LTYM Wrap Up: The Truth Will Set You Free

For me, the early years of motherhood were isolating.  Being a stay-at-home mom definitely attributed to my feelings of isolation, but adding to that was Marie’s scary medical condition that I didn’t’ really understand.  My mind was clouded, which I thought was my new normal.  Turns out, I was probably suffering from PPD with a pinch of PTSD.

And I said nothing. 

I took a shower every day, put on my makeup, and then pretended that everything was fine. 

For eight years, I harbored feelings of guilt and confusion and self-hatred.

Until I let it all out at Listen to Your Mother in front of almost 300 plus people.

Speaking my truth was such a powerful experience; I’m still having a hard time putting it in words.  It felt exhilarating to go up there and share my story, but it was scary to feel that exposed.

Here is my exhilarated/scared face.

But most of all, I felt freedom - freedom from carrying this burden around with me.  I could almost see the energy of those words swirl up and out of me.

The freedom cracked me wide open.  In that space where guilt and fear dwelled, there is now room for positivity and light.  I am not afraid anymore.  I let go of fear – fear of being judged, fear of not being enough – and invited acceptance and peace.

Thank you again, Angela, Jessica, and Angela for this incredible opportunity, and thank you, Ann Imig, for creating a space where mothers can feel connected and support each other.  It has changed my life.

Here is the piece I read at Listen to Your Mother:

I held my breath, sharp and heavy in my chest.  My daughter sat calmly in my lap on the examining table, and I could feel her body, soft and delicate from low muscle tone.  The neurosurgeon reached for the dreaded measuring tape to measure the circumference of her head.  

 Every time I saw that measuring tape, I could feel the bile churning in my stomach.  We had been coming to this office for the better part of my daughter’s short life, all of eighteen months, and this appointment would determine whether or not she would need to continue under the care of a neurosurgeon or if she would be discharged.  I could feel the anxiety prickling my skin, but I clenched my jaw and focused on my daughter so she couldn’t sense that I was worrying.  My gaze was fixed on her head and then darted to the doctor’s stoic face; I searched for a clue - a grimace, a smile – anything that would reveal our fate. 

“Mrs. Rawlings,” he said indifferently, “based on the MRI and that her head growth has followed the same curve, your daughter no longer needs to be seen by me.” 

I exhaled for the first time in over a year.  I tried to wrap my mind around this closure, but the whole experience just seemed surreal. 

I never thought my journey into motherhood would include a side trip into a neurosurgeon’s office.  Just over a year and a half ago, I left my job as a junior high teacher (or fled, as some people might say, some people being me).  I was ready to experience my perfect natural birth plan perfectly.  I was ready to dive into my new role as a stay-at-home mom with all my lovely expectations of bliss.
 

But that did not happen.  I had an unplanned C-section and a baby born with a mysterious condition called macrocephaly, which is a medical term for a big head.  While I lay on the operating table, the doctor uttered, “Uh, do not be alarmed, but your daughter’s head is shaped like a banana since it was too big to fit through the birth canal.” 

What?!  Not be alarmed?!  If I wasn’t so drugged up on pain meds and exhausted from fifteen hours of labor, I might have had a more verbal reaction.  But I felt defeated.  This wasn’t the way it was supposed to go.  I come from a long line of perfectionists, and this, quite frankly, was unacceptable. 

As a perfectionist, I labored under the allusion that I could take command over my world.  When I wanted to accomplish something, I would zealously research the best path, follow each step precisely, and reach my goal.   

I approached life as a sailor charting her course; with the right map, I could get anywhere without fail. When I pulled my boat into the dock after successfully arriving at my destination, I felt invincible.  I was in control. 

Yet nothing made me feel more out of control than a failed birth plan and a baby with a scary medical condition.  Navigating through the medical and special needs systems was not my plan.  In my daughter’s first year of life, terms like hydrocephaly, shunts, and cerebral palsy were thrown around during her numerous doctor and physical therapy appointments.   

The responsibility of shepherding this precious little being through a situation I knew nothing about made my stomach and chest hot with anxiety.  I held my breath for the next eighteen months.I could feel myself cracking under the pressure.  Not only was I scared about her prognosis, but I was exhausted and distressed; my reality looked nothing like my fantasy, and in my book, that made me a complete failure. 

In these dark moments, I knew I had two choices: sink into darkness.  Or put my feelings on the shelf so I could focus on making sure my baby received the help she needed. 

It didn’t seem like much of a choice. 

So it began, a shift that happened with one little choice – to be present.This was difficult since being present meant I could not wade around in my worries; yet all I wanted to do was let go, jump in, and drown in the sea of my anxieties, but who would sail the ship safely to shore?I dutifully stayed at the helm, white-knuckling it the whole way. 

That day my daughter was released from her neurosurgeon, I wept.  Her ship was now safely docked.  The fear that I suppressed worked its way up, and I let out a loud wail from deep down in my belly.  I became unglued. 

I reached out to my therapist and made an emergency appointment for the next day.  There wasn’t much accomplished during those early visits, but eventually I began to work through the guilt that I did not enjoy my first year of motherhood.  I felt like a horrible mom.  I mean, who says that?!  Who says she did not enjoy her first year of motherhood?! 

I began to drift, my boat bouncing in the thrashing seas as waves of self-doubt and self-hatred overcame me.  How could I fail at creating my utopian version of motherhood?  How could I fail this perfect, little person as her life was just beginning? What I eventually would begin to learn is that ego and its expectations are what present the conflict of a peaceful life.  Once the ego lets go, reality can be accepted.

Luckily, I had little ego left.  It pretty much went out the window during the birthing process and nursing and being pooped on and spit up on.  But obviously, the shred of ego that was left was hanging of for dear life of that perfect picture of motherhood. 

With the same grit and focus I used to deliver my daughter safely through her struggles, I steered my own ship through the choppy waters. 

It was not easy to give up control of charting the flawless course, and it was not easy to accept anything less than my ideal vision.  But releasing control and perfection and dwelling in the moment offered a glorious freedom that I had never before experienced.

It changed me – I am now closer to the person I always hoped to be – kinder, more compassionate, less anxious. 

In the chaos of the unexpected hurdles of motherhood, there is a gift that lies on the other end of the struggles — the knowledge that the power of presence is a far better focus than the elusive quest for perfection. 

Five Years Ago . . .

 Marie turned five this week. I cannot believe it. I honestly cannot believe it. I’m not one to get all mushy when The Babes get older; it’s more sweet (no diapers!) than bitter (there’s nothing quite like rocking a new baby). So I have a lot of feelings about this, but because I am manning the ship alone this week, and I am taking Marie on a road trip this weekend, I have not yet had time to think about all this. The train doesn’t drive itself, you know?

It will probably catch up with me at her preschool graduation ceremony.

Anyway, I liked this post I wrote last year when Marie started preschool. She’s come a long way. I read this, and I can’t believe that was us five years ago.

____________________________________________________________________


Suck it, Marge!

Dear Marge:
This is Marie’s Mom, and if you don’t remember, she was a former patient of yours. She was diagnosed with macrocephaly at birth. When I was told that that was a big, fancy word for a big head, I didn’t think it was a big deal. The implications of that, along with a low tone diagnosis at 4months were when I realized that this was a big deal. That and the pediatrician recommended that she see a neurosurgeon for regular visits were a clue that something was not right. We discovered that she extra fluid around her brain (hydrocephaly) and were not sure if she would need a stint to drain it. We were not sure if she would have cerebral palsy because of her low tone. It was a very stressful time. At 9 months of age, she qualified for services. And that’s when you entered the picture as her first physical therapist.

She used to cry whenever you came over to work with her. You seemed to lack that gentleness that is helpful, if not necessary, to work with babies. It was hard for you to accomplish anything with her because she had a hard time not crying with you. You also asked me to leave the room since you attributed her crying to my presence, not your roughness and general crabby demeanor. Being a new mom, I stood in the kitchen peaking around the corner, watching my poor baby girl crying while you tried to execute your exercises. I endured that and a lot more because I was desperate for her to get better. However, what was most memorable about you was when you told me she would be destined to be a leaner because she would never have enough strength to always stand straight and that I would be lucky if she walked without braces and by the age of two.

Well, Marge, that little baby is now three years old. As she RAN into her classroom the first day of preschool, many things came to mind. Most were the normal things a mom of a “regular” kid would be thinking: I was so proud of her for being independent and brave. She looked so cute and happy. But then another thought ran across my mind, and it was, “Suck it, Marge!” I say suck it because here was this baby who you said wouldn’t walk until she was two and possibly with braces and she RAN into that room. And you know what? She RUNS everywhere, and she CLIMBES up the ladder to go down the slide. Oh, and she JUMPS, too! So, Marge, be careful what you say to new moms because it could wind up biting you in the ass. I understand you needed to be honest about Marie’s condition, but perhaps you could take some professional development classes on bedside manner because your ambivalence about her condition was heart wrenching to hear. And if I could, I would forward my therapy bill to you because you did a lot of damage with those comments and telling me to leave the room because my baby was crying because of me. She was crying because of you and your negative energy.

So, Marge, suck it! My baby girl is in preschool and doing great! No thanks to you, of course.

Yours truly,
Marie’s Mom

P.S. Tell Noelle her note about Marie’s “anti-social” behavior is coming soon!

Into the Vault

If there’s one thing that I have learned about myself since becoming a mom, it is that I am The Queen of Putting on a Brave Face. I don’t really process difficult moments until waaayyy after the fact. It’s not that I don’t believe I should not show emotion in front of The Babes. That’s not it at all. However, in a crisis situation revolving around a Babe, I believe it’s best to not cry and become all frantic. Chances they are already scared and/or confused so I don’t want them to have to worry about me, too. I want them to feel safe to express what they are feeling in that moment.

I have had great practice with this for the whole first year of Marie’s life. She was diagnosed with macrocephaly (big head) and low muscle tone; we weren’t sure if she had cerebral palsy, hydrocephaly, or if she would need a shunt. She did need physical and occupational therapy. During this time, I soldiered on. I didn’t think about how I am going to deal with this. My objective was clear and concise: Do Whatever It Takes To Help Marie. If that meant driving her to Children’s Hospital that was 45 minutes away every two months, I did it. If it meant taking her to physical and occupational therapy twice a week, then I did it. If it meant that I had to take her to get an MRI, I did it. Lonnnggg story short, she was eventually discharged from her neurosurgeon, and she was fine.

I was not fine.

As Willeta from Divine Secrets of the Ya-Ya Sisterhood says, “Everyone’s ticket comes to.” After lots of nights waking up only to cry and dry heave, I eventually broke down and spent a lot of money working through my feelings with my very gifted therapist. (Money well spent if you ask me).

I processed my feelings, put all the paperwork (about 4 inches thick), and placed it in The Vault. Never to be opened again. Or so I thought.

At Marie’s four year old checkup, the doctor said her tonsils were large. I eventually took her to see the same ENT as Thomas went for his ears. He asked me a bunch of questions regarding her snoring (like an old man) and apnea (no gasping, usually just start breathing again). Here’s how that conversation went with that ass hat.

So we got the sleep study done to determine whether it was obstructive or central sleep apnea, which is related to low tone and/or a rare brain disorder. It was scary watching her get all those “stickers” with “fun-colored wire” attached to her knowing the objective of the test. And it was even worse when they took them off. Marie was so brave. I was brave, too, because I was not going to let her see my nerve endings becoming frayed. The sleep study did show it was a mix of obstructive and central, and required that I needed to see a Sleep Study Specialist. But of course, being a specialist, I had to wait weeks and weeks. So I took Marie to see her Former Neurologist. And then to another ENT. And then finally to the Sleep Study Specialist.

All of that required me to open The Vault and get out all her therapy report cards, MRI scans, ultrasounds . . . and all my feelings were still right there. But being who I am, I just powered through each of those appointments.

A few weeks ago, my ticket did come to. I broke down and cried. It was so stressful to think that an issue I thought was resolved had reared its ugly head. But I also was surprised by how far I’ve come since those early days. Putting on that armor and go to battle for your kid is not easy, but I feel more confident in my role Child Advocate.

So, although, this story does not have a definite ending, it has taken a better direction. I closed my account with That Asshole ENT and kicked his insensitive, pompous ass to the curb. The Former Neurologist and Sleep Study Specialist said everything looks OK and that maybe even getting her tonsils out won’t solve apnea this mild. And the new ENT, he’s incredible. He offered a nonsurgical option first to see if we can shrink her anoids and tonsils. All of this is TOTALLY CONTRARY to which That Asshole ENT said which was get the tonsils our right away. Oh, and he never even mention all that business with The Sleep Specialist, business HE ORDERED! (I wonder if the three piece suit worn by That Asshole ENT is directly related to his call for surgery. Ironically (or maybe not), the new ENT, wears Dr. Seuss ties and button down shirts. Just a thought).

So that’s what we are doing. It’s easy to second guess myself as a mother. But my instincts to get away from That Asshole ENT proved to be right. So I am hanging up my warrior gear for now and trying to catch my breath.

Thanks for letting me vent about this. I needed to get this off my chest before The Vancouver Vacation. Now I have room for all the anxiety for this adventure.

So, Friends, what did you follow your instincts on that turned out to be spot on?

Suck it, Marge!

Dear Marge:

This is Marie’s Mom, and if you don’t remember, she was a former patient of yours. She was diagnosed with macrocephaly at birth. When I was told that that was a big, fancy word for a big head, I didn’t think it was a big deal. The implications of that, along with a low tone diagnosis at 4months were when I realized that this was a big deal. That and the pediatrician recommended that she see a neurosurgeon for regular visits were a clue that something was not right. We discovered that she extra fluid around her brain (hydrocephaly) and was not sure if she would need a stint to drain it. We were not sure if she would have cerebral palsy because of her low tone. It was a very stressful time. At 9 months of age, she qualified for services. And that’s when you entered the picture as her first physical therapist.

She used to cry whenever you came over to work with her. You seemed to lack that gentleness that is helpful, if not necessary, to work with babies. It was hard for you to accomplish anything with her because she had a hard time not crying with you. You also asked me to leave the room since you attributed her crying to my presence, not your roughness and general crabby demeanor. Being a new mom, I stood in the kitchen peaking around the corner, watching my poor baby girl crying while you tried to execute your exercises. I endured that and a lot more because I was desperate for her to get better. However, what was most memorable about you is when you told me she would be destined to be a leaner because she would never have enough strength to always stand straight and that I would be lucky if she walked without braces and by the age of two.

Well, Marge, that little baby is now three years old. As she RAN into her classroom the first day of preschool, many things came to mind. Most were the normal things a mom of a “regular” kid would be thinking: I was so proud of her for being independent and brave. She looked so cute and happy. But then another thought ran across my mind, and it was, “Suck it, Marge!” I say suck it because here was this baby who you said wouldn’t walk until she was two and possibly with braces and she RAN into that room. And you know what? She RUNS everywhere, and she CLIMBES up the ladder to go down the slide. Oh, and she JUMPS, too! So, Marge, be careful what you say to new moms because it could wind up biting you in the ass. I understand you needed to be honest about Marie’s condition, but perhaps you could take some professional development classes on bedside manner because your ambivalence about her condition was heart wrenching to hear. And if I could, I would forward my therapy bill to you because you did a lot of damage with those comments and telling me to leave the room because my baby was crying because of me. She was crying because of you and your negative energy.

So, Marge, suck it! My baby girl is in preschool and doing great! No thanks to you, of course.

Yours truly,
Marie’s Mom

P.S. Tell Noelle her note about Marie’s “anti-social” behavior is coming soon!