriage to The Ex), Divorce, Cancer, Parent Loss, Grief, Economic Struggles, Infidelity if I got into my sisters story, chronic illness if I went into all of my back story (Ulcerative Colitis), Depression, Anxiety, Postpartum Depression, Family Relationships, Pediatric Illness and it could go on and on. So I just choose to categorize it as “Things That Are Bullshit.”
So my Band friends, this is a small piece of the fucked up-person that is me.
I’m in a full scale “life sucks” moment now and just hope eventually maybe I can shit rainbows and see unicorns again. Maybe after I kick this damn strep throat that I have right now. School cooties.
This is adapted from something I posted June 18, 2010: Autistic Pride Day. I’m bringing it over here because I’m thinking that if you or a loved one is newly diagnosed with Asperger Syndrome, you might not want to hear any more doom and gloom. You can find plenty of that in the many wonderful, helpful, but somewhat depressing textbooky tomes that are available at your local library. Asperger is challenging, yes. But it is also kind of awesome.
Autistic Pride Day. I know what you’re thinking: Didn’t I just see a bunch of copied-and-pasted status updates on Facebook about that a few months ago? Nope. That was World Autistic Awareness Day, which is April 2 every year. World Autistic Awareness Day is about letting you know that autism exists. Autistic Pride Day is about letting you, the neuro-typical person (or “NT” to us hipsters) know that autism can be kind of awesome.
There is a whole world of autistic pride and politics that I’m just learning about. (The most helpful piece of advice I can give you is that getting worked up about the politics of autism does not help the newly-diagnosed person one bit.) Autistic Pride Day is promoted by Aspies for Freedom, an organization that pushes not just for autism awareness, but awareness that autism has both advantages and disadvantages.
Let me just say this: I’m pretty sure the people at Aspies for Freedom are talking about people with fairly high-functioning Asperger’s Syndrome. If you’re the mom of a severely autistic child who’s still nonverbal at age 6 and never smiles at you, you’re probably ready to tell the nice people at Aspies for Freedom that neurodiversity can suck it.
Little Dude is more along the lines of the high-functioning Asperger’s. And I can certainly say there are distinct advantages and disadvantages to our situation.
In the spirit of Autistic Pride Day, here is my Top Ten List of Asperger Syndrome Advantages and Disadvantages.
Disadvantage #10 Little Dude eats the same thing, every day.
Advantage #10 Meal-planning is a snap.
Disadvantage #9 All Legos, all the time.
Advantage #9 May grow up to be the next Frank Lloyd Wright.
Disadvantage #8 Obsessive-compulsive behavior means we can’t leave the room unless the television and the power strip are turned off.
Advantage #8 Asperger’s Syndrome is the new “green.”
Disadvantage #7 Makes odd, surprising noises.
Advantage #7 Maybe other kids will think he’s beat-boxing.
Disadvantage #6 Despite having advanced vocabulary, Little Dude’s speech is sometimes very unclear.
Advantage #6 Woman behind me in check-out line doesn’t realize Little Dude is talking about testicles.
Disadvantage #5 Does not make eye contact with friendly pediatric nurse.
Advantage #5 Does not make eye contact with anyone at Walmart.
Disadvantage #4 “Motor-planning deficit” means he struggles to take off his own shoes.
Advantage #4 “Unusually intense, narrow area of interest” means he can beat adults at Wii Lego Star Wars.
Disadvantage #3 Talks incessantly about Legos, Star Wars, and Lego Star Wars.
Advantage #3 No longer talking about Dora.
Disadvantage #2 Sometimes says insensitive or inappropriate things.
Advantage #2 These things are hilarious.
Disadvantage #1Random muttonheads Concerned strangers ask me if I think he’ll be ready to potty-train sometime soon, why is he flapping his hands, and oh, you mean he’s like Rain Man?
It’s 1:30 in the morning, and we’re having the worst week since my daughter’s diagnosis of Type 1 Diabetes. Insane blood glucose numbers, ever-increasing insulin needs, ketone testing…and the endless blood sugar testing. My daughter is a pin cushion, and I hate myself each time I jam another needle into her skin, when she winces, but doesn’t say anything, when it hurts badly enough that she says “Ow, that one hurt,” it feels like razors cutting my heart to ribbons.
170 days since the diagnosis. 170 days since I leaned against the wall in the hallway outside the emergency room and allowed myself the luxury of five minutes of tears. 170 days since I called the ex-girlfriend and the midget’s father in the middle of the night and told them to get to the hospital NOW! 170 days since I watched them strap my daughter to a gurney and load her into an ambulance. 170 days since I heard the term “PICU” and realized that’s where my daughter was going. 170 days of trying to readjust to normal, and realize that nothing was ever going to be normal again.
170 means at least 700 finger pricks and 700 injections. And that’s assuming that every day we only test four times and give four injections. Which never, ever happens. When she runs high, I give insulin corrections, then check again to see if she’s come down. When she runs low, I give sugar, then recheck to make sure she’s gone back up. Not even six months in and she’s had 1500 holes poked into her body.
I’m sitting here at 1:30 in the morning waiting for it to be 2AM so that I can test her again, and then lay down and try to sleep, but I know that I will instead spend the rest of the night waking up every thirty minutes to make sure she hasn’t gone low in her sleep. If she does, she doesn’t wake up, which could mean…I can’t even bring myself to type the word, can’t bring myself to use it in conjunction with my beautiful, precious daughter…but it would be very bad.
On the other hand…when she runs high all night like she has all this week, I think about all that sugar in her blood, and the damage it’s doing to her body, knowing that it’s coating the blood vessels in her heart and her eyes and her kidneys, another layer of damage, bringing her that much closer irreparable harm. It sickens me, makes me physically ill, makes me want to scream and cry.
170 days of wishing that I could take her place for each finger stick and injection.
170 days of wishing I could take away her type I diabetes.
hen I showed up to the pediatric transplant unit for my first day of residency, it was mercifully dark and quiet, the nurses flitting purposefully about as stealthily as they could. The only sounds I could make out beyond the steady mechanical hum found on any hospital unit were the occasional IV beeping, signifying, perhaps, an occlusion in the line or that a bag of fluids was now emptied. It was quieter than any unit I’d ever been on before.
Reds and blues and bright yellows lined the hallway and I noted cheerful balloons painted on the walls as I thought to myself, how wonderfully non-clinical it all looked. How perfectly child-like. It seemed only fair that if a kid were sick enough to have to be in the hospital, at the very least, they could feel at home.
I spied a television with a DVD player and PlayStation stashed in a corner, and marveled at how this hospital really had been designed with children in mind. The unit fridge was stocked with puddings and chocolate milk and chips and graham crackers; all stuff my own two-year old would have happily eaten. I felt as though I might actually be in some sort of elaborate daycare facility rather than a major children’s hospital. There was even a McDonald’s in the basement.
It wasn’t until I got my first assignment -a baby; severe liver failure- and saw that my one-year old patient was the size of a three-month old that these children weren’t having much fun. These kids weren’t on vacation. They weren’t at daycare. They were sick as hell. Some were well on their way to dying.
And still, even as these children died, life went on outside.
People bustled by on the streets, knowing, perhaps, the name of the hospital and the types of patients, but never knowing that fear. The fear that lives in your gut once something horrible happens to you and you know how in the cosmic scheme of things, there is no “fair.” They’d never know how terrible it is to listen to children -innocent children- in pain. These people would never have to voluntarily inflict pain upon their own flesh, their own blood, because sometimes life deals you a wild card, and you do the best you can.
They’d never know about the secret places in the hospitals, the PICU’s; the NICU’s where small, but real lives routinely hung in the balance. Where cosmic scales made absolutely no sense. Where kids lived and where they died.
This secret place, the land of tears.
When they’d think of hospitals, they’d think of the places where old people went when they were ill. Where your appendix or a foot or two of colon would be removed and you’d go home. Cured. Where you’d splint your broken arm, x-ray a broken leg, and bandage up that nasty gash on your finger. Where old people died.
Hospitals weren’t places for children. Because in a fair and just world, kids wouldn’t get sick and kids wouldn’t die.
Kids wouldn’t be born without brains, or with only part of their brains, or born too early, too soon to live. Babies wouldn’t be born still. Kids wouldn’t need dialysis or organ transplants. No kid should have to know the torture of chemotherapy. No parent should have to send their kid to the morgue. No family should have to plan a funeral for a child.
Death, dying; transplants and cancer, those are things that should affect the old, the people who had loved and lost, married and had their families, kids, grandkids; people who had lived.
—————–
My universe is less random than I once thought it to be.
When I birthed my sick daughter, Amelia, it just so happened to be where the very same children’s hospital where I’d previously worked had just opened up a satellite unit. At three weeks of age, she underwent neurosurgery, and for the second time in her life, she became a patient there. First in the NICU, then the PICU.
The monitors blipped intermittently for my daughter, gown bearing the same logo I’d seen so many times before, when her heart rate dipped or she’d forget to breathe and watching them, I’d shake her tiny feet, whispering breathe, baby, breathe into her pink shell of an ear. And then she would inhale, those glorious oxygenating breaths filling her lungs as the monitors would once again blip normal vitals. The alarms would stop shrilly alarming and yet another crisis would wink at us in the rearview mirror as it passed.
Her father and I signed furtively in and out of the NICU, then PICU after we were buzzed in by some unseen, nameless, faceless person into a locked, secret unit; mere ghosts of ourselves. We’d drift in and out for the tenth or sixtieth cup of coffee to keep ourselves awake and functioning, getting gluey food from the cafeteria to put into our mouths and chew, never tasting it. Sometimes, our paths would converge with other shells of parents. We’d smile knowingly as we passed; the kinds of smiles you smile without any trace of joy. Those commiserative, “you too, eh? Well, FUCK,” smiles, not the, “hey, friend, how are you?” kinds.
We learned later that we were the lucky ones. The ones that were buzzed out of this unit with our daughter in her carseat, strapped tightly in and screaming her head off.
The unit of sadness, of broken dreams and tears. Laughter and heartache.
When you say things like this, I want you to remember a face.
This is my daughter. In this picture, she’s playing soccer. With a Special Olympics team.
You see, she was born with a metabolic disorder that caused brain damage when she was only a week old. She may never read over a third grade level. She still has a speech impairment despite 12 years of therapy. She’s socially inept at times.
Yeah, she’s what some people would call “a retard.”
Only that word is complete and utter bullshit.
Hearing that word cuts both her and me worse than any knife could. There is absolutely no reason to use that word. EVER. Don’t give me the bullshit that it’s a medical term. If you do, I’m liable to scream “shut the fuck up” in your face. Well, maybe not, but I will be screaming it in my head.
If you’re going to use the word retard, you might as well use words like nig****, fag****, dyke, cunt… Oh, but you won’t use those words. Those are bad words.
But retard? Well, that’s not so bad. After all, the only people that’s only insulting the mentally impaired. And they don’t know what is going on, do they?
I have news for you though. They do know what’s going on. Mentally impaired people have feelings, hopes, and dreams just like the rest of us. If you take a few minutes and actually get to know someone who is mentally impaired, you’ll discover that.
This isn’t about being politically correct. It’s about showing some RESPECT.