NO FEELINGS
October 1, 2014

Despite that fact that it’s 2014, and we’re no longer living in an era where we hide away children who have disabilities or challenges or are different, I was recently asked by a woman if I thought it was right for me to be taking my beautiful, smart, funny, wheelchair bound son out in public!

It still infuriates me despite having had some time to process it and to calm down. It also deeply saddens me that someone, anyone, takes this view. I try to wrap my head around her intention and while I suspect it comes from ignorance, it also came from a place where she (wrongly) thought she was initiating a protective skew on my exposing my son to scrutiny or judgment.

Part of me worries that there is a populous that will never be comfortable or accepting of people who are different. It’s hard to escape this reality. I’d be lying if I didn’t acknowledge that I see people secretly and not so secretly checking out my son. I see mothers shush their curious children and sweep them past us. When it’s convenient, I gently call them out, inviting the children to say HI or to ask questions.

I’m proud of my son. He’s an amazing kid who has faced challenges all of his life and still manages to lead what most would agree is a pretty normal life. He may do something in his own way, but it’s never stopped him from trying new things or pursuing interest. I want people to understand that just because some is different doesn’t mean that they’re not also very much the same.

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ACCIDENTS WILL HAPPEN
September 30, 2014

Yesterday tragedy struck on the playground. Cole accidentally collided with a friend whilst practicing driving the power wheelchair. He’s been really careful, mostly just harming himself, scrapes and bruises from running into benches and things. By all accounts he was moving and she ran up, from out of nowhere, to hug him without realizing he was moving and Wham! Bloody heel…I’m sure tears…

She’s thankfully okay and hopefully more keenly aware to be cautious around moving wheelchairs with newish drivers.

He’s okay too. He was really shaken up, knowing he had hurt his friend, accident or not. Even when the story was recounted to me when I arrived home after work, he was near tears over it. We texted his friend and her mom just to make sure everything was okay to reassure him.

His take away from this is that part of the responsibility of driving a power chair includes not only keeping your eye on where you’re going but being aware of your surroundings. It’s not unlike our own experience driving cars. He now has an understanding that while he can’t control what other people around him are doing, he does need be on the alert. His chair is a heavy, powerful piece of moving machinery that can do harm to him or to others if he’s not super aware of his surroundings, even when he’s driving cautiously.

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Best Thing That Never Happened
September 29, 2014

Sitting across from my husband, sharing a meal and uninterrupted conversation is a rarity in our lives.   On those rare date nights, I’m reminded of their impact of them on our marriage. I’ve always understood that marriage, or any valued relationship, takes work. It’s never easy for two people to sustain a relationship of any sort without acceptance, compromise, effort and passion.

Most experts cite scheduling date nights as one of the keys to maintaining a strong marriage, and I completely agree. However, most experts are not discussing marriages where there is a child with special needs involved. It’s not as simple to arrange to nights or days out for that matter.

For us the consideration in childcare is having someone who knows Cole well enough to understand and anticipate his needs. Someone who can lift and transfer him if needed to tend to his needs or to put him to bed. Someone who is comfortable with his g-tube if it’s during a mealtime. And someone who can be engaging with him and who will initiate activities besides just watching television. It’s a tall order, and one that unfortunately no one in our immediate family can accommodate.

He’s grown too big for my mom to lift him so evenings are tough, unless it’s a quick school meeting or something along those lines. Daytime quickies could work if the timing is right. He loves spending time with her but it’s most common that it’s an activity, shopping or taking her to lunch, these days.

We have a couple of people we engage but it’s dependent upon their schedules whether or not it works, and more often than not, it’s for group events or school events. It’s rare that we manage to find ourselves sitting across a table in a low lit restaurant, sipping wine, chatting and laughing…but when we do, it’s impactful. Not having to talk over Cole or the TV, and talking about random things that sometimes, shockingly, have nothing to do with our home life, family, or school, reminds me of our long ago dates.

Despite having been married for nearly fifteen years, these evenings serve to remind me of the times when I was just a girl and he was just boy and we were falling in love. We’re still in love, but there’s something so wonderful about the falling…

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A LITTLE LESS CONVERSATION
September 26, 2014

Let me be the first to site my conversational faults. I struggle with not interrupting, especially when I am excited or passionate about a topic. I also get stuck inside myself in thought. My conversational skills took a dive when I was home for many years with my beautiful son, who doesn’t speak. I talked to him incessantly, and to anyone who came into my world during that time…his therapists, my husband, visiting friends…I was so desperate for adult conversation but so out of practice that I often co-opted every dialogue.

I’ve since regained some of the skills but I do still struggle, both with my own faults and with others. Good conversation is truly an art and I have the utmost respect for those who bear the talent and skill to be successful conversationalists.

A successful conversationalist is someone who is who well versed on the topic and who listens as well as they speak. The gift of gab also includes the ability to put others at ease, and to transition from topic to topic. Another key to being successful in conversation is the ability not to be repetitive in your story telling.

I feel like there is a form of disrespect in someone sharing the same story with you multiple times because it says that they weren’t really paying attention to the previous conversation(s). This skill is something that’s only recently become a pet peeve of mine, and I struggle to smile my way through third and fourth telling. I’m forgiving of a second telling, but impatient and uninterested in the third and beyond. I know I’m guilty of this faux pas on occasion but I’m aware of it and strive to make efforts not to perpetuate the behavior (as I do with my interruption problem).

My curiosity is whether there’s a kind, polite way of indicating to someone that this story has been shared with you many times without shaming or embarrassing someone? My interest is not to hurt someone’s feelings but to move a conversation forward. I suspect etiquette would dictate that you simply grin and bear it and then tactfully change the subject when it’s appropriate…

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TEENAGER OF THE YEAR
September 25, 2014

Cole’s officially a teenager and I’m not sure exactly what that looks like for him. As exciting as it is and as much as I look forward to all of the teenage angst, it also has me concerned about the changes that come with being a teenager.

I’m afraid that it’s the beginning of a transition that may leave him feeling a bit alienated. I hope I’m wrong…or at least that the teens move slower than I did. In most ways his development is pretty typical, despite the restrictions his body presents him. In other ways, he’s a bit less mature than some, a bit more so than others. Kind of middle of the road on that front! I see his interest in girls starting to pique, and I see his friends on the ebb of their own curiosity about boys and girls.

My concern is that as his friends and peers become more independent, adventurous, and even passionate, he’s going be left behind. He’s got wonderful friends, mostly girls, but some boys. He is adored, but as young romances bud, and independent events become the norm (movies, parties, dinners sans parents), he’s going to be in need of some assistance, and it’s not something that we can rely on friends to be responsible for, but also not times that a parent would be welcome. And how does it work if he wants to date?

Do you find a youthful caregiver who can just sort be there but blend into the scenery? Do you find a willing friend who is trusted and capable? This all falls into the category of things most parents don’t have to think about, and that no one ever tells you might be important…

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I Melt With You
September 15, 2014

I’m a native Southern Californian. I’m an original Valley girl to be exact. I can tolerate heat and I know the ins and outs to getting things accomplished when it’s wickedly hot. However, wickedly hot is the high 90’s to low 100’s. The past days have been over 110 degrees. At some point, the incremental heat increases tenfold! It’s too damn hot. It’s hard not think or talk about anything but the heat.

This past weekend was over 110 degrees outside and the home air-conditioner struggled to maintain the house at even 80 degrees. When it’s this hot there’s little motivation to do much of anything. Although just sitting on upholstered furniture is a sticky affair too. Our comforter is down filled so lying on top of it is miserable because it warms you from underneath. The couches are also down filled so after a little sitting, you’re left with a toasty tush. And forget about the car! Those first minutes are suffocating.

Cole’s chill out chair is anything but chill when the temperature is this hot. It’s covered in an insulated fabric that protects the chair frame from any spills, leaks or otherwise, which is some sort of plastic or similar kind of lining…something that doesn’t breathe. So poor dear ends up with a sweaty back, bum and thighs.

The cat just sleeps, and the dog has wisely discovered the cool hardwood floor right under the air-conditioning vent. Arguably she found the single coolest spot in the house. Cole swam, and soaked in the bath tub until he wrinkled. Mostly we all just melted…

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HELL ON WHEELS
September 10, 2014

Perhaps a little dramatic but I just watched the first episode of the final season of Sons of Anarchy…

The aforementioned test drive power wheelchair will be spending the next month and half at Cole’s school so he can practice driving daily and learn to maneuver around his actual campus. He’ll also be able to have it at home on the weekends, oh my! Watch out world. If this doesn’t give the boy the motivation needed to master this beast, I don’t know what will.

The test chair is not perfect. It’s a tiny bit too small for him, and does not have all of the custom outfitting that his push chair has. He needs specific types of supports, including a five point harness across his chest that helps to right him in his chair. He also has an adductor piece that keeps his hips aligned, which again, helps him to sit straight and tall. The test chair does not have the ideal joy stick, or arm rest required to help him best access the driving mechanism.

However, somehow he does mange to access it and is doing pretty well with his driving. If he can master this chair without all of the things that will make it easier for him, he’s going to be insanely good when he has his own, customized, perfectly fitted power wheel chair. It’s exciting.

I can’t stop thinking about how much freedom he’ll have being able to be his own captain, to, for the first time, have a choice and the ability to fulfill it in terms of where he wants to go. We take it for granted that we can just walk over for a drink of water, to visit with a coworker, to move out of the sun while your mom is talking to a friend…He’s never had that. Until now!

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SCARS
September 9, 2014

A dear friend’s daughter recently started to come to terms with scarring she has on her chest from several opened heart surgeries she has endured in her short thirteen years. Understandably, she felt self conscious about them and their unfortunate placement, especially for a girl who wants to be able to wear cute tops, sometimes with lower neck lines. But it’s more than just coming to terms with the actual scars. They are in no small way a part of who she is. They represent her survival and the magic that is her. For that reason, they are beautiful.

Her writing about her scars got me thinking about Cole’s scars. He too has had a great many reminders of his strength and survival. His body is a map of his life in some ways. At birth he had chest tubes, represented by tiny “x’s” on either side of his upper torso. His little belly button has miniscule prick scars from something early in his life. Funny, I can’t recall what it was. A monitor of some sort I think. If you look closely at his eyes, there is a little scarring on the inner whites from a corrective ocular surgery to uncross his eyes when he was about eighteen months.

His calves have two sets of linear incision scars running down the back of each leg from two different surgeries to lengthen the tendons to give him more flexibility. He has similar scars in the crook of his upper inner thighs. Each hip has a slash where plates were inserted, one side to prevent slippage of his hip, and the other to repair the slippage and reinforce it.

And then there’s the tiny indentation scar on his right temple, caused by none other than his dear mother when he and I were in Newport Beach wandering the ocean side looking for a beach house rental for the upcoming summer. We hit a rough patch on the sidewalk and his wheelchair flew from my hands, into the street (thankfully a very quiet, traffic free street) and landed on its side. His eyeglasses nicked his temple. He strapped in safely never hit the ground, just kind of sat on his side with the arm of the wheelchair against the pavement. In one fell swoop, I righted the chair and he burst out laughing while I cried…

I don’t know how he feels about his scars. Many can’t be seen due to their locale. Even his leg scars are often hidden by the long tube socks and AFO’s (leg braces) he wears to stabilize his walking. The only scar in view always is the one I caused…normal wear and tear of childhood, kind of. I have a similar indentation in my forehead where my grandmother accidentally closed my head in a door…The only time most his scars are visible is when he’s bathing, or in the summer when he lives in shorts and swimsuits. His friends don’t ask about them. I don’t know if they even notice them. He’s always in motion so they kind of blend into the landscape of Cole.

I treasure each one because they serve as reminders of the force that is Cole.

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COLE’S CONFETTI CUPCAKES
September 3, 2014

I may have shared that Cole has a g-tube. He’s been fed through it since he was five weeks old…so going on thirteen years! He gets all of his nutrition and hydration from his tube feedings but keeps his taste buds active and keen with regular bites and tastes of fruit, fro yo (chocolate is his favorite), miso soup, sushi, birthday cake, and french fries with lots of ketchup! He drinks sips of water, juice and iced tea (he loves earl grey with a touch of honey and green tea). For much of his life he’s been a self-proclaimed vegetarian, a claim influenced by my husband’s goddaughter who has been a vegetarian since birth, despite having two carnivorous parents. Cole has tried sushi and has recently tried a little speck of hot dog and of a turkey burger but by and large he has little interest in anything meat. Which is fine…

The funny thing is that he’s been an avid viewer of cooking shows since he was a little tiny boy. He watches with intent and interest and loves to help me cook as well. We’ll chop together and mix and stir. He’s sous chef. He’s gone to weeks of summer cooking camp, bringing home the days recipes and leftovers for us to taste. He really loves cooking and watching cooking shows.

So when it came time to plan his 13th birthday party, we thought of several ideas. I suggested the backyard movie party that we’ve done the past couple of years (Princess Bride for 11th and Star Wars for 12th), but he nixed it. Somehow we came up with a cooking party and then after watching some you-tube videos for some recipe ideas, we decided to make confetti cupcakes, and to film he and his friends in action to create a cooking video.

Now the prep begins. Finding the right cupcake liners, choosing favors and planning a snack menu for the kids to nibble on whilst the cupcakes cool so they can be frosted. Here’s where I kick into gear. I’m great at the nuts and bolts of things while Cole’s a great idea man. I’m figuring this is probably the last year of traditional birthday parties. Teens don’t much do the party thing…The fun thing is that we’ll have a tangible memory of this one! Our first you-tube post…

(I’ll share the highlights of the party – it’s not until the 21st and maybe a link to the video if we succeed in creating the video)…

 

 

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