Archive for the ‘Life’ Category

BEAUTIFUL DAY
March 2, 2015

We had a rainy Sunday so Cole and I took advantage of a break in the rain and ran a couple of errands (only places with underground parking in case the rain returned), and then spent the afternoon nestled in our warm little house goofing around together. My husband is in Austin, TX for a conference so we’re on our own again. We had him home for a few days after his trip to Wales, but he left again Saturday before we woke up.

Cole and I did a little cooking, laundry, and started working on an art project. Then he, in true teen form, wanted to spend some time alone his room watching a movie on his own. I still marvel at this development, with him wanting to have time on his own, but I’ve come to enjoy it myself. It gave me a chance to do a little straightening up and to paint my toes (without the boys feigning poisoning from the smell!).

We had a few conversations about the upcoming surgery and he seems to be okay with it. He shared with me that he does feel twinges of pain in his left hop, the one that’s completely dislocated, and seemed relieved that it could be fixed. I don’t know how well he remembers the last surgery a few year ago. I think once the casts came off, we all put it behind us, quickly turning the focus to getting back into walking and standing.

Now, as we contemplate this next surgery, some of it is coming back to me and I’m working on trying to put things into place to make the summer go a smoothly as possible. Both my husband and I will try to work from home part of the time, and we’ll need support as well. We also want to line up some fun things for Cole so that he’s not just relegated to watching TV. It’s tough because he can’t ride in a car, sit in chairs, or be easily carried about when he’s casted from hip to toe with the dratted bar between the ankles. The situation calls for creative thinking!

We’ve got a few months…time that will fly…but this time we know what to expect and I fully intend to be prepared for anything, and to make it as easy on Cole as I possibly can.

His big focus is our upcoming ski trip. It’s the third year we’re converging on Mammoth Mountain for a family ski weekend. This year there are 24 of us going. Six families! Cole’s so excited to race down the mountain and to spend evenings with friends. He really loves the thrill of skiing and the Disabled Sports Eastern Sierra has a fantastic adaptive ski program with volunteers willing to take him to the top of the mountain so they can zoom back down. I’m glad he choses to focus on the positive things and now dwell on something that could be frightening or upsetting.
He’s a pretty reasonable, practical kid. Oh, and amazing!

I love having quiet days with the boy. The two of us seem to share the same sensibility about weekends and rainy days.

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THE LAST SONG (Series – 3)
March 1, 2015

February seemed to fly by. It started out with Cole and I having the flu for a full week, most of which my husband missed due to travel, which was probably a good thing since he didn’t catch it too. I felt so poorly that even looking at the computer made me tired and worn. Not a lot of writing this month. I feel it when I don’t have the outlet, but sometimes life just give me the luxury of time. He missed our big school fundraiser too. CHIMEapalooza. It’s a variety show of sort themed around inclusion. This years proper theme was “this is how we do it”. I shared Dan’s piece earlier this month. Tom Morello was the big hit. He came and sang a couple of folk songs, including This Land is My Land backed by lots of our kids, Cole included (he’s a big fan of Mr. Morello!). It was a great night celebrating our school and the amazing CHIME community.

February’s song list and artists are below:

1. THE LAST SONG – The Foo Fighters
2. DON’T WORRY BABY – The Beach Boys
3. SICK AS A DOG – Areosmith
4. I AM THE DJ – David Bowie
5. LOST IN THE SUPERMARKET – The Clash
6. CIRCLES – Soul Coughing
7. I STILL REMEMBER – Gary Numan
8. I WANT ANSWERS – House of Freaks
9. RAININ’ IN MY HEART – Slim Harpo
10. SEE ME, FEEL ME – The Who

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RAININ’ IN MY HEART
February 18, 2015

The past few days kind of took the wind out of my sails.

We were scheduled to have a neurology appointment last Friday, which was confirmed by robocall from CHLA on Wednesday. We arrived on time, checked in, sat for a while, and then Cole was called for the usual weigh in, temperature, blood pressure intake and we were then led into an exam room. We again sat for a bit until someone came in to inform us that our doctor doesn’t work on Fridays anymore. She changed her day. They had left a message at our home mid-Friday morning. Not particularly useful since my husband and I both work, and neither one of us checks the home messages until we arrive back at home at the end of a weekday. Why do all of the forms ask for alternative phone numbers if they don’t use them? Mind blowing…

So they kindly gave us the first open appointment, Tuesday, her new day, at 12:15. We accepted the appointment. Sadly, having missed half of a day at work Friday, I couldn’t attend this time. We also had a morning orthopedist appointment, which I did attend. So no school or work for the boys. Frustrating but both necessary appointments.

The orthopedist appointment left us with hip repair/replacement surgery on the books for June, along with some other smaller surgical procedures that will leave Cole stronger and better able to bear weight, walk and sit more comfortably. This endgame the most important thing to remember during the six or so weeks of full leg casts with a bar between the ankles during the summer. This will be the second “bummer summer” Cole’s had in four years. He had similar surgery the summer before 4th grade.

Oh how I wish I could spare him the surgery and recovery. The first couple of weeks are the worse in terms of managing pain and finding the best ways to maneuver the boy with his casts and bar around the house and keeping him comfortable. Then the boredom starts to set in. Once he’s feeling better and off pain meds, the trick then becomes to find ways to keep a sedentary him entertained.

The neurology appointment happened, and despite videoing some of his seizure activity, it turns out that there’s not much that can be done. We can change medication to something that has more significant side effects, including potential liver and pancreas damage (so regular blood work) or contemplate an implant device that can be effective at calming seizure activity, but takes up to two years to get there, or leave him on his current medication. Given the now upcoming surgery, my vote goes to status quo. It doesn’t sound like the other options are better at the moment so my instinct is to wait until the orthopedic event is over and then get more into the brain activity.

Can someone just tell me when enough is enough for this boy? He’s been through so much, and takes it all in stride. It would be nice if something just went easily for him sometimes.

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I WANT ANSWERS
February 13, 2015

I woke around 5 am this morning to Cole having a seizure in his sleep. It’s unusual for him to have seizures in his sleep but this is the third one this week. Oddly, we’re seeing his neurologist this afternoon to discuss the escalation of his awake seizures, and now the nighttime ones too.

I don’t know what effect puberty, hormones or growth have on the seizures but I notice them increase when he’s having a growth spurt as well as now that he’s hit puberty. They’ve changed in their expression too. It’s unsettling to say the least. In my head I know that they’re relatively harmless, and that he has little to no awareness of them. To witness them, however, is a bit unsettling. It also kills me that he has to experience them.

While he may not be aware of them while they’re occurring, he does often have after effects that linger, which I think he must sense. His color fades completely, and sometimes takes a bit of time for the flush to return his cheeks. He sometimes has mild after shocks, shakes and shivers, and he’s often dazed just following a seizure. My tendency is to continue whatever we were doing or saying so that he doesn’t spend time thinking about the cause for a lull. I don’t know if it makes sense but in my mind it does. I generally just feel helpless that I can’t make them go away.

Most of the medications for seizures have a lot of nasty side effects, including liver damage. He’s been on a medication that has few, and of those few, where he seems not to experience any. But it’s not working that well now and my understanding is that simply raising the dosage ceases to work after a time, and we may be at that time. I worry that we may have to start considering alternatives, most of which are not all that great.

It’s reassuring knowing we might have some answers or insight today. The way my mind plays, the layers of what ifs pile upon each other and start to melt into one big fright. I want a little peace for that beautiful brain of Cole’s. And for mine too.

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I STILL REMEMBER
February 12, 2015

While I’m not big on the whole Valentine’s Day big wow romance thing, it is a day I like to honor people I love with a little something extra. I like to think I spread the love pretty well throughout the year but it’s fun to have an excuse to do a little something more. This year it’s a Saturday night and our sitters are all partnered up and celebrating on their own so I’m pondering ideas for a post-child-to-bed with my husband. We need it…I crave it…(and I’m not just talking about sex…)

Sometimes the demands of having a 24/7 child, full time job, and little sleep leave little to no time or energy for connecting with my husband. Often our conversations are focused on the basics: How is the Boy? Did he have a good day? Homework? How was your day? What’s for dinner? Then, bath and bed. Day over. Not a lot of time left for romance or energy for deep, thoughtful conversation.

It makes me long for the days when we were only two (not that I would trade our son for anything). When just being a couple was enough. We often spent weekends seeing movies, cooking together or trying new restaurants, seeing live music and friends. We were carefree, laughed easily, found joy in the simplicity of our life. Like most couples before they enter parenthood, we had the privilege to focus our attention on just ourselves.

The struggle with having a child who has special needs, particularly when the child is as dependent as Cole, is that all of our focus and attention is devoted to him and it’s constant. Everything else comes second, third, and never. Childcare is harder to come by because some of the needs are more specific. With Cole, we need someone who can lift and transfer him from chair to chair to bed. It rules out grandmothers…

We don’t have the luxury or freedom to do things like a regular date night where we can reconnect and remember. We try to grab moments when and where we find them and we appreciate these treasures, but sometimes if feels like they are few and far between. It’s often easier to for one of us to plan a night out with friends, like my regular Mom’s Night Out, or his recent camping trip with the guys, because there’s not a sitter issue, but it doesn’t solve the need for togetherness. Strangely, too, it sometimes feels like when we’re running through days and weeks without that time, it somehow loses its importance. We forget how great it is to snuggle up together and giggle about silly things, or share a bottle of wine over candlelight. But I still remember…

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CIRCLES
February 11, 2015

One of Cole’s hips turns in enough that it effects his walking when he’s using his gait trainer. The displacement makes it seem like one leg is shorter, and it causes him to turn in circles when he walks. Without support, it’s hard for him to walk straight. As his body has grown, it’s gotten progressively more noticeable when he’s walking, partially because his step has become stronger. His physical therapist suggested we try a lift in his shoe to try to offset the hip.

Light bulb going off! Makes perfect sense, and a fairly simple solution.

So I found a pair of sneakers that are wide enough to fit his orthopedic braces, and sent the left one off to Chicago to have a special lift added to the shoe. I can’t wait to see if this works. Cole’s thrilled about the idea, and is excited to test it out. He wants nothing more than to be able to man the gait trainer without having an adult following him around as closely as they currently do (to make sure he doesn’t go in circles). It cramps his style…

I don’t know why it never occurred to me before. I have an aunt who has a lift added to one of every pair of shoes she owns because a young teen she broke her leg and grew at the same time, leaving one leg shorter. It’s not a wholly uncommon thing. Especially for people who are confined to wheelchairs and sitting and who have cerebral palsy. Hip displacement is commonplace. Cole’s already had a repair surgery and sadly will likely face a couple more as he grows and his hip becomes more turned, despite interventions.

I wish we could solve all of his orthopedic needs as easily as the shoe lift, but I’m happy to take what small victories come our way. I’m very optimistic about this and can’t wait until the revamped shoe arrives back home to its awaiting owner so he can walk the walk, wherever it takes him, more directly!

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LOST IN THE SUPERMARKET (Series – 4)
February 10, 2015

When I’m in organized mode, I do some cooking on Sundays so that we have meals that are easy to prepare during the week. I’ll make a big batch of turkey chili and freeze a few containers for the coming couple of months, maybe a soup, a veggie laden chicken pot pie filling (my husband’s favorite), and simple things like turkey meat balls, easy to throw into sauce with pasta, on toasted garlicky bread for an open faced sandwich, or sliced to top my husband’s amazing homemade pizza…Then all that’s needed is a toss into the oven, or quick stove top prep and maybe a simple tossed salad. It helps keep us on track and ensures that we have healthy meals. Today, I made a couple of turkey meatloaves, one for the week and one for the freezer. I made this recipe up and vary it depending on what I have on hand but it always comes out moist, flavorful and is great cold for a sandwich or on it’s own. It’s a bit healthier than the usual versions because there’s loads of veggies in the mix.

TURKEY MEATLOAF

1 pound Ground Turkey
1 medium onion
1 peeled carrot
1 stalks of celery
3 cloves of garlic
2 generous handfuls of greens – Whatever you have…spinach, super greens, kale
Handful of flat leaf parsley
1 tablespoon olive oil
1 tablespoon Worchester sauce
1 tablespoon tomato paste
1 egg
½ cup breadcrumbs or panko

1. Preheat oven to 350 degrees.
2. Throw all of the veggies into a food processor and pulse until everything is chopped finely but not pureed.
3. Heat the olive oil in a skillet. Add the veggie mixture and sauté for a few minutes.
4. Add the Worchester sauce and tomato paste and heat until everything is incorporated.
5. Remove from heat and let veggies cool.
6. Mix the veggies, ground turkey, egg and breadcrumbs in a large bowl until well incorporated. I use my hands.
7. Pour mixture into a loaf pan and press evenly into the pan.
8. Bake for 45 minutes.

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I AM THE DJ (Series – 8)
February 9, 2015

The Grammy Edition…I’m quietly watching the Grammy’s feeling vaguely disconnected from the show as so many of the artists are ones I tend to avoid. Nothing personal but I’m not a giant fan of mainstream, pop or country. I may be missing out on a lot of great music but my listening time is limited so I’m not feeling like I need to diversify. That said, a random few artists I adore are mysteriously here on the show so I’m fast-forwarding through but taking the time to note a few songs that Cole might like for our next playlist. There have been some interesting performances…AC/DC who sounded great…ELO who don’t sound as great as they once did, despite the boost of having Ed Sheeran jumping in for one of my favorites of theirs, Mr. Blue Sky.

Annie Lennox remains one of the coolest women in music, even though age has hardened her voice a bit. Seeing her perform Screaming Jay Hawkins “I Put a Spell On You” with Hozier was pretty much worth watching the show. I love her…(and I realize that the pixie is my best do too…note to self – book haircut!!!!).

I didn’t make it through but so loved Chris Martin singing with Beck. It’s cool that Beck snuck under the radar and won two big awards. He’s so talented and while I don’t always love his stuff, I totally respect his genius. And I love Chris Martin’s voice!

1. LIVING FOR LOVE – Madonna
2. LITTLE RED WAGON – Miranda Lambert
3. MORNING PHASE – Beck
4. GOOD KISSER – Usher
5. THINKING OUT LOUD – Ed Sheeran
6. MR. BLUE SKY – ELO
7. I PUT A SPELL ON YOU – Screaming Jay Hawkins
8. WHO’S THAT GIRL – Eurythmics
9. SHOTS – Imagine Dragons
10. FOUR FIVE SECONDS – Rihanna/Kanye West/Paul McCartney

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SICK AS A DOG
February 8, 2015

I’ve been completely MIA for the past week. Cole and I were both diagnosed with the dreaded Influenza A last Monday and have been holed up together in the house ever since. We missed a week of the outside world. My husband left at dawn on Thursday morning for an annual winter camping trip he does with a group of guys, leaving Cole and I on our own in our misery.

The first few days were the roughest, though around day four the flu seemed to take a turn and behaved more like a cold. The aches were replaced by coughing and snot. and the high fever (Cole’s neared 104 at one point…mine only just butted 103) dropped so that it hovered around 100-101 until it finally left us both yesterday. We were told we would be contagious until we were fever free for 24 hours…Which is only just barely now. I’m grateful my husband left when he did, before he too became stricken with this misery.

Cole was a trooper. We did very little for the first days. Even just carrying him (80+ lbs), from one room to another made me tired so we’d move and rest, a lot. We read, watched too much TV…marathons of Master Chef Jr. and About A Boy, and lots of cooking shows…When we started feeling more human, we worked on his science fair project, putting the final touches on the presentation board and his binder. We chatted with anyone who called us…mostly my mom calling daily to check in on us, and we napped.

Friday we ventured out for a quick hour to have his glasses repaired (a little accident left them with one lens popped out and one arm bent upward), and to stock up a few supplies from Target. It felt good to be out and about but we were both exhausted by the venture.

My mom came to visit us yesterday, which turned out to be the perfect diversion. I snuck out for a quick trip to Trader Joe’s for some much needed staples and then the three of us hung out watching random cooking shows and dozing. My mom and Luna crashed out together on one couch, Cole in his Chill Chair, and me on the other couch, all of us contentedly napping under blankets while the misty rain fell in the afternoon. Cole and I both appreciated having someone new to chat with and Luna loved having someone new to cuddle up with.

Today we both finally felt like the flu has left the building. Cole slept really peacefully last night and woke up in a great mood. I spent the morning getting the house in order and doing some cooking for the week, and my husband came home around noon so we had some family time too. I think we are all looking forward to a bright shiny new week. I’m definitely ready to put this past one behind me, although I am going to miss Cole when I am at work. It’s not often that we have such an extensive one on one together.

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DON’T WORRY BABY
February 2, 2015

Cole and I both apparently have the flu…influenza A. He has it much worse than I do. It came out of nowhere and hit him like a ton a bricks. He was seemingly perfectly fine Saturday and woke up Sunday with some aches and then raging fever. Now his head is full of flu, he’s contending with post-nasal drip (which is hard for him and ends up upsetting his stomach too) and a very stuffy head. Fortunately, it’s not settled in his lungs and his blood oxygen is good.

We both started Tamiflu this evening…What fun. Not exactly high on my list of fun mother-son activities!

The worst part for me is how miserable he is. He can’t articulate exactly what feels badly. I think his throat may be sore, but he doesn’t respond with any definitive affirmation. He hasn’t smiled once today…He’s a kid who smiles a lot and whose smiles mean things beyond simple joy. Nary a grin or even half smile. today It’s bad when there’s nothing worth smiling about (even when I bumped my head in the car which usually elicits huge belly laughs!). (I sometimes bump my head pushing his wheelchair up the back ramp into the car…I don’t bend down quite enough and wham!).

Times like this are when I feel most helpless. I can take care of the symptoms I am aware of and do my best to make him feel comfortable but without any feedback it’s hard to know if all of the needs are tended to. It’s hard to know if there’s more I can be doing or something special he wants from me. I’m honestly not sure he always knows exactly what hurts or what’s just some of his normal ache. He’s so used to the tire comes from working hard in P.E. and then standing in one or two classes. He used to the soreness in his hips that comes from sitting in a wheelchair all day. I’m certain he could differentiate the ache that comes from this flu from his everyday aches.

But I don’t know…which is where the helpless feeling comes in. I can only assume things and try to help his doctor assume things better than I am. I wish I could simply him tight and wait out the flu with him and that it would be enough to comfort him and make him feel better. But it doesn’t…

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