Thursday, September 23, 2010

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?


lindsey said...

You are an amazing mother! Just remember that.
To put on such a brave face for your daughter is a hard task. Bravo!
I have always listened to my gut instinct and its always been pretty {spot on}. Nothing compared to your extreme cases but with colds and such.
It sounds like you did the right thing.
If you can't vent on your own blog, where can you vent!? Were always here for ya :)

Moonspun said...

Maybe one of the best strengths we have as moms is to know when to open and close the vault. Good for you for getting your armor on.
Have fun in Vancouver.

Fiorella said...

Amazing story and insightful observations. Your children (and husband) are lucky to have you!

Mommy on the Spot said...

Fiorella, thank you so much!

Moonsput, so true!

Lindsey, thank you bunches!!

purplume said...

You are brave. I am sorry you have had these challenges. You are very strong.
That is how I survived as a nurse, by putting on a brave face and crashing later. It is easier to do with patients who aren't your loved ones.
Time after time I have seen a mother's instinct's be so right on. Professionals can add to her data base and friends can support her, but the one who loves knows where their loved one is at.