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The Scorpion Tale of Perinatal Mood Disorders

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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?

 

 

 

Confessions of a Cleft Palate Mama

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As an active blogger and Social Media participant, I choose to live my life out loud. In choosing to live my life in this manner, I open myself and my life up for comments and questions. Sometimes, these comments and questions hurt. Sometimes they are meant to cut. Other times, they are not meant to hurt but are instead posed with the best of intentions. The latter often catch me off guard. Such a situation occurred this past week. Instead of dashing off a quick and angry response, I called a friend and nearly ended up in tears as I described the situation to him. I let it sit over night as I thought about the best way to respond. Then I took to Twitter to vent about the situation. Once I took to Twitter, I realized I was not alone in my very justified reaction to the inquiry. Instead of a private response, I choose to handle this in a public manner. There are many other mothers of children with birth defects in this world and all of us battle the same thing deep down inside. All of us are consumed by guilt.

The birth of my second daughter at 35 weeks and 5 days occurred 42 hours after my first contraction. I pushed twice and her screams filled the air of the delivery room instantly as she emerged into my nurse’s waiting arms. Placed on my chest, she continued to scream and writhe about as most newborns do. At first glance, she appeared healthy. All fingers, all toes, you know, the important stuff. When she screamed however, her mouth gaped at the top where her palate should have been. I blinked and tried to check but blamed it on exhaustion. I tried to latch her onto my breast to nurse but it didn’t work. After several tries, on and off, her screaming, me almost in tears, we requested the Lactation Consultant.

The Lactation consultant came in, slipped on gloves, and swiped our 30 minute old daughter’s mouth. “She’s got a cleft.” A swarm of activity buzzed about our room and suddenly there I was, alone, in bed, freshly delivered and still numb from the epidural. No one to talk to, no one to explain to me what was going on. The thoughts started. I knew of a cleft. I knew it meant something was missing. But I didn’t know the cause. I didn’t know why. Then I thought. I thought some more. What had I done wrong?

Early in my pregnancy, I was unable to take prenatal vitamins because they induced severe nausea. Forced to choose between taking the vitamins or not eating, I chose to not take the vitamins. I even tried taking them at night but it was a no go. My depression from the birth of our first daughter also played into the decision to not discuss this nausea at length with my OB. Nausea continued well into the 6th month of my pregnancies. By the 6th month, though, I still was not taking my prenatals. In my depression delusional mind, I even wondered if it would truly affect my growing child’s well-being.

At six months pregnant, however, even if I HAD taken my prenatals, it wouldn’t have mattered. Most clefts form between 4-6 weeks, well before a woman is even aware of her pregnancy. Many clefts are even impossible to link to a specific cause. Our daughter’s specific cleft, a bilateral complete cleft of both hard and soft palate (meaning essentially, she had NO PALATE whatsover), was associated with a condition called Pierre Robin Sequence (pronounced Pea-air Roh-ban). Her jaw was also recessed, her tiny tongue was floppy, and her airway was narrow. In the 1920’s, PRS babies had a slim chance of survival. Today, however, the rate of survival is very high and surgery is available to correct these issues.

I was asked, several times, by several doctors, if I had taken my prenatal vitamins. I lied. Yes, I know I shouldn’t have lied. I should have been honest. But between depression, PTSD, and the guilt now whirring around in my head, rational behaviour escaped me. My partner didn’t even know I hadn’t taken my prenatals until I confessed while in labor with our son. (Hell of a time to confess, huh?)

Bottom line: I BLAMED MYSELF FOR MY DAUGHTER’S CLEFT.

Yes, rationally I know now I am not to blame. There is no family history of cleft. No associated genetic syndrome along with her PRS. It formed well before I could have done anything about it and even Mothers who take folic acid religiously still have a risk of giving birth to a child with a cleft. I know clefts are nearly impossible to see on a standard u/s unless you are looking for them specifically. Intellectually, rationally, I know all of this. and yet, the guilt consumes me. She grew inside me. She grew imperfectly. Logically I am to blame. If she is imperfect, there is something wrong with me. I failed my daughter before she was even born. I failed at motherhood a second time before I even held her. I FAILED.

Mothers of children with birth defects, with special needs know what I am talking about. We feel this every day. We fight like hell to not let this guilt eat at us. We fight against stigma, misinformation, judgment, and ignorance. We live with the stares, with the internal guilt which threatens to rip us apart every second of the day. We ferociously fight for our children so they may have a chance to live a normal life. A life of which they are completely worthy.

My daughter is nearly 6 years old now. She is beautiful. She is intelligent. She is determined, obstinate, and full of perseverance. She is happy. She is thriving. She is PERFECT. She is LOVED.

It doesn’t matter what I did or didn’t do all those years ago. I cannot go back in time to change anything which happened. Even if I could, I would not want to go back in time to do so. Because if I did, I wouldn’t have a daughter who has taught me more than anyone else in my life about the importance of hanging in there, fighting for even the simplest things (like speech, breathing, and eating), or that the most important thing in life is to be happy and keep others laughing right along with you.

The importance of seizing teachable moments

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Today, Janis over at Sneak a Peek at Me blogged about Teaching your Children about Differences. Sadly, this post is rooted in an experience she and her son were affected by today. During a trip to a local zoo, several children stopped and stared at her son. Their parents did not seize this opportunity to teach their children about differences. So she’s blogging about it to bring attention to this serious issue.

I agree with her.

As the mother of a special needs child, I have had to field questions about my own daughter. But my daughter’s issues are not clearly visible to those around us. So the challenges I face are different. It’s when my daughter speaks that we get questions. You see, she was born with a cleft palate, recessed jaw, and a floppy tongue (glossotopsis). This is officially known as Pierre Robin Sequence in her case because there are no other genetic syndromes along with her diagnosis. She’s had six surgeries, the first one at just 9 days old, the most recent one just over a year ago.

Her speech, while improved, is far from the normal expected speech. We have to constantly remind her to speak slowly. To enunciate. And yes, my four-year old KNOWS what the word enunciate means. And I know way more about speech therapy than I ever imagined I would when I started down Parenting Lane.

Our daughter tries her best. She does get frustrated because she’s terribly bright but more often than not, her ability to use her voice and words gets in the way of what she wants to share with us. She gets worn out and doesn’t want to try. Sometimes it’s hard for us to understand her. And sometimes it’s hard for others to understand her. She worries about being teased. And it happens. Someone asks her a question, they can’t understand the response, and voila. We get a question.

While it’s not the same as Janis’ situation, I understand the basic emotions. Immediately I worry they won’t understand or that they’ll make fun of her. The only place I’ve had to field an insensitive comment about her condition has been from a fellow kid in her special needs pre-k class. And I answered it appropriately. I seized it as a teachable moment by explaining to this child that issues with speech were what Charlotte needed help with because of the way she was born. But that she was trying her hardest at making her speech better each and every day. The child nodded and went back to his coloring. Charlotte shot me a grin (she had overheard the child’s question) and went back to her coloring as well.

It is important to us Charlotte understand how she was born. That she know we are not ashamed of it and she can do whatever she wants to do with her life. We celebrate the smallest of achievements – like this year – on her fourth birthday? She blew out the candles all by herself for the first time EVER. The first time she blew up a balloon? Squeals! Bubbles? Lots of squeals!

She did not start talking until she was nearly two years old, maybe even older. We talk with her a lot about her speech and why she has problems with it. She openly shares with us when she’s frustrated with it and we work to heal those frustrations together. She’ll be starting a regular pre-k program later this summer and is very worried about other kids making fun of her. I’ve been making sure to sit down with her to talk about her options if that happens. She’s getting very good at asking questions and opening up with us about her worries and concerns. I’m happy to see this development because it means I’ve done my job right in being open with her about what’s going on in her life. I know there are more battles down the road. Right now though, I’m building the base of a very strong building for my daughter. I want her to stand tall no matter what comes her way. I want her to know she’s perfectly okay the way she is because GOD made her that way. That we love her no matter what.

And if we see someone different out in public and one of the kids say something, we are down at their level immediately, explaining to them that GOD makes everyone different, that some of us may need extra help but that’s okay. We tell them we should love everyone the same, be polite to everyone, and that pointing and staring is not okay. We tell them that people who are different are still people and want to be treated with the same compassion, respect, and dignity as everyone else. So far the kids are doing great with this. I hope this is a lesson they carry with them for life and infuse into their own children’s lives. Because acceptance and compassion are half the battle in being the bigger person.