Category Archives: cleft palate

I Should Have Stood UP

We have just arrived home from a quick bite out for lunch. It was at a small restaurant not too far away. We love the food and the atmosphere – usually. Today it was quiet and relatively slow but one table made up of four people, started to chat rather loudly after they finished eating. Of course this is par for dining out – it’s what people do – they eat, they talk, then they carry on with their day.

But this conversation – it hit home. It enraged me. I almost pulled up a chair to their table to figure out the nuances of it because I wanted to verbally bitch slap the woman with the short brown hair into 2014.

The table was comprised of two adult women and two obviously teenaged boys. They appeared to be brothers. One was probably mid-late teens with the other one just getting started. The younger one had a speech impediment. It was not at all horrific, it just made him sound as if he had an accent of sorts. In fact, that’s what I thought it was at first until I listened closer. While I hate this analogy, he sounded like Elmer Fudd but with obviously deeper issues than just his mispronunciation of an “r”.

The conversation was innocuous at first – discussing swimming, school work, etc. Then it turned to this young man’s speech.

The adult woman with the brown hair, we’ll call her Hilda for the sake of saving me from typing a lot more than necessary, laid into this poor young man for his speech. “You’re going to have a hard time getting a job..yadda yadda yadda… you should try harder, if you just don’t move your tongue… maybe if you did yadda yadda yadda..I can barely understand what he says most of the time.” You get the drift.

Hilda kept on at him.

He defended himself.

She kept going.

He KEPT defending himself. Finally he asked where the bathroom was and left. I ALMOST went over when he left but decided that IF I did anything, I wanted him to be there when I did it so he would KNOW that people are willing to stand up for him and not everyone is going to tear him down.

But I didn’t.

I let the ball of anger grow in my heart, this rage for this young boy who was being attacked within earshot of me by someone I assumed to be his caretaker (mother, aunt, whatever.. she was obviously close to him). I just sat there and eventually J gave me the keys to the van so I could leave and as I did, I overheard Hilda ask the boy to say “Girls.”

He said, “Goils.”

“Now, say it again but don’t move your tongue.”

“Goils.”

“There! I think it sounds better without you moving your tongue.”

Only there was no noted difference.

I muttered, loudly under my breath as I left, “What, are you some sort of SPEECH THERAPIST? JEEZ, lady!”

This evil woman. This sorry excuse for a human being is making this poor boy think that he is going to LOSE at life because of his speech impediment. She is setting him up for failure before he EVEN GETS STARTED AT LIFE IN THE BIG WORLD. I left without doing anything. I LEFT WITHOUT SHOWING HIM THAT PEOPLE WILL STAND UP FOR YOU.

I should have said something. I should have told him that as long as he is doing the best he can with what he has, that’s all anyone should ever expect of him. Of course we all want to strive to be better. As a mother with a daughter who has her own speech issues due to a cleft palate, I should have stood up and fought for him against this horrible monster. I have seen the strength it takes to pronounce a single sound when your mouth isn’t built quite right and know the complexities involved in forming what we take for granted in perfect pronunciations. So he has a lisp or an impediment. Big deal. He’s still an awesome kid and doing the BEST HE DAMN WELL CAN. Recognize that. Build THAT up. Don’t tear it down because that? That is not helping.

Don’t assume because someone talks differently that they are stupid. Don’t assume that they are idiots or that they can’t talk right simply because YOU cannot understand them. The issue there – with not understanding them – is YOURS, not theirs. FOR THEY ARE COMMUNICATING THE BEST THEY CAN WITH WHAT THEY HAVE. Are you listening the best you can with what you have? Are you merely listening to what they are saying or are you striving to actually HEAR what they have to say beyond what may originally sound like garble to you?

For the record, I understood EVERY single word this young man said and I wasn’t even sitting across the table from him as Hilda was doing. His speech impediment isn’t that bad in my opinion. But according to the way Hilda discussed it, you’d think it was some horrific “he will never be able to communicate with the world at large” issue. Only it is not that way at all.

In my humble opinion, Hilda is the one with the impediment because she fails to see the beautiful, driven, dedicated young man who is fighting with all his might to communicate with others. She fails to see that he is already miles ahead of her emotionally because instead of tearing her down in response, he simple defended himself.

I should have said something. So instead, because I didn’t stand up then, I am writing about it now. Maybe this is the coward’s way out. But I could be quiet here too – quiet on a platform I have at my fingertips. When someone else is being torn apart and there is something you can do, you shouldn’t just walk away. I failed. But I am writing this because I want to apologize for walking away and hopefully inspire someone else to NOT follow in my footsteps.

If we all stood up for those who are caught in the sights of a bully (like Hilda), the world would be a far more awesome place and maybe the bullies would think twice before attacking someone and tearing them down.

 

The Scorpion Tale of Perinatal Mood Disorders

Last night, I had a rather in-depth discussion with Addye over at Butterfly Confessions. We’ve discussed the same topic before and we’re finally doing something about it because we both think there’s not enough out there about this subject. Her blog post went up last night, discussing the role her antenatal depression, postpartum mood disorders, and other mental health struggles have played in her son’s recent diagnosis of being on the autism spectrum. While our children’s diagnoses are different, our story is the same, and it begins with a long hard look at the stinging guilt with which we now carry along our paths of Motherhood.

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It’s taboo, really, more so than admitting you struggled with a Postpartum Mood Disorder. It’s a secret locked in a trunk hidden in a house deep in the woods where no one will find it. It’s the poison-tipped tail of a scorpion, the thing that gets you after the initial reaction of having a scorpion land in front of you. It’s the nagging feeling you get in your throat every damn time you look at your kid and think, even for a brief second, that you did that to them. It’s YOUR fault.

I’ve been there. I still am, sometimes. Not as much as before, but it’s something that I will always carry with me. A small part of my heart will always be tinged with guilt and a depth of sadness I’ll never shake. I’ve learned to accept it instead of fight it, to give it space to just breathe, knowing I’ll never get rid of it as long as I live. Right next to it though, now, is a space that is filled with a peace I’ve worked very hard to achieve – a peace that cancels out that guilt and sadness…as long as the see-saw is working that day, that is.

I struggled with Postpartum OCD after the birth of my first daughter. I’ve made no secret of that. I sought help but was shot down by my OB, an integral part of this story. I had to fight on my own to heal. Looking back, I didn’t do a great job at healing. What I excelled at was shoving all of the darkness down and faking it until I felt like I made it. Only by the time I got there, I was pregnant again and my hormones became the scorpion.

They flowed into my pregnancy, along with severe morning sickness. There were days I had to choose between eating or my prenatal vitamin. I often chose eating because I knew the vitamin would make me vomit whereas I might be able to keep the food down. One day, I lived on just one powdered donut. Other days, less. I couldn’t tolerate food for almost four months, if memory serves correctly.

I remember thinking I didn’t need the prenatal vitamin. I’d be okay, baby would be fine. Or so my hormone rattled brain said so. I didn’t want to get up, I would lay on the couch as our oldest, just a little under a year and a half, begged me to play with her. I couldn’t move or I’d vomit. So she learned to play by herself.

The pregnancy progressed, everything seemed fine, I didn’t have Gestational Diabetes again, the baby measured fine, all was good.

Until my baby shower. I went into labor that evening. I was 35wks and 6 days pregnant. (Women with untreated antenatal depression are more likely to go into labor early….or so says the research). At the time, I didn’t relate the two. I just knew I wasn’t full term and contracting. I labored at home until the next morning when we finally saw the doctor. I was dilated enough for them to send me to the hospital. Baby was on her way. Instead of happy, I was nervous. What was wrong? Why was she coming early? We were close enough to full term, really, less than a week away. But still, she was early.

After 42 hours of grueling labor, my daughter was born. She looked perfect. 10 fingers. 10 toes, screaming, a perfect squishable pink human all mine. I made her. As I tried to latch her to nurse, she wouldn’t latch. Just kept screaming. I didn’t know why. I tried for 30 minutes. Then we called the Lactation Consultant. I knew what I was doing, damn it, I had nursed our first for 16 months. Why wouldn’t she latch?

The Lactation Consultant swept her mouth as soon as she got to our room.

That’s when shit got real.

My darling perfect little squishable baby was rushed away from me, the word “cleft palate” left hanging in the air.

There I lay, in a hospital room, epidural still wearing off, all alone, no staff, no husband, nothing to show for almost 2 full days of labor except for the echoing of my heart shattering, insidious voices flooding my head with the phrase, “It’s your fault.”

I did that to her. She grew inside of me, imperfectly.

I lost it that night, brushed my hair for 10 minutes in front of the mirror. Ugly cried on the phone a lot that week, so much so that my ex-husband couldn’t even understand me at several points. In front of nurses. I cried a LOT. This? Wasn’t the way things were supposed to go. Why had I failed?

She was in the NICU for 21 days, undergoing one major surgery for her jaw at just 9 days old. Seeing your 9 day old infant on apparatus breathing FOR her… yeah.. um… yeah. “I did that to her.”

The kicker? The geneticist at the hospital asked me if I took my prenatal vitamins. I lied. I didn’t need any more guilt. I really didn’t. In my fog, I failed a lot.

People told us if we made it through the first year….we’d be scot-free.

They lied.

She’s seven now. Is one of the bubbliest personalities you could ever hope to meet. She’s perfect in every possible way. But she’s struggled so much and her struggles are far from over. Because of me.

She fights for every word she says. It could be worse, I tell myself. She could have so many other issues kids with her same condition have – texture issues, an additional syndrome, etc. Aside from her Pierre Robin Sequence at birth, she’s fine. She has speech therapy, and has had additional surgeries to help with her speech. Before she was 2, she’d been through three times as many surgeries as I have in my entire life.

I did that to her.

What if I’d taken my prenatals? Would she have been born this way? What if I’d fought harder for myself in seeking help for my depression after the birth of her sister?

Intellectually, I KNOW it’s not my fault. But still, the sting is there, long after the scorpion has faded out of sight.

It’s there, just a tinge of it, every time we talk. Every time I have to decipher what she’s said to me based on the context of the words I am able to understand because I still can’t understand every single thing she says. I recently won $200 headphones. They help me immensely in understanding her when we Skype. The ear-buds I had before just weren’t high enough quality to do so. Even now, I have to make her slow down and repeat what she’s said because she’s seven and well, seven year olds get excited.

She will need a lot of orthodontic work. She has the risk of giving birth to a child with similar issues. Kids will tease her because of the way she talks. She was born a fighter without having a say in the matter. While I know this will serve her well later in life, it is something with which I struggle.

Some mothers have Postpartum Depression, Anxiety, PTSD, etc, and they heal, with no adverse affect on their children. But there are those out there who experience issues with their children. And because of what we’ve been through, we draw that line from point PPD to point whatever Alphabet Soup DX with our kids. There’s research to back most of it up. There isn’t research (that I’ve found) to back up PPD related to cleft palate but a “Friend” of mine once tried to draw a line to the type of med I may have taken to my daughter’s cleft palate. Punch.IN.THE.GUT.

Moms like me need a gentle hand. We need to be heard, not dismissed. We don’t need to hear that “It’s not your fault” because in our heads? It is. It always will be no matter how much you tell us that it’s not. It just will be. We need you to stand with us, to be there when we need to scream, cry, vent, and shake our fists at the sky. To understand that our truth is a hard truth and sometimes it will break us but we will rebuild, a constant practice in our lives shattered by this spike of unexpected blow-back from our already complex, shame, and stigma-riddled experiences.

We are women made of glass. Under that glass, yes, we are steel, because we have to be, but on the outside, we are glass and we shatter. We need you to be someone who lets us shatter, someone who helps put us back together and take another step forward as we walk toward processing our new truth.

It’s time for us to come out of the darkness and speak up, to be honest about the role we feel we played in the issues affecting our kids, and to find support, REAL support, not dismissive attitudes, in our search for the light both we and our children need to thrive. We seek out the research drawing the lines from Mom to our kid’s issues, whatever they may be. Sometimes, the line tracing back to Mom is real, worth exploring, and worth understanding. Without it, we’re just left wondering why. I, for one, don’t like hanging out in the middle of nowhere with no answers.

Any answer, even a horrible one, is better than no answer at all.

It’s something. A direction in which we can begin to move forward from, a new beginning from which we can start to walk toward solace. Even if we never reach it, walking toward it is often enough. It has to be, right?

 

 

 

My breasts, my sanity, MY CHOICE

Yesterday afternoon, the tweet you see to your left was sent out by a friend of mine. Of course I clicked. Then I waited for my phone to fully load the page. Once it loaded, I scrolled through the article. With each new point, my rage increased. Not until the end of the article did the author even begin to show a shred of compassion for mothers who rely upon formula in medically necessary situations. Even then her compassion was thin and failed to mention mothers struggling with postpartum depression. A few back and forths about the article then Karen Kleiman posted a rebuttal. So did Ivy Shih Leung over at Ivy’s PPD Blog.

And now? I give you mine.

My mother nursed my brothers and I for 18 months each. Or that’s what I’ve been told. I’m sticking to it. I grew up thinking breastfeeding was normal. I grew up used to seeing my mother nurse my brothers. It was how they were fed. It wasn’t weird. Or strange. I wasn’t scarred by the experience. I was six years old when my youngest brother stopped nursing. Closer to seven, actually.

When pregnant with my first child, I knew I would nurse. Because breastfeeding is how babies eat. She, however, had other plans that first day. Not interested in the boob. Didn’t eat at all in the hospital. We were sent home with barely any instruction but by god, they sent a bag with free formula samples. Which I used when she was screaming at 10pm that night and I couldn’t get her to latch. We used three of those samples the first night. I woke up the following morning determined to make breastfeeding work. For us, it did. She latched and we didn’t look back for 16 months when she finally weaned. Breastfeeding was the ONLY thing I did right with her in those early days. I failed at everything else. I couldn’t handle her screaming. She nursed for an hour every two hours so I stayed on the couch. No outside support. I was modest, didn’t want to nurse in public, etc. Quick trips in between nursings became the norm for us. At three months postpartum, my doctor asked me how important breastfeeding was to me as my daughter screamed in her carseat next to me. Seriously? I left his office even more defeated than when I walked in. I left with no help. Clearly I had to do this on my own. She thrived, I broke down.

My breakdown continued into my second pregnancy, leading to an early delivery. Our second daughter was born with a cleft palate. Once again, I expected to give birth, nurse, and go home. I had higher hopes for starting nursing this time. Instead, later that evening, I was trained in how to use a Medela Symphony and clutched cold hard horns to my poor not yet full breasts. No one explained colostrum’s small production to me and the nurse even laughed at what I got that first try. Again, I was defeated. My biggest moment of defeat? When the nurse asked me what kind of formula I wanted our daughter to have.

“But, but.. I’m going to nurse her. She’s getting breastmilk.” I stammered.

“Honey, until your milk comes in completely, she needs to eat. What kind of formula? We have Enfamil or Similac.” the nurse stated.

“Enfamil.” I sighed and cried when she left.

And that was just the first day.

Let’s visit the day I was in the pumping room at the NICU and my daughter’s nurse started a feed with FORMULA just minutes before I exited with well over 8 ounces of fresh Mama milk. I made her stop the feed, dump the formula, and start a new one with my milk. Oh hell yes I did. Or what about the day of her G-tube and ear tube surgery when the nurses spilled 5 oz of her milk as they tried to get the Kangaroo pump to work? I was not nice.

At the same time though, I had to be okay with my daughter getting formula in those early days. Yes, I thought formula was evil. But when I couldn’t be there or have enough stored breastmilk at the NICU, if my daughter didn’t receive formula, she would have DIED. We had a toddler at home. The NICU was over an hour away. I couldn’t be there 24/7. So formula had to be okay. It wasn’t evil. It wasn’t non-nutritious. It was saving my daughter’s life. I needed to not feel guilty about what my daughter received. I needed to not think about how it was changing her gut flora. I needed to not be judged because damn it, I was trying as hard as I could but the pump only removes so much milk. I pumped around the clock – every three hours except for a luxurious 5 hour stretch in the wee hours of the morning when I let myself SLEEP. Sure, I could have stayed awake around the clock and made more to avoid the evil formula but again, I had a toddler. One needs sleep when attempting to care for a toddler. Or they win. Everything. And that, people, can get ugly fast.

I pumped exclusively for our second daughter for seven long months. During those seven months, I was hospitalized in an Acute Flight risk Mixed-Gender ward. I pumped every three hours there too. Pumping fed into my OCD. Clean, sanitize, run the kangaroo pump, pump, repeat. Every three hours. On top of caring for a toddler. On top of a husband working 70+ hours in the restaurant industry. On top of two dogs who ALWAYS waited to need to go outside until right after my let down whilst pumping and usually had an accident in the house. I made peace with a lot of things – lowered my standards for a lot of stuff. Because my daughter needed my breastmilk. I threw myself down the rabbit hole and wallowed there. I resented her. I hated her for what I had to do.

At seven months, I stopped. For my sanity, for my relationship with my family, for my daughter. We weren’t bonding. I was going crazy. When it’s a question of my sanity vs. breastmilk? My sanity will ALWAYS win. I cried when I bought formula. Expected to be judged and would have had a serious conversation with the person judging me. Possibly would have offered to invite them to my home to see just what it was I dealt with on a daily basis.

As I stated in Don’t Judge me, the manner in which baby is fed doesn’t matter. As long as everyone is thriving, that’s all that matters. Yes, we should be educated. But education does not have to come in a harsh form as it does in the “Pushing Formula is EVIL” article. State the facts. Be honest. Forthright. Respectful. Don’t make me feel guilty for my choices. If you have to preface an article with the following:

NOTE TO MOMS: Don’t read this if you are feeling vulnerable, guilty or overstressed. NOTE TO ALL: I’m not a therapist but a researcher in child development.”

Chances are you shouldn’t be writing it. I preface things with “vulnerable” here. But never with guilty or overstressed. And based on the article, it’s clear the author isn’t a therapist. If she were a therapist, she would have been far more compassionate and understanding. If she had read recent research stating “Postpartum Depression and difficulty Breastfeeding often go hand in hand” she may have been more compassionate.

Depressed moms may use formula more often than other moms. Breastfeeding is tough for us. We struggle with touch. We struggle with throwing ourselves under the bus because quite frankly, we already feel run over by the damn bus.

Motherhood is about making the right choice for our family. Not making the right choice for someone else’s family. Not about judging others for their decisions. Not about filling people’s heads with unresearched facts in a demeaning manner.

For the record? My daughter is extremely bright. She tested almost off the charts in verbal comprehension at four. So did her sister.

When their brother was born, he nursed like a champ. But then I had emotional crisis at 3 months. My medication combined with my stress killed my supply. He was diagnosed as failure to thrive at six months having gained only four pounds since birth. The pediatrician suggested I pump. I knew where that road led. I closed the milk factory and he switched to formula in just two days. He gained weight, I was less stressed, and we thrived.

Formula worked for my family. It wasn’t evil. No one pushed it on us. I made educated decisions to use it. It saved my second daughter’s life. It saved my son’s life. It saved MY life. The author states that if one cannot breastfeed, a wet-nurse or milk from a milk bank is an acceptable substitute. I agree. But at the time, I couldn’t even get my insurance company to pay for what I felt was a “medically necessary” hospital grade pump. How on EARTH would I get coverage for milk-bank breastmilk?

Don’t ever tell me Formula is evil. It saves lives. The end.

My breasts, my sanity, MY CHOICE.

BOOM.

KevinMD guest post misses the mark about Mothers

This evening I happened upon a guest post over at KevinMD by Dr. Srini Pillay, MD, an author and an Assistant Clinical Professor at Harvard Medical School. KevinMD has been a site I read more and more these days. I enjoy the insight offered by his knowledgeable guests. Today’s post, however, has me shaking in anger.

Dr. Sirini Pillay’s post is entitled “What a psychiatrist learned in therapy sessions with mothers.” It’s also posted at Pillay’s other blog, Debunking Myths of the Mind under the title “I love my children but hate my life: Solutions to Dilemmas Mothers Face” with the subtitle of “A balm for all guilty mothers.”

(Please note: All text below in italics and bold is directly from Dr. Pillay’s article)

 

Dr. Pillay pontificates a few reasons for the psychological issues/stress mothers experience during their lives. With every one of them, his explanation (in my opinion) places even more guilt upon the already exhausted and stressed out mother rather than offer true solutions for her success as a mother. Perhaps most glaring  in his examination of the trials and tribulations of motherhood is the omission of any mention of a Postpartum Mood Disorder as the source for the points upon which he offers his expert insight. I find it impossible to believe, given the statistics of Postpartum Mood Disorders (1 in 8 new mothers), Dr. Pillay has never seen a mother with a Postpartum Mood Disorder or is unaware of the additional issues a Postpartum Mood Disorder brings to the dynamic of Motherhood, especially if said Postpartum Mood Disorder goes untreated. It is both appalling and irresponsible to me for a Psychiatrist to fail to mention such a glaring issue in the face of addressing issues faced by Mothers.

First up, Dr. Pillay mentions Perfectionism. “New mothers often expect to be perfect rather than the best that they can be,” Why does the mother expect to be perfect, Dr. Pillay? Is it because SHE has placed those ideals in her head? No. It is because society has placed these ideals in her head. We are absolutely expected to be pristinely Stepford in our execution in the assigned task of Motherhood while Fathers are expected (also unfairly) to be aloof idiots. What Dr. Pillay fails to mention is that those of us who are obsessive perfectionists are at a higher risk for developing a Postpartum Mood & Anxiety Disorder. What he fails to mention is that, in order to overcome this “Peril of Perfection” society must also change their view of Motherhood. Instead, Dr. Pillay perpetuates the stigma and tells Mothers “you can always strive to be better by making small changes. Holding yourself to a standard of perfection can lead to burnout in all areas of life, because you are constantly striving for something that does not exist.” I agree, Dr. Pillay. But the same society fails us when they perpetually hold us to a standard of perfection, for which when not reached, we are then automatically judged and crucified.

Next up, burnout. Burnout is a direct result of perfectionism. It’s also the direct relation of attempting to care for an infant while struggling with the depths of a Mood Disorder. Study after study has proven the adverse effect of Postpartum Mood Disorders on sleep. Have a Postpartum Mood Disorder? You won’t sleep as well when you do sleep. Sleeping less and lower quality of sleep are both symptoms of a Postpartum Mood Disorder. Yes, everyone knows new mothers don’t sleep much. But moms with a Postpartum Mood Disorder sleep even less and achieve a lower quality of sleep when we DO sleep. Another kicker? Our children sleep less and at a lower quality as well. So now you have an exhausted dyad attempting to live up to an impossibly high societal standard which is now even further out of our grasp. Need more ammunition here? We’re also told to snap out of it if we seek help. Stigmatized. Made to feel guilty. Not allowed to have the “time” to be depressed because by God we have an infant to raise which is what we were bred to do. Failure is not an option. So we stay silent, we suffer, we weep, we wail, we dry our eyes in the face of the public realm because we’re not allowed to have emotions other than those seen in Johnson & Johnson or Pamper’s commercials. Everything is to be picture perfect. If it’s not, we’ve failed. Dr. Pillay’s suggestion here? “So rather than force themselves to think and feel differently, addressing the burnout can help many problems all at once.” I would have loved to have addressed the issue of burnout. I attempted to address the issue of burnout with each one of my children. I asked for help. I begged for a night nurse from the pediatrician once our second daughter came home after nearly a month in the NICU after being born with a cleft palate. His response? “Why do you need a night nurse?” I had a toddler. Two dogs. A husband who worked 70+ hours a week. I was exclusively pumping every three hours and running a Kangaroo pump on the same schedule. I had to clean my daughter’s PEG site and jaw distraction sites a total of 4-6 times a day on TOP of everything else. Sleeping would have been a gift from the Gods. Yet I was denied and landed in a Psych Ward less than two months after my daughter’s birth through no fault of my own. No amount of forcing myself to think and feel differently would have helped. But I tried to address the burnout. That too, failed.

Now we move into “The best balance.” This paragraph’s opening sentence really captures judgment of mothers across the world: “When women feel overwhelmed, they essentially need to ask themselves why they expect something impossible from themselves.” Again, he’s absolutely right. Yet again, it’s society which has trained us to expect the impossible from ourselves. Dr. Pillay goes on to suggest “The reality is that if a woman has a need to work and have a baby, she needs to find a best balance that is right for her and her family.” Again, I agree. But if a woman has a Postpartum Mood & Anxiety disorder, she is already wracked with guilt. Attempting to find balance in her life is not achievable until she has begun to heal from her fragile mental state. A woman with a Postpartum Mood & Anxiety disorder can barely survive her day let alone find balance in her life until her mental health issues are addressed. Any health professional or anyone I knew mentioning to me all I needed to do to improve was to “find a best balance” in my life when I was in my darkest days would have heard an earful. We’re barely able to keep our own heads above the fray – how are we expected to balance too?

“There is no one-size-fits-all type of mother, and different types of mothering produce different positive and negative outcomes.” Amen. And yet, society expects Sally to parent like Suzie and Suzie to parent like Bethany and Bethany to parent like Rebecca and Rebecca to parent like Jody and Jody to parent like.. well.. you get my drift. It’s the whole Stepford thing. Again, society does not allow for this sort of flexibility. Mothers with Postpartum Mood Disorders parent far differently than any other mother on the planet. We realize the value of self-care because it’s necessary for our survival. For some of us, it’s necessary for our children’s survival. We are judged for how we parent. How we HAVE to parent. We are judged for expressing our frustrations, for choosing to formula feed, for choosing not to go the attachment parenting route, for letting our little ones watch TV because we’ve had a tough day. Yes, we heal from a Postpartum Mood Disorder but when you’re in the thick of it and family members or random people in public are judging us, we have a harder time letting it go and then BAM. Hello guilt. Hello Xanax. I love the idea, I love the theory of “no one -size-fits-all type of mother,” I do. But it doesn’t work in the real world and certainly doesn’t work when the public thinks of mothers with Postpartum Mood Disorders. A mother with a Postpartum Mood Disorder is a horrible mother to most – we’re stigmatized and in addition to overcoming the every day normal judgmental issues which accompany motherhood – we must also overcome the additional perception of our “bad mother” rep.

The final paragraph recognizes that “It’s not all you.” It’s not. It’s genes. It’s how our child is wired to react. But guess what? Kids of depressed parents are more at risk for issues like ADHD. They sleep less. Their quality of sleep is less. Dr. Pillay says, “Parents who take on all the responsibility of this often distort this, feeling as though they are fully responsible for how a child turns out.” Wait a second. Aren’t we? What about Parents who are arrested for the behavior of their children? Parents who are judged because their child isn’t yet sleeping through the night or wets the bed or isn’t getting good grades in school? Or Parents who have infants who are not yet eating solid foods even though they keep trying? Yet, Dr. Pillay’s solution is for PARENTS not to blame themselves when their child doesn’t “lean on their own sense of responsibility.” He also goes on to add this gem: “Also, mothers who are alarmed by their own mistakes set a challenging standard for their children who may grow up to learn that mistakes are “bad” rather than inevitable but not a reason to give up.” Let’s say a mother has a doctor for her Postpartum Mood Disorder who keeps telling her she’ll get better with every therapy they try. Instead, she continues to worsen. Eventually she’s convinced the fault lies within her. That SHE is the problem. Some of these mothers may even give up and just live out the rest of their lives without trying any more therapy because they are the issue, not the therapy. So of course she will raise a child to believe mistakes are bad as opposed to inevitable. Of course she will raise her child to believe once a mistake is made more than once that giving up is the proper course of action. Or even worse yet, let’s say mom doesn’t get treatment at all (which is the case with most mothers struggling with a Postpartum Mood Disorder, by the way), this issue will spill over into how she raises her child and no amount of pulling herself up by the boot straps will change her thinking. She’s leaned on her own distorted sense of responsibility and it didn’t work for her. Why should she then expect it to work for her child? Why would she not consider herself fully responsible for her child’s behavior when society does just that on a daily basis?

My absolute favorite part of Dr. Pillay’s piece is the closing paragraph:

“Thus, when mothers find their relationships thrown into disarray, they may want to re-examine their own standards and relax their judgments toward themselves as they allow themselves to be more human and the very best that they can be without needing to be perfect.”

Sighs.

If only society would let us, Dr. Pillay. If only society would let us.

I’d like to add though should a mother finds her relationships thrown into disarray, she should not immediately blame herself for the fault of the disarray. Yes, she may truly be at fault but the other party may be at fault. She may be struggling with a Perinatal Mood Disorder or another type of mental illness. There are many additional reasons for the fault of relationships to be at fault other than the internal (yet societal driven) standards imposed on Mothers today. Perfectionism is imposed, not perceived. Failure to achieve perfection is perceived yes, but the standards we fail to reach were, at some point, imposed upon us by society. If we truly want to help mothers overcome the perception of succeeding by not being perfect, we need to first change society’s view of mothers, not mother’s view of themselves. The standards we try to reach our not our own… they are the fences between which we are forced to live. Until these barriers are removed, we will never succeed.

Prematurity Awareness Day: Remembering to Breathe

[youtube=http://www.youtube.com/watch?v=jPz3YaIJkjQ&fs=1&hl=en_US&rel=0]

2 AM and she calls me ’cause I’m still awake

~Anna Nalick, Breathe~

I couldn’t sleep. It was time to pump again. If I did not pump, I stood to lose the precious supply of breastmilk I struggled to establish. Every three hours I hooked myself up to a yellow hospital grade Medela pump. The plastic horns were cold. Hard. Definitely not the warm natural manner in which I expected to be providing milk to my new baby girl. Never-mind she was in Atlanta about an hour away.

I sat on the couch, in the dark, hooked up to a whirring machine via tubes. 70+ miles away, my daughter was doing the same thing, hooked up to machines, whirring and straining to keep her alive.

‘Cause you can’t jump the track, we’re like cars on a cable
And life’s like an hourglass, glued to the table
No one can find the rewind button, girl.
So cradle your head in your hands
And breathe… just breathe,
Oh breathe, just breathe

~Anna Nalick, Breathe~

She was a little over 4 weeks early, my second daughter. A late-term preemie but a preemie none the less.

We had no idea she had a cleft palate. Or a recessed jaw. Or a compromised airway. Or a floppy tongue.

No idea she would be in an ambulance less than 24 hours after birth heading toward a NICU in the nearest large city.

No idea we were about to get a crash course in medically fragile infant care.

No idea of the plan to take our lives and turn everything completely upside down.

The plan was to have a baby. Go to the hospital, give birth to a healthy baby, nurse, go home.

Our plan failed. I failed. I wailed. I cleaned. I screamed. I cried. I wanted to leave her at the hospital. She was not mine. The hospital had made a mistake. They could keep her. I could not do this. I couldn’t. I just… I…. I was delusional. In shock. Processing but yet…. not.

Detached. Clinging to a series of routines. Clean, brush, wash, change, pump, meds, yell, scream, argue, repeat.

Stuck at home.

What I wouldn’t have given to have had her stay inside for a few more weeks.

To have known before we had her of the issues we would face.

But we did not.

I do not know if knowing would have changed a damn thing. I think it would have sometimes. But then I realize I cannot change what has been. Only what will be.

There’s a light at each end of this tunnel,
You shout ’cause you’re just as far in as you’ll ever be out
And these mistakes you’ve made, you’ll just make them again
If you only try turning around.

~Anna Nalick, Breathe~

The day we were to learn how to place an NG tube, I sprained my ankle as I got up from pumping on the couch. My husband freaked out along with me. Then I instructed him to bring me an ankle brace and ace bandage, bag up some ibuprofen and tylenol, and grab an ice pack. There was a grown up hospital across from Children’s. If things got worse, I would go, I promised. I never went. The nurses asked why I was limping. When I told them, they chided me. I did not care. I had limped around since arrival. 42 hours of labor wracked my body. I had the shakes, fever, signs of trauma. I kept going. I burned and re-tore. I should have slowed down. Rested. But I could not. My daughter needed me so I threw myself gleefully under the bus, a Cindy Crawford Pepsi ad smile glued to my face.

Why?

Because this is what a Mother does. Right? Right?

Everyone told us just get through the first year. The first year is the worst.

What they didn’t mention was the follow up appointments. The speech therapy. The potential for behavioral disorders. Allergies. Orthodontia. Additional surgeries. Ear Tubes. Feeding Tubes. Depression. Developmental delays. Hell.

They also did not mention the joy we would feel when our daughter, at four years old, finally blew out candles on her birthday cake all by herself. I cried.

Or the joy when she finally started talking and could TELL us in her voice instead of with her hands how much she loved us.

Or how much joy would spread across her face as she blew up a balloon after surgery #6 which created a pharyngeal flap to close off excess nasal emission of air previously preventing her from blowing up a balloon.

Or her giggles when she first blew bubbles.

Or how big we would grin as we listened to her teach her 2 year old brother talk.

How good it would feel to as she finally made progress.

How good it would feel to understand 80-95% of her speech instead of 25-50% of her speech.

How good it felt as we both recovered from depression and felt the sun’s warmth on our faces and in our hearts.

How grateful we would eventually be to God for carrying us through such a huge storm.

2 AM and I’m still awake, writing a song
If I get it all down on paper, it’s no longer inside of me,
Threatening the life it belongs to
And I feel like I’m naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you’ll use them, however you want to

~Anna Nalick, Breathe~

When I became pregnant with her brother, I began to blog here. Not so much for others at first, but for me. I needed the support. I needed to vent. I needed to know I was not alone. Writing became a solace for me.

I know I am not alone.

You are not alone.

We are together.

There are thousands of us scattered across the world, just as scared as the next one. But we are not alone. We are not alone.

But you can’t jump the track, we’re like cars on a cable,
And life’s like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
and breathe, just breathe
woah breathe, just breathe,
Oh breathe, just breathe,
Oh breathe, just breathe.

~Anna Nalick, Breathe~

Today I breathe. In. Out. Just as before.

But everything around me, in me,  has changed.

I have changed. For the better, I think.

Today I am stronger. I am braver. I am not stuck in that moment. I move forward. Not because I have to but because I want to do so. Because I choose to do so.

I am far from perfect. Far from June Cleaver.

I am me. Unapologetically me and unapologetically me as a mom. I do not worry about what I am doing right or wrong according to others. I don’t worry about what she says or she says or she says. What she says does not matter. All that matters is if my daughter has laughed with me today. Has she felt loved? Has she been hugged? Is she warm? Clothed? Fed?

Our house is a wreck. My kids watch TV. My kids eat junk food occasionally. I do too. We are imperfectly perfectly us.

And for that?

I am grateful.

So I breathe. I exhale. I move forward as an empowered unapologetically me.

The day I gave birth to my daughter four and a half weeks early was the same day I gave birth to a stronger me.

It just took me nearly five years to really figure that part out.

(This post is part of the March of Dimes Blogger’s Unite to Fight for Preemies event. You can learn more about Prematurity Awareness at the March of Dimes website.)

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