The Definition of Outrageous

A few weeks ago I was reading to my older kids from Brene Brown’s latest book Daring Greatly and shared with them something Brene had said at her book launch I attended here in Houston: She always asks her family’s permission before sharing their story.

insert imaginary light bulbs over my kids’ heads

“Wait! Back up! She aassssskkkkssss for permission first? Gee, mom. Maybe you need to take a page from her book.” Crap! I clearly didn’t think that one through first. I understand both sides (me wanting to share the story vs my children NOT wanting me to share their story) and am wading amongst the mucky waters of good parenting while being a good story teller. My compromise has been to furiously write down Allen and She-Who-Will-Not-Be-Named’s stories and try to ask them for permission when we’re maybe shopping… or at Disney…. or when they want to go out with friends…. Or when the memory of the blog-worth event has faded and the emotions aren’t as raw. I, however, am not extending this compromise to the younger kids for several reasons with the biggest being they won’t understand what it is I’m asking.

Speaking of not understanding, I have a Jessi story to share. At the beginning of school, we warned her teachers she might tell outrageous stories to gain attention. Tall tales during an assignment are usually her favorite, because she can get the wide-eyed expressions (adult reaction) while keeping the attention on her (especially when her tall tale involves her being a victim) while simultaneously getting out of her work (her goal). What I neglected to tell the teachers was our definition of outrageous.

The first email we received simply asked, “What does your husband do for a living?”

Hello Mrs. M,

Thank you for asking what my husband does for a living. He’s active duty Coast Guard and is currently a vessel inspector. This past year he was in LA on a small cutter that rescued boaters and did fisheries law enforcement. Before that he was in TX on a large cutter that rescued migrants and tried to catch drug runners.

I suppose that COULD sound a little far fetched coming from a child who has been labeled an outrageous storyteller. I continued to type a list of REAL events and elements that accurately describe our family, which went a little like this:

  1. She was born in Alaska, but is part Hawaiian and her birth father sends her a box of macadamia nuts every Christmas.
  2. She lived on an island in Alaska and frequently saw bears, whales, sea lions, puffins and eagles. The eagles would sit in the trees outside of our house and emit their screams when we’d get in the truck.
  3. She’s flown on C-130s to Anchorage where we’d go to restaurants and shopping at the mall. She saw a volcano erupt during one of those flights.
  4. She’s been to Hawaii and hula danced on the beach. She also listens to her birth grandmother’s music CDs at night to keep her Hawaiian culture alive.
  5. She has 2 brothers who are deaf.
  6. She has 1 brother with magnets in his head and he can hear with little computers on his ears.
  7. She has a brother who has a button that mom hooks a tube to and pours milk into his stomach.
  8. She has a brother whose head is really small and will never get bigger; even as his body grows, his head will always be small. Mom calls him “Little Head”.
  9. She has a grandmother who is a veterinarian and she’s helped with surgeries and isn’t too scared of the blood.
  10. Her house flooded 2X .
  11. She has a Kodiak grizzly bear on the wall at home.
  12. She once caught a halibut while whales were breeching around the boat.
  13. She went with her family to Alaska to adopt a little boy, but he had to go back, because his RAD was more intense than hers.
  14. She fished for salmon all the time in Alaska and caught one with her bare hands.

I have no doubt that poor teacher was wide-eyed and wondering where in her job description were statements related to having a RAD student, especially one with the adventures like Jess. In the end, it was easier to ask the teachers to email if they felt a story needed validation. I want them to be able to teach their classes rather than spending too much time verbally fact checking a RADling.

Video for teachers on RAD

None of this, by the way, is told to you when they place that precious little toddler with the ringlet curls in your arms. There is no Magic 8 Ball to predict the future, but if there was one 8 years ago and it was accurate, I imagine it would have said, “Buy wine NOW”.

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Did I ever tell you…..

… that I wanted to be a pediatrician?

I had every intention of going to medical school when I was in high school. I had the type A personality who craves organization and high pressure situations. I wanted to help children. I had the knowledge-seeking drive to make a difference.

westofhomesouthofsanity NG tube

Well, it turns out I get to exercise my best qualities, but not with an M.D. behind my name. And without the pay. Instead, fulfilling my high school goals has come in the form as a parent of a survivor.

Most of you know my little guy, Nick. What you may not know is that Nick and his twin brother were born to a 13 year old mother. Both children were listed as failure to thrive repeatedly and experienced many setbacks in their first 2 years of life. It is suspected that the boys’ medical issues primarily stemmed from a virus their birthmother contracted during pregnancy called cytomegalovirus or CMV.

When we brought the boys home with their laundry list of diagnosed medical conditions, we also brought hope into their lives AND ours.

Hope is a chance to struggle ~ Brene Brown  

The latest form of struggle for Nick is his lack of weight gain. His poor eating habit isn’t news to me; his recommendation from his rehab specialist a year ago for a feeding tube was expected. What wasn’t expected for my type A “must be in control” personality was how emotionally exhausted I found myself while sitting in a waiting room to discuss a feeding button for my CP kiddo. I also didn’t expect the breakdown I had in the exam room – major tears and all. I wasn’t given notice on how I’d feel like I’d failed this child, because I’d been unable to help him gain much needed weight. It didn’t matter that I had stacks and stacks of research on CMV, CP, microcephaly and feeding tubes in my office, that I knew there’s a medical reason behind the nonexistent dot on the weight/age growth chart.

Reality set in quickly and I began to panic from fear. How would I handle Nick’s fear of the procedures, all things he can’t comprehend? This fear, this intense feeling of being scared, vacillated with my knowledgeable brain to a point where I wanted to shut down. But, I knew I couldn’t.

As Nick’s little head found a safe, comfortable spot against my chest in the exam room, I knew I had to stay on top of the game. I would make the best, informed decisions for his life. His life that is filled with frustration, daily challenges, pain, happiness, curiosity and unconditional love.

We will struggle with Nick, because we know there is hope.

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our parenting ABCs

Living on Kodiak Island in Alaska for several years meant many flights on ERA Alaska. Don’t picture a jumbo jet with several flight attendents and a massive amount of metal protection. Imagine a small Dash 8, one flight attendent, about 40 seats, less metal. The Dash 8, according to Wikipedia, features extreme short take-off and landing performance. Anyone who has flown in and out of Kodiak is familiar with the enormous mountain at the end of the runway……

My first ERA flight alone to Anchorage was impending and a dear friend loaned me a book from her home library, a book by Susan Elizabeth Philips and one that “won’t make you think too hard.” A book that began with a widow facing her husband’s untimely death in an airplane crash… That was not very comforting as the Dash 8 climbed into the windy, turbulent air that always surrounds Kodiak.. “What kind of friend gives an anxious flyer this kind of book?” I thought as the plane shuddered and sharply rose and fell on ascent. “I think she likes me. I thought she liked me. Maybe she doesn’t. Maybe she didn’t remember how this book opens. That’s what this is! She just forgot what happens first in the story. Surely she wouldn’t add to my nervousness willingly. Should I revisit our friendship? Are we really friends?” This was the kind of neurotic head chatter I bounced around until we had found smoother air and I could return to the lines in front of me.

She was a good friend, STILL is a good friend. She was simply loaning me a book and I picked apart our friendship foundation over a fictional character dying in a fictional plane crash….. Yes, you can add this to the list of reasons my children call me “mental.” I embrace that personality descriptor, though.

Being “mental” has led me on multiple searches for new information on how to parent, because let’s face it, having 5 children with a wide (think rainbow arch wide) range of abilities isn’t covered in one book. One of my favorite go-to books is Dr. Kevin Leman’s Have a New Kid by Friday in which he explains the importance of Attitude, Behavior and Character in your children and how to parent effectively to accomplish these ABCs.

west of home south of sanity family

Our family is built on having the right attitude. We may not always want to show the good ‘tude, but at least ONE of us will encourage the others to get to that happy place quickly. (OK, so I may throw in a remark like “do it or else,” but they get there!)

Proper, functioning behavior is also vital to a large family. We let the kids be loud, silly, obnoxious even, at home, but when we’re in public, by golly your little self will maintain control and show good behavior. I’ve had 6 hour flights end with the passengers in front of us comment when they gather their luggage from the overhead bin, “I had no idea you had FIVE children behind me! There was no kicking my seat or screaming or anything!” I certainly hope not! Now, I’ve already wiped the sweat off my forehead and she has no idea how tired my arms are from keeping those legs from kicking her seat, but they were taught proper behavior and it was worth the sweat and work.

As for the character in the ABCs, well, we’ve got plenty of character! Seriously, though, my family has developed a level of character that only comes from up-close and personal knowing. It also comes from being shaped by our daily experiences.

Recently, one of my children was faced with an unfortunate situation that tested her core ABCs. It was certainly not a situation I would have believed I’d need to parent. Ever. To watch your child suffer, be it physical or emotional pain, is heart wrenching. As a mom, I saw the red flags creeping their way up the flagpole. I saw the signs of withdraw, the hints of sadness, the “pep in her step” gone. This was no longer my child who could shake off teen issues. This was my child who was struggling to wrap her brain around why she was targeted. Why, ultimately, she was being psychologically bullied.

Psychological bullying happens in a number of ways and this attack on my daughter began with a vicious rumor that spread to social exclusion. According to Positive Psychology News, social exclusion is experienced as pain in the most primal areas of the brain. They explain it can hurt as much as being punched in the stomach.

I am a Brené Brown follower and applied her strategies for staying authentic and knowing WHO you are when backed into a shame corner. We picked apart this terrible experience to label why it happened and what possible responses could be used internally as we, mother and daughter, walked away with higher levels of resilience.

Would I wish this on my daughter again? Absolutely NOT! Am I grateful she experienced it at all? In some ways, YES! As devastating as it was initially, my beautiful, intelligent, talented daughter now carries this higher resilience along with an immense capacity for courage and compassion. She rose above the bullying and remained AUTHENTIC. She sharpened her ABCs.

My daughter is my HERO! And that’s NOT me being “mental,” it’s me being proud.

5 facts about Nick:

he loves NASCAR
he will hug you
he screams – ALOT
he fixes mac-n-cheese
he is severely mentally retarded (MR)



Nick is my daily challenge. Some days he wakes up and is as happy as a hermit crab being released back into his ocean, and we sail through with smiles. Other days, the only sound emanating from our home are Nick’s screams and our frustrations. He screams about pain, but also about transitions. “Time to brush your teeth” WAAAAAAA! “Time to get dressed” WAAAAAAA! You get the point.

Added to his preferable mode of communication (screaming instead of making his mouth form words or use his hands to sign) is his extreme MR. Simple conversations cannot be exchanged with him. “How was your day? Did you play with your friends?” Every time the answer is a flat, “Yeah.” It would be “yeah” if we asked, “Did you fly a space shuttle to the moon and simultaneously find the cure for cancer?” 

It is overwhelmingly frustrating at times. And it’s not just that he can’t answer “How was your day?”, it’s that this is reality. He will NEVER be able to answer “How was your day?” He can’t think or understand that abstractly. We all find ourselves vacillating furiously between celebration for moments where “he gets it” and extreme despair for what this child’s future holds.

This week on our way to Nick’s PT, OT and speech sessions, Allen and I tried to explain to Nick to pull his shirt up over his left shoulder. He will let it slide off and his tiny body will eventually start to make it’s way through the neck of the shirt. Part “I don’t care”, part left-sided hemiplegia with his cerebral palsy. The situation was ridiculous. Allen and I are in the front seats, I’m trying to drive and look at Nick through the rearview. Nick is in the third seat, unreachable. “Pull your shirt up! Nooo, the other side. The OTHER side Nick.” This went on for at least 2 minutes and when Nick finally performed the requested task, I cheered like a crazy woman and assigned a name to the task, “Good job FIX SHIRT!”

Nick started with speech that morning and immediately launched into his “I’m MR therefore I can do what I want” routine with his rag doll impersonation. Great….. Yet another professional who will not like my kid because of his behavior….

As a parent, you take ownership of your child’s behavior. Society says that he must be the way he is because of how you’re raising him. Society doesn’t stop to ask, “Is this child adopted? Did this child suffer imaginable abuse and trauma that may never be overcome?” Society doesn’t get down on the child’s level, attempt to look him in the eye and ask, “What do you want? How can I help you?” Society simply gives the proverbial hairy eyeball and turns away thinking, “That mother can’t make her kid behave. SHE must be doing something wrong.” 

Putting it in raw terms, society places shame on why Nick is the way he is. Nick doesn’t know shame (either that or he’s followed along with me during my e-course on Ordinary Courage with Brene Brown), so he’s not at all worried. By default, the shame falls to us as the parents and probably a little to the other children. We’ve learned, though, to take a Nick-led approach and just let the disapproving glares roll off our backs as best we can. What those narrowed-browed people don’t realize is that this world without Nick would be a world without simple accomplishments, without a day full of hugs and slobbery kisses, a day without grace. Carrie, from daysofwonderandgrace.blogspot.com, shared this relevation recently:

…the invisible attributes of God may be more clearly manifest in the lives of people with disabilities and those who surround them because it is so patently obvious that grace emanates from God, not people. 

Back to the story. Allen and I had errands to run and when we returned, I quietly slipped into the pediatric therapy room and watched. The OT was bringing out a game Nick recognized, so he was willing and excited. During the game, she methodically and gently held his right hand while encouraging him to use his left. 

Pause, as his brain tries to tell the left hand to move. My breath catches and I try to hold back the tears of this reality for me. I know he can use that left hand (he was reigning champ last weekend on Mimi’s Kinect system in boxing!), but to see him struggle reminds me of just how much his CP affects his life. To see him struggle reminds me of the degree of MR he lives with.

And then he made a motion, may have taken all of a second, that makes me smile. He pulled his shirt up over his left shoulder.

He did it without my “official word” prompting. He did it without someone calling his attention to it. He did it without cue cards on the wall or someone signing to him. He did it without an encyclopedia’s worth of IEPs and a lengthy conversation with a professional on positive reinforcements – all things I’d spent the last hour worrying about. AND he did it with his left hand.

I’m watching from the other room feeling frustration and grief and anger when the lightbulb over my head flickered on. I need to just KISS when it comes to Nick. Keep It Simple Stupid. In this situation, the stupid applies to ME. Me, the one who over-thinks and worries too much. ME, his mom.
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