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Botox and a busy body

‎"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family." 
Author Unknown, found on Cerebral Palsy Family


Nick's cerebral palsy, specifically his left-sided hemiplegia, has made it's annual summer appearance in the form of a rolled foot. The foot is a combination of factors: he isn't wearing his orthotic as much because he's in and out of the pool, he isn't on his ADHD meds because it's summer, he is nonstop from sun up to sun down and he's learning new vocabulary and concepts. Nick's brain always compensates when he's developing new skills and those new skills require more mental direction, so the foot starts to roll.


The past few summers we did serial casting to encourage the ankle to straighten. Last summer, he ended up with a cracked metatarsal bone. He doesn't care if his foot isn't flat, there is fun to be had in the backyard and he will propel himself at top speed toward it.


This summer we are trying botox injections to relax the spastic muscles in hopes of avoiding the serial casting and broken bones. Nick's physician specializes in pediatric rehabilitation spasticity management and we feel he's in good hands, but I did read the risks list and found fear creeping into the decision.


The handout from the doctor includes a statement from the Federal Drug Administration (FDA) stating a possible link between botulinum toxin injections and 4 deaths in children who had received botox. Those that died were males (CHECK), at least 2 had seizures (CHECK), at least 2 were immobile, at least 2 had gastronomy tubes, at least 2 had cerebral palsy (CHECK), one had spina bifida, aspiration pneumonia was the final diagnosis in all the children.


According to the doctor's handout and my own research, botulinum toxin can spread to parts of the body that were not injected. This can cause unintended muscle relaxation and, unfortunately, death in isolated cases. When used correctly, Botox can block the ability of nerves to release chemical messengers that signal muscle tissue to contract. By blocking these messengers, muscles relax and can be stretched at home and by a physical therapist to stimulate normal growth and increases in range of motion.


Working my way through the "does your child have" list brought slight alarm.

1. Seizures (his are myoclonic in nature and are currently controlled)
2. Problems with swallowing 
1. Drools a lot (BIG CHECK if he's concentrating. We've all learned the rule of telling Nick NOT to put his head on your shoulder if you'd like your shirt to stay dry)
2. Can't chew (Does "won't chew" fall into this category?!?!?)
3. Coughs with eating or drinking (Absolutely when the TV is on and he forgets he has food in his mouth and goes to speak, there's quite the coughing and gagging)
4. Needs a gastronomy tube (I do hope those with children who have g-tubes forgive me, but there are days when I'd beg for a g-tube. Getting Nick to eat is not for the weak and it is so painful to put him on a scale and realize he's gained only 6 lbs in the 5.5 years he's been a part of our family.)
3. Problems with moving around (Are you asking ME or HIM? He certainly doesn't think so!)
4. History of aspiration pneumonia (SEMI CHECK)

The SEMI CHECK is because I'm not sure if the pneumonia was viral or from aspiration. At the time, he was a chipmunk champion - he'd hold pockets of food in his cheek for H-O-U-R-S. When told to swallow, he'd scream (What? Nick scream? Never!) like a dying penguin and choke on what had been forced down the windpipe by the blast of screaming air. Nick became extremely ill and the doctor wanted to admit him to the hospital. My husband was in California, I was single parenting 5 children, so I pleaded with the doctor to let me treat him at home with daily visits to her office. A few days later, Hurricane Ike demanded we evacuate before destroying half of our home we'd occupied for 2 months. 


Cue the choir with something dramatic like Amazing Grace.


After discussing Nick's risks, the doctor concluded his are low. She will use a relatively low dose and a restricted number of injection sites. I never would have guessed Botox would be a part of my life, especially in this way, but if it can help my busy body avoid further trauma and give him a little stability, we're game.

planning with a pencil and a little Buffett

What's the saying about having children and best laid plans?  I'm sure it says something about increasing your plan diversions for every child you have. Or maybe it says having a special needs child guarantees altering your plans.


There WAS a period in my life where events and activities were written in pen. Now, it's straight pencil.


Take today for example. Plans were changed early and lunch arrived quietly. The quiet turned into screams of pain as Nick stumbled and fell into Michael's sea chest. You know how a single moment precipitates from the perfect ingredients - the right angle, the needed forward motion, the exact sharp corner, the child with cerebral palsy? Well, it was mixed at the necessary temperature with a little creative dress-up (which probably hindered his ability to walk) and a long, hard-to-pass-by-without-looking mirror. 


The result? A speedy visit to the pediatrician for stitches. After we changed him into real clothes.... 


I heard the scream, knew there would be blood involved. Nick has this discrete "I see red" pitch to his scream. I hastened my sandwich-making skill for the other kids and grabbed the phone. Yes, the pediatrician is on my "favorites" contact list. We're practically BFF's with the amount of calls I make for emergencies, well checks, general questions, referrals and med refills. 


We learned many years ago one of the important aspects to surviving life with a medically challenged kid - have a great support team of professionals. When we found the home we're in, a selling point was the close proximity to the pediatrician who does casting and stitching in-house. We knew it would be vital.


Nick's medical team knows him well. Fortunately, not so much for mishaps and accidents, but more for maintenance. I don't have to list out the lengthy history, explain anything (like his extreme low weight, why he's not responding to the questions, etc). I would even say he's a well-liked little patient there.


The decision was made to stitch his forehead gash closed and we all crossed our fingers he wouldn't require sedation. He didn't. The 5 of us that held him down and did the lidocaine injections just have a little less hearing...


I used a time tested music therapy strategy and broke out the big guns - Jimmy Buffett. Nick immediately calmed. No way he was going to let his screams drown out his Buffett. When Margaritaville came on, he sang the chorus:

Wasted away again in Margaritaville,
Searchin' for my lost shaker of salt.
Some people claim that there's a woman to blame

It was hard NOT to laugh. Poor guy. He sang his way through a few more songs before he was allowed to be free and we were back home in less than an hour.

I'm curious to see what tomorrow brings.

struggles with unattended children

The sign in the fast food play place reads: Children must be with an adult in the playland at all times. If children are left unattended the police will be called.

But what happens if the children weren't left in the playland unattended? What if they arrived unattended?

Matt and Jess were with me yesterday while we waited for Nick, who was enduring his weekly 3 hours of private PT, OT and speech. As I was waiting to order my coffee, three young girls, maybe 9 to 11 years of age, came in from a side entrance. Immediately I could tell they were street-smart, aware of their surroundings and they had obviously just woken up.

One had no shoes. Their clothes were dirty and either too small or too large. Hair was knotty, unbrushed probably for days. I smiled. They accepted my smile, but the response was split-second, cautious and only courteous.

I noticed they paid for their order with a gift card, not a credit card or cash. The middle child, who had gorgeous blue eyes, was in charge. She knew how much money was left on the card and informed the other two what they would be eating. I also noticed they were savvy enough to ask for plastic cups for water to avoid paying for a drink.

After they ate their breakfast, they played a game of hide-and-go-seek in the playland. I gave a few laughs and attention, but not overtly. I wanted to ask, "Where is your parent? Your guardian? Your babysitter?" But I knew the answer.

Jess came over to get her drink and we shared a giggle at Matt's antics from high above us in a bubble. The middle child stared at Jess, shook her head and then sneered. It was very clear to her I wasn't Jessi's biological mother and I wonder if she was jealous. Maybe she didn't care for Jessi's dress. I'm not sure.

When Matt approached their group, they didn't give a second glance at his CI's as so often happens when we're in public. Whatever. In their world some random kid with things attached to his head doesn't register. I imagine that's because their eyes have seen much. Much more horrible and devastating than my eyes.

They began to quarrel with one another. The middle child dominated with the "I'm not playing your game anymore" strategy of forever not being "it". She needed to win at something and was clearly proficient in rewriting the rules, especially the rules of her life. To hear their jabs at one another was painful.

If it had been my children, I would have offered pen and paper and suggested the game rules be written down to avoid arguments. Sadly, I couldn't muster the courage to share this idea with the girls. It was as if they were wild, mysterious creatures I didn't want to spook. Can you see it though? A stranger offering a "Better Homes and Gardens" approach to their predicament? "Really, lady?"

I did offer my observations on how comedic and crafty I thought the youngest was in tagging her sister (or friend, not sure). A slight smile, quickly replaced with a stoic expression, was my reward. I say MY reward because THEY weren't looking for one. They were just trying to be children.

With all of the media coverage of she-who-will-not-be-named, I've seen many in our society become outraged with what I perceive as energy lacking in real purpose or endurance. So, I challenged myself with my own reaction to make a difference in the world. As I pondered how to complete such a challenge in these girls' lives, I realized my own children in front of me. My children, adopted from foster care, who could have been these 3 girls with no adult supervision, no shoes.

Instead, they are happy, carefree children who think their world has been turned upside down when I turn off the TV or make them leave the YMCA before the hour is up. Their early lives were filled with trauma and abuse and the need for strong survival skills. Thankfully, they have no memory of those years.

As I struggle with how I can help these unattended children in a fast food playland, I realize it's time to leave. Calling Matt over and asking him to put his shoes on spins my struggling wheel to a different wedge. It's no longer pointing to "help strange children, " but has stopped on "help your own children."

As we exit the building, the girls are filling their pockets and hands with creamers.

What would you do if unattended children arrived in your life?

what are we handing down?

It's surreal how a soft-spoken "Mom, can you come here?" from your teenager at the front door can elicit the evolutionary fight or flight response.


"What?" I demand. Translation: "Are you OK? Is the car OK? Is anyone bleeding? Is anyone dead?"


"Just come here, please."


As I follow him out the door, I find myself muttering under my breath, just loud enough for my friend to hear, "I can't take anything big. I can't take anything big."


Truth is, I could. I knew no matter what awaited me, I could take it. 


The moment had nothing really to do with the reality: a stalled car in the street that needed to be pushed up the driveway. Material items can be fixed or replaced. This moment was a prime teaching opportunity, a chance to show my children (3 of whom were involved with the car) that when faced with a predicament, you literally and figuratively keep walking and face it. 


I was giving my children what I had - the gift of effective coping skills. Quiet, reflective, calm cope.


I have other less desirable coping strategies, of course. My favorite (*insert sarcasm*) is one I've deemed Monster Mommy. It isn't attractive and no one cares for it, but it can propel my family into action faster than calm cope. It doesn't need to come out daily, just often enough that they don't forget I am capable of unleashing Monster Mommy. 


Ultimately, though, Monster Mommy only teaches chaos and uncontrolled feelings that are randomly spewed. There is nothing positive or constructive with it's use.


I need to teach my children effective ways to live their lives. Following Brené Brown's Imperfect Parenting Blog suggestion to identify things I'm handing down to my children, I offer the following current list:

• calm coping abilities
• less blame and more acceptance of facts
• ability to show care and compassion
• required basics for a strong marital foundation
• importance of knowing WHO you are
• unapologetic expression of self

It took several people to push the thankfully small car up to it's parking spot. Allen was able to have Michael talk him through solutions on the phone that evening and the teen was back in business the next morning. Allen had a few flares of frustrations, who wouldn't? But he practiced his calm, quiet, reflective coping skills and ended the day knowing he can take no matter what awaits him, as can I.

being watched while being late

I'm always late. Ask any friend who sits alone at our meeting place for an extra ten minutes. Ask any dentist office, any doctor's office, any rehab therapist's office..... any Girl Scout leader...

Sometimes I offer an explanation. Other times, I shrug my shoulders and plaster a clueless expression on my face. I'm not clueless, though, so my acting skills have needed practice. "Am I late? Huh. Isn't that something?"

I've learned that being late can quickly become habit for certain events. Like Jessi's Girl Scout meetings. I don't remember arriving on time ONCE. And I never offered a reason. This activity was for Jess and Jess alone. It wasn't for Allen and Emma's little sister. It wasn't for Matt and Nick's big sister. Just Jess, so I didn't even take the other kids with me for drop off and picking up. They didn't know our back story because I didn't want the connection. I wanted them to see Jess for just herself.

I think, however, what they saw was some mom who couldn't get her act together.


I joked with friends that I must look like some crackhead mom who barely pulled herself off the couch to run her kid to meetings and then had to put down the booze when it was time to pick up her kid. True story: I was even late to the end-of-the-year ceremony! I vaguely remembered RSVP'ing for the day and time.....


Here's the thing: I have 5 children who all have schedules. My dry erase board in the kitchen is color-coded to help me stay on top of it all. Allen and Emma are very good at following me around the house about 15 minutes before we're due to leave saying, "Mom! It's time to go! Mom! We need to leave!" Jessi doesn't do this reminding act yet, but soon will be. Up until now, she's relied solely on me telling her when she needed to get ready, but those are lessons on managing time, being organized and being aware of what's going on around you that have been missed with Jess. We are working on these important lessons this summer, but kids learn from what WE do.....

My reasons for lateness on any given day can vary, but Nick is somehow involved usually. The child is demanding from the time his heels strike the wood floor above my head. He clomps down the stairs and sidles up to his breakfast stool. With his location goal met, he begins Act II: eating as slowly as possible in the hopes mom will leave the room and he can escape. He's always busted. Always, but he tries every single day....

For the most part, the morning routine stays the same. Yet, every day he tries to see if there's a loophole, like some fine print clause you forgot to read on your TV warranty. "Maybe, just maybe," I'd like to believe he ponders, "today will be the day I am not watched like a hawk. Maybe today I can play the guitar for an hour BEFORE pooping on the potty and brushing my teeth. Maybe TODAY IS THE DAY!"

Insert evil laugh or hopeful child squeal, whichever suits your personality better.

So, maybe, in some way, he gets the optimistic attitude from ME. Each day I start with hopefully attainable goals. Simple goals, "Get out the door on time", not like "Solve world peace" or anything.

Maybe today I won't be met with stubbornness, resistance, tenacity and shiny things (oh, look at that laundry I can start....). Maybe today I can get out the door on time. Maybe today I will be the perfect role model for my kids. Maybe TODAY IS THE DAY!

Follow me as I begin my 365 day self portrait project on http://careyannephotography.com/365-self-portrait-project

skin color does matter

age 9

This week I witnessed Jess sunbathing after an hour of swimming. To her credit, she applied SPF 50 sunscreen first. She's seen the latest news reports on the dangers of skin cancer and my hula girl is adamant, "It can kill you and I don't want anyone in my family to die!"

Although, with the way she sprays the sunscreen in hers and the boys' faces, someone may die from inhalation......

I asked (with a slight "maybe you're not really doing what I think you're doing"), "Jess, are you trying to nap out here? If so, I'd like you to go inside."

"No, I'm not napping! I'm SUNTANNING!" she blurts.

Pause. "Why?"

Again, blurting, because I must be the only clueless mom on the block, "So I can get tan!"

Pause. "Honey, you're Hawaiian. You're already tan. Please at least go sit in the shade for a while."

Our first Texas summer, her almost-white skin bronzed quickly and became the deepest, golden brown. She was confused. "Why is my skin darker?" Living in the Last Frontier all of her life hadn't provided opportunities like this melanin reaction. She'd do the arm comparison, where you hold up your arms next to one another to see who is darker, to EVERYONE. Constantly. As if a day inside might make her skin return to it's Alaska color. No luck.

This child had been with us for 4 years at that point and never once felt different because of her skin color. Now, when we out, my hula girl stuck out more than her CP, microcephalic brother. Feelings she'd never experienced bubbled to the surface. To our credit as a family, she was still the little sister to Allen and Emma and the big sister to the twins. Solid in the middle. Solid in who she is as an individual. We discussed her feelings, helped her process the face she was seeing in the mirror each day and in typical Jess form, she shrugged her shoulders, made a little whatever expression and moved on.

I've read other blogs and articles on discussing race with your children, especially informative ones by Kristen at Rage Against the Minivan where she says

"Love that overlooks is belittling. Love that acknowledges is accepting."

Kristen also says, based on her research, that the risk of a child being excluded from their peers based on race is high. Jess has definitely had experiences of being left out for her race, but also for being adopted. For that matter, we've all had those experiences as the parents and siblings. You learn to react with purpose to the shocked classmates' mom's faces or the playmates' blatant "how can you be HER mommy? You're white!" comments. 

But Jess sees her younger brothers being excluded as well. Excluded for their developmental delays, their hearing loss, their physical disabilities. Kristen, at Rage Against the Minivan, says race is "as impactful as gender, physical differences, and even cognitive ability."

Great.... Maybe we should just stay home. 

Or maybe we follow Jessi's lead, who has no doubt been following Matt's lead. Matt believes the world has been made for him. Sometimes only him. He enters a room, declares his arrival with a giant, "Hey Friends!" and immediately scours for the most entertaining item at breakneck speed. He easily ignores the looks and stares at his cochlear implants. I think in a funny jokes-on-you way, he believes all of those stares are because he's so awesome. "Why wouldn't someone want to look at me?"

I also think Jess can use her brothers to her advantage. "Yeah, well, if you have a problem with my skin color, you should my brothers and their differences." No, I can't imagine she'd actually say that, but I can see her shrugging those shoulders and moving on in a way that's the epitome of Jess, ""Fine with me. You aren't very nice anyway."

age 3 in Hawaii

We don't talk about race every day, but we aren't blind to Jessi's skin color. She's darker. Period. And she wants to be even darker. Jess has decided this is the year she will again win the arm comparison competition. (Admittedly, it IS done frequently in our home because both my husband and oldest son are dark complected and my son will compete with you for ANYTHING. Just his nature and all in fun.)

She WANTS to be the darkest family member. She WANTS her skin color to set her apart. She's PROUD of her skin color, of her heritage and of her family. She is nani and she's our determined hula girl.

KISS the mentally retarded child

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.

a favorite frozen treat

"A literal hole in the wall that's the last place you'd expect to have good snowballs" ~ Emma's description of Plum Street Snowballs in New Orleans

We are huge Plum Street fans. Huge I tell you! So huge that when my cousin recently posted she was AT Plum Street AND added a picture of her delectable frozen treat, my children groaned with envy. Naturally, the stop was added to our day in New Orleans this past weekend. No one went away unsatisfied!

blended adoptive family sighting in New Orleans!!!!!

ALERT! ALERT! Blended adoptive family spotted on the streets of New Orleans!!!!!

Truth be told, my family wasn't all that excited or supportive of me setting my camera on the ground and using the timer to get this image in the middle of the French Quarter in New Orleans. Probably wasn't the smartest idea to set it on my purse, either, but I was banking on the fact that not many people approach us in a big city. 

*side note* There was this ONE time a guy lurched out of the shadows at the kids and I as we were heading to our car after a long night at the Houston Rodeo. He asked for money.... Did I mention it was a LONG night? Or that I'd carried Nick the entire walk? I replied with something along the lines of "Are you serious? Do you not see the F-I-V-E children I have with me? They take all of my money! There's none for left for ME, much less some STRANGER! Who do you think you are?" The kids said they'd never seen someone run away so fast. Ever!

Besides, don't Brad and Angelina walk the streets with their kids all the time? If it's good for them, it must be for us, too! Actually, we love New Orleans. We were treated with 3 festivals that day: Seafood Fest, Creole Tomato Fest and Zydeco Fest. All free. Music on every corner, people dancing, delicious food smells, yummy eating and that energy vibe that only NOLA can offer.

Lucky children of mine were tortured with a request to sit on different steps of homes that lined a street perpendicular to Bourbon. They look thrilled, right?

life is grand in Grand Isle

Grand what? Where is that? Where is Grand Isle?

Grand Isle, LA is a barrier island in the Gulf of Mexico accessible by a toll causeway. It's a seafood haven and also home to Coast Guard Cutter STURGEON, which is Michael's new unit for this next year. There is plenty of fishing to be done and a beach with decent waves, which we took full advantage of during our stay.

Mimi joined us at the state park for camping and rented a small boat for the day. Allen, Emma and I perfected our southern fishing abilities and realized quickly how different it is from salmon fishing in Alaska. At one point, Allen landed a little fish and asked what he should do with it. "Throw it back in and use it as bait!" He did and immediately caught a speckled trout! Two for one!

We also landed a mullet. Okay, more like he sacrificed himself by jumping into the boat as we were moving. Literally, jumped into the boat. Like you see in the movies.

We had a great time with STURGEON's crew and a special shout out of THANKS to the FS2 who cooked several meals (and delicious cupcakes) for Circus Vorholt.

when's dinner?

Would you like to come to dinner? All seven of you?

It's a simple question. A simple question followed by hours of food preparation, house cleaning, cooking and entertaining, but a simple question nonetheless. For our family, it's a simple question that can make you run for the Pepcid or Tums. Or a bottle of alcohol.

From the day we took the twins on our first outing as a soon-to-be family, eating has been problematic. That day began somewhat normal. Michael and I stopped at a local grocery, I bought pretzels (because what toddler doesn't eat pretzels?) and we apprehensively took responsibility for two little boys. The apprehension came from having met them the day before and realizing what a mountain of struggle we were up against. They could hardly walk... and they were two years old. There was zero understanding of basic needs like thirst and hunger. They could say a handful of words, actually it was more like they parroted what they'd heard, and it was obvious there was no comprehension of what these few words even meant.

But they smiled. And they were happy. These two little boys would be joining our family and we needed to get busy on making a connection with them. 

We chose to have lunch in our favorite Alaskan town of Talkeetna, about an hour drive from where the boys were living. We set out on our date with songs and finger play to keep the confusion of "who are these people" at a minimum. At one point, somewhere in BFE Alaska, I handed each boy a pretzel. I was raising three children, for crying out loud. The act of handing a toddler a pretzel in a car was second nature. I could do it in my sleep if needed. 

Pretzels were taken and I turned around to enjoy the beautiful scenery as we made our way towards Denali. The sound of deep, guttural retching didn't really register at first for either myself or my husband. Up until that part of our parenting chapter, those sounds only occurred when a child was violently ill. I turned around to see one child beginning to vomit and like a precision clock set to go off exactly two seconds later, the other child vomited. All over themselves, all over their seats, all over the rental car. 

Fast forward a few years, because revisiting those first few months with these children who could regurgitate like penguins if you only showed them a spoon much less had them take a bite would require a bottle of wine and some long weekend on a tropical island, and mealtimes still are not our favorite activity. Our better days, the ones where the boys actually want to eat and clean their plates with no gagging or frequent jags of protest, do occur. Not as often as we'd like, but they happen. 

We learned it was impossible to expect these children not to gag at some point. Nick has cerebral palsy and literally forgets to swallow periodically. So, he'll start to talk and forget he has a mouthful of food. And up it comes. Matt will occasionally shove too much food in his mouth in an attempt to be "all done" and leave the table. He chokes and up comes the food. 

Acceptance of this behavior was integral and necessary for us to maintain some sanity, so we taught them to vomit quietly and efficiently. Throw up into something, whether it's a bowl or a napkin or your own shirt (OK, this was only once and Nick was really sick in a store where I didn't want to make a scene because we already get enough rubberneck stares as it is). We also trained ourselves and the other children to not give the situation any attention, to the point where we can help the child but not look at them, so others with you aren't alerted to what is going on. In fact, Matt threw up yesterday while we were eating lunch and I'm not sure my mom even noticed. We kept the conversation going, Matt really didn't make a sound and no one stared or said anything. 

Added to the boys' oral motor difficulties are the years of trauma they experienced in life, but especially with food and eating. Trauma that told them reaching for food was unacceptable, trying to feed yourself was unacceptable. And paramount was that if you vomited, you were taken out of the chair. A meal was/is seen as a punishment. We've come a long way (think around the world long), but we still have several more planets to traverse before we ever reach anything that resembles a relaxing family meal where everyone smiles and chats and no one gags or asks for ketchup.

signs of summer

Top Ten Signs of Summer in Casa Vorholt:

1. clothes are being shed wherever and whenever someone gets an urge to swim
2. frequent crying jags b/c we're out of routine
3. pitcher of Michael's tea (1/2 lemonade, 1/2 tea) in the fridge
4. increased amounts of sound, particularly yelling, emanating from the abode b/c (a) you don't realize Matt is without his CI's or (b) Nick is without his hearing aide
5. did I mention the crying? (It seemed to be Nick's primary mode of communication today until he took a 2 hour nap)
6. signing, signing and more signing b/c Matt doesn't wear his ears in the pool, which is where he stays 24/7
7. dinner is eaten outside in the backyard
8. quiet mornings are plentiful and no longer require me pulling my hair out as I try to get the little kids up, fed, dressed and out the door for the buses 
9. HYPER children..... we don't medicate often when they're not in school and it shows
10. an endless line of requests for "band tape" from all of the accidents, scrapes and falls that come with hours of creative outside playing

This picture is a typical scene. I'm not sure why Matt left his ears on the stairs...... Chances are, he isn't either. He asked for his "swim soup" as the clothes were flying and he saw Jessi run past ready to swim.
Ready or not, summer is here!

reconnection and letting go

I spent my weekends as a tween and teen at my parent's camp in Slidell, LA. Camps in south LA are houses built on pilings over water. They're used for fishing, hunting and any other outdoor recreation, like swimming and crawfish boils. As a child, the camp was cool with it's wharfs that were perfect for casting nets to catch small shrimp and fish for bait. My favorite spot was the hole in the back room that my Paw Paw had cut straight through the floor. I could hang a light in the opening and fish late into the night. 

As a teen, just the "c" sound would initiate an eye roll followed by the sigh/moan that is expected to be a response. The camp meant I wasn't going to hang with my friends doing "normal" activities. The camp meant I was trapped into a weekend with just my family. No phone, no TV, but plenty of what I perceived as miserable moments.

I have become the walking adult cliche who says "those were the good times" and I was a fool to not have seen it then. 

I was reminded of the camp this weekend while the kids and I spent a few days with Michael at "the cottage". The cottage is similar to the camp. Small, bare essentials, no phone, no TV. But it's not over water. It sits on several acres with a pond, field filled with horses and is just down the street from the grandparents. It's a place of semi-disconnection with the world so we can reconnect with one another.

While we have moments like the one below at home, it's nice to cram my brood into a smaller dwelling so they're literally on top of one another. It builds patience, tolerance, acceptance and more effective conflict resolution.

We reconnected this weekend, all 10 of us (our circus and the 3 grandparents), over fresh seafood caught by Michael. We shared stories, shared laughs, shared tears.

The tears came from the difficult decision to have our 9 year-old blue heeler put to sleep. Her aging body, along with rapid sight loss, had become problematic to her. Her behavior was quickly turning unsafe and included snapping, which had left visible marks on our skin. As my mom put it, "She had a hard time tolerating other children. Now, she can't tolerate her own."

We brought Jewel home as a small bundle of nippy teeth, true to her heeler genes, just after arriving on Kodiak for our second tour in 2002. Emma named her Jewel for our favorite spot on base, Jewel Beach. 

She wasn't a stellar obedience class star. In fact, the trainer had recommended we have her put down. Her biting and nipping would surely hurt someone, she reasoned, but we believed we could change this canine. I can't say we succeeded after nine years, but I can say she eventually slowed down. 

Jewel was an energetic fur bundle who once found her way home through a blizzard and 6 days of navigation from Bell's Flats to our military home on base in Kodiak. She enjoyed riding the ATVs, hanging her head out of the truck, shredding Barbie hair, shredding paper and sleeping on her back. She couldn't stand camp fires or loud noises or being left alone outside. She was neurotic with a capital "N" and she was ours. 

May you have many couches to sleep on (without being told to get off) and an endless supply of balls to chase, Jewel. We will miss you, old girl.

Good memories and great grandparents

Where there's whistling, you will find Pop. 

I asked Jessi to describe Pop:

Fun, kind, happy and loving. My favorite thing about Pop is that he spends all of his time with cars that I like.

Pop loves kids, but anyone who knows us well understands what level of energy my kids require. Sometimes that can be scary for me when it comes to my dad b/c they can exhaust even me at times, and I'm well-versed in all things CIRCUS VORHOLT. What kind of damage will they leave on him? Can he handle their path of destruction?

What I've learned is that while I'll always worry, b/c that's what mothers do, Pop is an adult and can make decisions on his own. His decision this morning was to take the three little ones to the park. They were tickled pink! I didn't ask how many directions they ran in when he released them from his jeep, but when I arrived it was clear he had it all under control. 

Mimi didn't have as much luck when she took Matt with her to the grocery after church yesterday. Something about letting him push the buggy by himself (definitely listed under Circus Rules #45 of what NOT to do) and a display of tomatoes. She braved the errand with our most active child, so it's considered a success.

Grammy (Michael's mom) has also braved the world with the tribe with success. What child doesn't want to hang out with their grandparent and be spoiled? 

We're well aware that our grandchild offering to our parents isn't typical. We know keeping them requires planning, effort and sometimes more energy than you'd care to use, so to have little trips to the store or the park is huge. Those moments make memories. And the good memories help ease the bad ones. Good memories are priceless, just like brave grandparents.

truth time with CI survival

Truth time: we have been known to remove Matt's CIs when we hear the ice cream truck coming......


Cruel parenting or simple sanity survival? 

This afternoon, however, he heard the truck. 


From the backyard. 


Ah, the wonders of technology.


Luckily, the click of the camera shutter was heard and his attention shifted from said truck to paparazzi mom and he came through the experience without one whimper of protest. 


For photogs: I severely increased my ISO, knowing I had no time to change to lenses, which added grain.

parental patience = child's patience

Well, I'd like to think that one must equal the other. Last night, the little kids (we group Jessi, Matt and Nick into this category) had to sit through 2 hours of high school concert music. Overall, they were good, but there was lots of movement. Movement from Nick in protest of having to sit for so long. Movement from Matt who would sign wildly at me and Emma. And an occasional shift of the body from Jessi who just wanted to fall asleep and be left alone. During this semi-torturous event, I found myself deep breathing quite a few times as I practiced patience with the situation.

Fast forward to today when Matt comes home from school. Some may call it OCD, but he NEEDS to perform a task as soon as he crosses the threshold: ride his bike in the "driverwary", swim, play video games with Allen, and the newest...... vacuum with the new cordless machine that has a slight Star Wars look to it.

Nick had first dibs on the cleaner and quickly ran the battery down. Matt was distraught that I had placed it on the charger and threw himself on the floor, I suspect to wait for the charging to be complete. Watching this take place made me happy. OK, not all of the associated screams and whines, but the fact that Matt had a mission and he would lay on the floor until the vacuum is finished. 

Some say kids are packaged similar to their parents. I hope Matt's patience to wait for the charging vacuum is a testament to my waiting with patience at last night's concert.

happy mom's day ~ open letter to my mom

Dear Mom,

I want to thank you for the way you've raised me and for the way you allow me to continue on my own path. Having children gives me plenty of pause, thinking all you were challenged with while raising me. At times, I'm amazed we're doing as well as we are as our mother-daughter team.

I'm glad we had an afternoon together this past week. There are shared moments free of husbands and children that are essential to our relationship and New Orleans couldn't provide a better playground in which to accomplish our memories. Even our little field trip through the shady Lower Ninth Ward proved to be educating and fun. OK, with the exception of the guy who was probably trying to sell us drugs......

What you may, or may not, have realized is that you were a vital player in the transition Michael and I were going through that day. Without having you to spend time with while waiting for my flight home, I may have let the bubbles of sadness take over and consume my thoughts. Sharing a simple cafe au lait while walking the mall helped keep those bubbles flat and deep inside. And certainly the missed airport exit that gave us a great tour of the swamp kept the mood lively.

Thank you, mom, for being there for me. I look forward to many more trips and tours and time with you!

I love you, Mom!

Love, Carey


The following images are from carey anne photography of the Make It Right Rebuilding made famous by Brad Pitt's involvement.