TODAY
September 1, 2015

Today is the first day that Cole’s been without a parent since having surgery on June 18th.   Today is his first day of 8th grade. Today is the first time he’s been out of the house for more than a few hours since the surgery. Today is the first time someone will be caring for him who is not his parent. Today is the first day both my husband and I left the hose for our respective jobs to work in our respective offices. Today is a highly liberating day for the three of us….

The first paragraph was written on August 17, 2015: I couldn’t muster the energy to finish the entry but promised myself that I’d return to writing September 1st. So here it is September 1st, another Today.

I feel like I fell off the planet when Cole went in for surgery. Despite continuing to work, Monday, Wednesday, Friday at home with a caregiver managing Cole’s primary care and entertainment, and Tuesday and Thursday at the office, where I got to escape some of the claustrophobia that accompanied the summer of recovery.

During the summer, which felt incredibly long, I grew to loathe my bedroom. We had set it up for Cole since it’s roomier, has an overhead ceiling fan to help with summer heat (no fun if you’re wrapped in full leg casting) and he fit on the larger bed more comfortably. Cole spent a month of summer in the casts, and then moved into what we, very mistakenly, thought would more comfortable and manageable knee immobilizers and a back & hip brace. Not so. He has to wear those 24/7 for two weeks and now just at night.

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It wasn’t the summer I’d imagined when preparing for the surgery. I had hopes that we’d be able to provide him with lots of visits and time with friends but unfortunately that just didn’t happen. His life stopped moving for two months, while friends were busy with their summer fun. It’s understandable and reasonable, but still very hard to explain to your lonely child.

One of the highlights turned out to be the letter campaign Just prior to Cole’s surgery I initiated on Facebook. I challenged my FB friends to write to Cole. A letter, card, postcard, list of favorite books, movies, music, anything, and he would write them back. He received nearly 200 pieces of mail, including some thoughtful gifts, and we spend a lot of time writing everyone back. We had cards from friends, family, coworkers, notes from various countries like Hungary, Japan, the UK, and Belgium. It was overwhelming and fun! A great non-tech, no screen, activity!

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And then as long, and monotonous, as summer seemed, it passed and school’s back in session and life has returned to some sort of normalcy. It feels fragile though, like we’re on a tightrope teetering from side to side to maintain the semblance of being okay.

But I’m not sure that we really are.

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BOX FULL OF LETTERS
June 26, 2015

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We arrived home from the hospital to a pile of letters and packages addressed to Cole.  My letter writing campaign idea seems to have struck a chord.  Cole’s received postcards from Hungary, Japan, and Minnesota.   Lots of friends have sent cards, notes, and little presents.  He received a little pink rubber duck with duck jokes (He loves jokes!) from one of my coworkers and lots of other cool things.  The teenage son of a woman I went to middle school and high school with sent some special personal things, and wrote a beautiful letter.  From the looks of things Cole’s going to have lots of pen pals this summer and he couldn’t be happier.

It’s interesting to see how positively people responded to the call to letter writing in this age of electronic everything.  I love a good letter and adore receiving postcards.  Cole does too.  There was a time when he spent a lot of down time writing colorful letters to his friends so they would get mail.  I think for him the impetus was a Little Bill episode where Little Bill’s kindergarten class learned about sending mail.  While I greatly appreciate the ease and convenience of email and texting, there’s something so much more personal about actually putting words to paper, sealing them in an envelope and sending the letter off to a treasured recipient.

Among the notes and treats, Cole received some great suggestions of people’s favorite movies, music and books.  A few friends drew some wonderful pictures and he received lots of love.  We all feel it and are so grateful and appreciative of the effort and kindness.

We’re having fun contemplating responses and finding fun cards and papers to send notes back.  We, of course, would love to have some people keep writing…old fashioned pen pals!  it’s such a great way to get to know someone and to form a connection that otherwise wouldn’t exist.  It’s pretty amazing…

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HURT
June 24, 2015

We’re home after four nights spent at Children’s Hospital LA (CHLA) following Cole’s nine hours long orthopedic surgery. The surgery itself went well, although we had hoped that his left hip would be able to be repaired, something that would enable him to continue to bear weight and walk as much as he wants, there was too much damage to the femur so they had to do something called a McHale procedure, whereby his femur was trimmed and reversed so that he won’t have pain from the arthritis. It was successful, but the sadness of it is that Cole won’t be able to continue to walk as much as he likes to or to bear weight for long periods of time.

While the surgery went well, Cole’s breathing took several days to bounce back from the effect of being under anesthesia for nine hours, which led to water on his lungs that compromised his breathing. It was frightening to watch him desat every time his support oxygen was lowered. He’s never had breathing issues so to have this new worry felt like too much. I spent each night just listening to him breathe, holding my own breath when his faltered.

Thankfully it resolved itself and we brought him home on Monday afternoon. We’ve spent the last two days trying to work out a routine for him. He has to be moved and repositioned every few hours to prevent his skin breaking down. He has full leg casts with a bar fused between them at the ankles, which makes lower body clothing problematic. We’re also still trying to manage the pain and the pain meds. While we’d never stop the narcotics while he needs them to be comfortable, we also don’t want him to become dependent upon them. Tricky business.

It takes two people to move or transition him and to tend to his personal needs. I’m not certain that this will change once he’s more comfortable. He’s heavy with the additional weight of the casts and the balance is strange with them too. At the moment it feels like it’s too much for one person to handle alone which feels almost claustrophobic. It’s still new and we’re still working out the kinks. The biggest concern is that Cole is comfortable, pain free, and entertained. I can’t bear to see him hurt. My heart aches when I see him wince or flinch when he’s moved or just simply lying down.

I know each day will find him just a little stronger, and that we’ll be a little better at moving him and taking care of him. I just want it to be the end of summer and to hear his surgeon say she’s removing the casts. There’s still more after the casts come off but it’s more manageable and his body won’t hurt anymore.

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POSTCARDS FROM PARADISE
June 17, 2015

Cole’s surgery is tomorrow. We’re all frayed and fragile but doing our best to be positive and to keep Cole from seeing our nerves peeking out. I do know that it’s all going to be fine. He’s done it before, has a great surgeon, will be in a great hospital, and we’re more prepared for recovery this time around, having a better idea of what to expect, need, and how to care for him in the massive spica casts. And I know time goes quickly so it will soon be a distant memory.

We’ve had such an outpouring of love and support for him and us as we get closer to tomorrow. It led me to come up with a fun campaign that I hope anyone who reads my blog will join in on. I’m asking people to send postcards, letters, lists of favorite songs, movies, a favorite picture or art, poems, whatever you like, to Cole during his summer of recovery. If you include a return address he will write you back. Cole loves receiving letters and mail and is also a very avid letter writer himself. He’s a lo-fi correspondence kind of guy. He adores mail and mailing.

It’s a positive activity and will be so fun to see what kind of treasures he receives. I’ve promised to help him collect some fun papers and stickers and trinkets for his own sends. Stamps have been ordered! It’s okay if you don’t know us personally. If you’re reading my blog, you have insight to our family already and this fun project will bring us all slightly closer.

I’m planning to save all of the mailings in a scrapbook for Cole so he can share it with friends and revisit the letters, etc. when this is over. It will help create some positive, special memories of his “bummer summer”. So I implore you, grab a pen, paper (postcard, whatever) and a stamp and send Cole some joy! I promise if you include your return address, you’ll receive some back! xoxo

Cole Griffiths
14540 Hesby Street
Sherman Oaks, CA  91403

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MOVEMENT OF FEAR
June 15, 2015

My mind takes me to dark places when I think of Cole going under the knife. His surgery is just three days away and we’re all feeling the stress. Cole’s anxiety is palatable and my husband and I are both on edge.

The pre-op and admissions are done and all that’s left is arriving day ready to stay for a couple of nights. The surgery itself could take about ten hours. Those are the hours I most dread. I have this unreasonable, unfounded fear of anesthesia. I don’t worry that the actual surgical procedure will go badly. I worry that he won’t wake up from the anesthesia or that he’ll have a seizure and it will go badly. My brain just goes to that place when it comes to anesthesia.

I know, in my heart and head, that it’s all going to be fine and I know that the anesthesia is not the high-risk part of the surgery. It’s just my darkness. Maybe it’s just how I cope with my own fears and anxiety about Cole having surgery.

My fear leads me to do things. I spin my wheels. I spend a lot of time researching and planning and organizing. It’s one of my coping mechanisms. It helps me to feel like I’m contributing to the overall success of his care and healing. I’ve got him on doses of Emergen-C (to help boost his immune system for hospital and vitamin C and zinc are both helpful in healing) and bone collagen (helps to heal tissue and bone). I can’t say for certain that they’ll help but his doctors agree it won’t harm.

I’ve got aromatherapy spray to keep the hospital room smelling comfortable for him. I’ve been dosing the room every night before he sleeps so it will calm him in the hospital room. I’ve created a soothing playlist with lots of his favorite songs so if he’s feeling woozy and in and out on pain meds, he can listen to quiet music to help him relax.

At the end of the day, all of the preparing and accouterments aren’t going to make as much of an impact on him as having his parents there when he wakes up and by his side in the hospital room. All that will matter to him is that we’re near and that we’re doing every thing possible to get him through this surgery and the long healing process as comfortably as we can.

All that matters to me is that he wakes up and eventually cracks that sweet smile of his at me. My brain will quiet and the fear will sit still.

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HOME
June 1, 2015

My husband and I have different opinions when it comes to alternative medicine or wellness.  I have a higher interest and intrigue which he tempers with a big does of skepticism.  With Cole’s surgery looming in the not so distant future (June 18th!), I find myself researching ways to make him comfortable both in the hospital and at home for the weeks of recovery.  I’m also researching supplements that can help heal bone, joints and tissue, like tried and true Vitamin C, zinc, and bone collagen.  I’m not a quack but I do believe that supplements can be highly beneficial.  Where Cole’s concerned, my tendency is to be more conservative in my choices.

While I’m willing to try herbal concoctions and am happy to drink thick green things, I keep my research for him to things that have scientific evidence of enhancing healing.  I just want him to feel okay, keep his immune system up and for the bones and tissue to heal well.  I worry about this immune system because he’s going to be fairly immobile for nearly two months, which in itself is hard on any body.  He’s used to moving around quite a bit and loves to stand and walk and move his body.  Stagnant bodies are more susceptible to illness.

I’ve also stocked up on a lavender based sleep spray that Cole and I love.  Hospitals smell so, so, well, so much like hospitals, and they’re anything but relaxing or calm.  I’m keen to see if something as simple as aromatherapy can help him feel a little more relaxed at a time when he’s going to be anything but.

Because music is so important to Cole, I’m creating some playlists of favored songs with the hope that even if he’s drugged up and dozy, softly playing tunes that make him happy will promote some calm for him too.  I’m hoping he’ll just be in the hospital for a couple of days.  Home is a always a better place to be for healing.

That said, the same interventions will be useful at home, especially during the first week when pain management is the main focus.  I’m hopeful that a peaceful, calm, softly fragrant home will feel nurturing and comforting to him.  I sound like I’m creating a spa environment for him!

I guess in a way I am.  I just want to make this major surgery as easy on him as I can in whatever small ways I can manage.

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THE LAST SONG (Series – 5)
May 31, 2015

Below are the songs for April and May. I lost my balance in terms of my writing these past couple of months. I’m working on getting it back so I can be more consistent with my writing moving forward. Discipline, discipline, discipline…

April 2015

The April songs and artists are below:

  1. WHY DO FOOLS FALL IN LOVE – Frankie Lymon & The Teenagers
  2. SUNDOWN – Gordon Lightfoot
  3. LOST IN THE SUPERMARKET – The Clash
  4. SUNNY AFTERNOON – The Kinks
  5. SHE BLINDED ME WITH SCIENCE – Thomas Dolby
  6. WHERE IS MY MIND – The Pixies
  7. I AM THE DJ – David Bowie
  8. VOICES CARRY – ‘Til Tuesday
  9. ME, MYSELF & I – De La Soul
  10. LET’S GET PHYISICAL – Olivia Newton-John
  11. ANNIVERSARY SONG – Cowboy Junkies

The May songs and artists are as follows:

  1. TALK TALK – Talk Talk
  2. MOTHER’S TALK – Tears for Fears
  3. SHOUT – Tears for Fears
  4. WHERE IS MY MIND – The Pixies
  5. WHEN I GET HOME – The Beatles
  6. LOST IN THE SUPERMARKET – The Clash
  7. TUESDAY MORNING – The Pogues

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TUESDAY MORNING
May 26, 2015

Back to work following a lovely holiday weekend.   Starting the week on Tuesday often feels harder than on a usual Monday. Having the one extra day of a holiday weekend is just enough to sink one into total relaxation, making the Tuesday start of the week a wee bit jarring.

For half the weekend we were three and the other half just Cole and I. Saturday night we had a delightful date night with a dear friend at a local café doing their first ever “Paella Night”. Seated outside under the glow of the local business signage eating a delicious Spanish meal with yummy vino and great laughter filled conversation. Nothing better.

Sunday Cole just wanted to lounge about in his p.j.’s until close to lunch time. Then we headed off to the last baseball game of his fall season with his friend Charlotte in tow. The game was festive and fun, and Cole and his pal Joshua had quite a cheering section between family and friends, and even a few of the school para-professionals all there to support them. Cole and Char then hung out together for dinner and watched Pitch Perfect to prepare themselves for seeing Pitch Perfect 2 on Monday.

Monday we lazily got ourselves ready for a late morning screening of Pitch Perfect 2. We met up with a few (okay, fifteen or so) friends for movie and lunch and got ourselves home just before four pm. Long fun day with a gaggle of our favorite people.   Leaving us with just a bit of Monday left to have dinner, bath, neglect homework, and snuggle off to bed. Not a bad way to end a weekend.

So now I’m at work and our server is down so I’m unable to actually do any real work. Frightening how lost we are without our internet and server! My goal this week is to regain some consistency with my writing. Turns out it’s like exercise for me. If I get started and stay consistent I’m successful but fall off the routine for more than a couple of days and it’s all over. I really have to work on that with both writing and exercise!

Happy Tuesday…

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LOST IN THE SUPERMARKET (Series – 8)
May 20, 2015

Last night I made one of my favorite pasta dishes for our dinner.  It’s a pasta dish I’ve made for years and it varies from time to time but always satisfies.  Happily, last night’s version made use of our abundant crop of swiss chard and zucchini!  This is a sort of kitchen sink pasta dish.  It’s healthy, forgiving and fast!

Whole Grain Pasta with Sausage & Greens

For two:

Pasta – I like this with penne but have done it with just about everything.  Whole grain is best.

1/2 onion (any kind you have) – diced
Two mild Italian sausages removed from casing (pork, turkey, chicken – whatever you prefer or have on hand)
Two big handfuls of greens (Swiss chard, kale, spinach, super greens – again whatever you like or have)
1 teaspoon fennel pollen
1 teaspoon red pepper flakes
2 cloves of garlic – grated or minced
1/4 cup chicken broth, tomato sauce, or veggie stock
Salt & Pepper to taste
1 tablespoonish of butter (to finish)

While the pasta is cooking, add a tablespoon of olive oil to a skillet and add the onions and sausage.  Saute for a few minutes until the onion soften and sausage breaks up into small pieces.  Add the fennel pollen and red pepper flakes and stir to incorporate.  Add the greens and whatever liquid you decided to use. Once the greens wilt, add the garlic, salt & pepper.  Finish with the butter – it will slightly thicken the sauce.  Toss warm pasta in the skillet and serve.

I like to have mine with a small handful of chopped walnuts and a little bit of goat cheese crumbled over.  Dan prefers his with just a dousing of parmesan cheese.  Last night we added zucchini to the mix too.  (I added it just after the onions and sausage started cooking).  I’ve also added sundried tomatoes too, which is a great addition!

It’s super easy and always very tasty!  Definitely one my favorite weeknight pasta dishes.

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WHEN I GET HOME
May 19, 2015

I’m having a moment. A pouty moment where I wish I were somewhere else. Most of my company is in Cannes right now and I’m stuck here in my office.

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I’ve been to Cannes more times than I can count and am grateful for all of the travel I had the chance to do in my early career. I am also aware that for the most part my colleagues are stuck in hotel room or apartment offices, working their asses off for ten or more hours each day, and excepting the gorgeous setting in the evenings and great dining, most are wishing they were back home with their families, pets, etc. Despite the undeniably gorgeous locale, working a film festival is not the same as attending a film festival.  It’s not glamorous.  It’s hard work.

But I haven’t been in a very long time and I see postings here and there of old friends enjoying rose at beach restos and random events and I find myself missing it just a little bit. So I’m here, drafting contracts, pouting.

The beauty of it is that I know that when I get home tonight, there will be a kiss waiting for me from my husband and a big smile from Cole and I’ll be happy I’m right where I belong, where I really want to be.

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