I AM THE DJ (Series – 1)
October 2, 2014

Cole really enjoys music. Perhaps better said, Cole really enjoys music when it’s the music he enjoys. This can change on any given day, and when he’s in need of comfort, it reverts to the treasures of his toddler years like Laurie Berkner, Ralph’s World, and god forbid, Songs from the Street (the Street being Sesame). As soon as the weather cools slightly, the favored music becomes holiday music. It can be months of non-stop holiday tunes. There’s diversity in the holiday playlist, which now includes the awesome Bad Religion holiday album and Michael Buble’s too.

When driving alone with me he’s willing to experiment more with what he’ll listen to. He’s a fan of bands like Weezer, Green Day, One Republic, Foster the People, Coldplay, and They Might Be Giants. Keeping his more age appropriate likes in mind, I snap shots of my car radio display when driving so I can introduce him to new songs and artists on the weekends in hope of expanding our somewhat fixed (and often tedious) playlists. I thought I’d share the recent selection and turn it into my first ever recurring topic. Not all of the selections are hits but I’m honing my skills and more are hits than misses, especially if it’s just the two of us! For some reason he tortures his dad with only kiddie music and a strange unwillingness to bend.

If you have any recommendations…I welcome them! So here are the recent tries:

1. Benjamin Booker – Violent Shiver
2. George Ezra – Budapest
3. St. Paul & The Catholics – Call Me
4. Boy & Bear – Southern Sun (loves!)
5. Ben Folds – Song for the Dumped (listened to Ben for an hour!)
6. Nick Waterhouse – Say I Wanna Know (likes the whole album)
7. Andrew McMahon – Cecilla And The Satellite
8. Squeeze – Tempted
9. Lana Del Rey – Young & Beautiful (sometimes)
10. Joe Cuba – Bang Bang

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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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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 WOULD WALK 500 MILES
September 11, 2014

We receive written notes about Cole’s school day each afternoon. Yesterday’s note indicated that he had spent an hour and half walking in his gait trainer, a walker of sorts, during P.E. He’s been walking a lot more and doing great with it.

Due to construction going on at his school, the kids have to exit the campus, walk up a low grade hill and through a gate that was structured at the top of what is temporarily the playing field…a sport court. It’s not a long haul, but for Cole it’s a huge effort to get up a hill, however small, and then to continue to walk and participate in whatever P.E. activities are scheduled.

Many doctors told us that he would never walk. Our first neurologist said that it would be up to him if he walked. If he wanted it badly enough, he’d figure out how to do it. He wanted it badly and he’ll take it however he can get it, even if it’s in the gait trainer, or with an adult supporting him by his chest and walking behind him. He loves to walk, run, leap and dance. He’s always loved to be on his feet.

The energy and effort he exerts walking just 50 yards is akin to the energy and effort it would take me to run five miles. It takes a lot of juice for him to get where he wants to go but he’s willing to do it. To spend an hour and a half on his feet, walking, and playing is tremendous. It’s impressive.

It occurred to me last night after reading the sheet that he might find it motivating to see how many steps he takes each day. He thought it sounded like a fun idea and I now have a great birthday idea for the most difficult child to buy gifts for! (Nine days and counting till 13!)

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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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JUST THE TWO OF US
July 17, 2014

My husband travels a fair amount for work, and sometimes for pleasure. Today he’s making a long weekend visit to Vancouver for a boys weekend with his best buddy who’s coming from Baltimore. Life long friends getting a rare few days to pack in some quality friend time.

His travel leaves me as the lone parent, caregiver, creator of fun activities, and master of distraction for my son. It means juggling my work day so I can get the boy to school (summer school in this case), and then pick him up at the end of the day from camp, or to find a willing chaperone for the day. It means getting us both up, him fed, lunch prepared and packed, me showered, both of us dressed, him sunblocked, braced and shoed, settled in his wheelchair ready to start the day, and on his way either with me or with said chaperone.

Then off to work for me and reverse the events. It sounds daunting but strangely, when it’s just the two of us, it all goes more smoothly than when my husband is there taking on most of the morning prep since I tend to take longer to get myself ready than he does.

I dawdle. I review emails to get a jump on the work day. I sip coffee and visit with Cole while he has breakfast. Take my time applying a little make-up, and then help with some of the boy prep…I always do braces and shoes.

When it’s the two of us alone, I am a machine…I get everything prepped, shower, dry my hair, swipe a little lipstick and dress all before he’s even finished his breakfast. Lunch gets packed and backpack checked and Cole is sunscreened, dressed, and we’re out the door on time, where we need to be on time. And it all feels easy and manageable.

Perhaps having just one of us to answer to and rely upon is easier than dealing with the two of us. He knows that even with me running around he has my full attention, which he seems to crave. For me, I know that I’m the only one who’s going to be taking care of him, addressing his needs, so I’m more proactive and on top of things. I feel like it would be quite a feat to manage to find a balance when it’s the three of us in action. It generally works okay but there are fits and starts that throw things off. Something to work towards…

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Driving Lessons
July 16, 2014

My twelve and a half year old son has started driving lessons. No, not those driving lessons – power wheelchair driving lessons! It coincides with the car driving lessons my nearly sixteen year old niece is taking right now. Both kids are more excited and far less nervous than I felt at the prospect of getting my driver’s license way back when.

I didn’t like driving and was among the younger of the girls in my gaggle of friends so I didn’t feel the lack of freedom that driving would afford. I had willing friends to get me wherever I needed or wanted to be without the hassle of having to drive or worry about getting a car. I was nearly seventeen when I finally dragged my mom to the DMV for my driving test, which I passed handily, though I still had little interest in actually driving! To be honest, I’m still not a fan.

Today though, my son and niece are both anticipating the independence and freedom that will come with their success at driving lessons. Both are taking it seriously and enthusiastically practicing with the intention of having the ability to take off on their own once they’re, for my niece licensed, and for my son approved for a power wheelchair.

For him it will mean he’ll have the ability, for the first time in his life, to move himself entirely by choice and to places entirely of his choosing. His free will is somewhat trapped by his own body and by the obedience of his parents, caregivers, and friends who fall in the charge of pushing his wheelchair to the places he needs to be or where we want him to be, but not always or necessarily to where he chooses to be.

It’s hard to fathom what this new freedom will feel like to him.

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