parenting | I love your brain

PUT ON A HAPPY FACE
September 2, 2015

My husband is traveling for the first time since Cole had his surgery. I usually look forward to his travels because I enjoy having the time alone with Cole. We both do. It’s sort of nice to just have to focus on Cole’s needs, and mine, and Cole’s usually pretty happy to have the extra time with me so he’s super easy going.

Not so this time! He’s struggling. Since starting school a couple of weeks ago, his post-school routine is to get home and melt down. The melt down translates to tears, whining, whimpering, and stress. General upset. He can’t control it and he can’t calm down. I had this thought that he’d be super happy to have me at home early with him and to himself (he usually is) and that I’d get a different afternoon but that’s not the case this time.

Despite every effort I’ve not been successful in changing this new routine of his, although last night I did manage to gain some understanding of it. He doesn’t exhibit this behavior at school or in homework club. He holds himself together, despite being uncomfortable, sometimes in pain, tired, and nervous at school. He works really hard not to let that show at school. So he dissolves into a puddle of release when he gets home.

The only thing that seems to help is to let him soak in the bath, watching cooking videos, for a very long time…we’re talking two hours…cooled water…just leaving him be in the tub (actually on top of the water, on a bath chair that is too small for him)…and no bubbles!

It breaks my heart that there’s not much I can do for him and that he feels like he needs to present himself as being so fine in front of his peers and teachers. I don’t think anyone would judge him for having a hard time after the summer he’s had and whilst his body is still very much healing. I don’t know where his determination comes from, or why he feels he needs to put on a happy face? What is it inside him that has made him recognize that this form of survival?

It fascinates me that he can make the determination of when and where and around whom to smile for. He’s not opposed to misery while out and about in random public places, but when it’s peers, he’s loath to be anything but okay. It’s a rarity for him to cry, or fuss in front his friends, unless he’s really confident that they’ll understand or not judge him. We do have some family friends who do occasionally get a glimpse of his not so happy face, but they’re friends who have become more like family.

He’s a strange and fascinating boy. I so wish I had more access to the inner workings of that beautiful brain of his!

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, Curiosity, differently abled child, family life, parenting | 2 Comments »

TODAY
September 1, 2015

Today is the first day that Cole’s been without a parent since having surgery on June 18^th. Today is his first day of 8^th 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 1^st. So here it is September 1^st, 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.

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!

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.

Posted in cerebral palsy, Correspondence, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, correspondence, differently abled child, family life, Healing, life, parenting | 2 Comments »

BOX FULL OF LETTERS
June 26, 2015

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…

Posted in cerebral palsy, Correspondence, Family Life, Friendship, Life, Special needs parenting | Tagged: cerebral palsy, correspondence, differently abled child, family life, life, parenting | Leave a Comment »

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.

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, Healing, life, parenting | Leave a Comment »

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.

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, fear, life, parenting, Surgery | Leave a Comment »

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.

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, Curiosity, differently abled child, family life, Healing, life, parenting | Leave a Comment »

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:

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

The May songs and artists are as follows:

TALK TALK – Talk Talk
MOTHER’S TALK – Tears for Fears
SHOUT – Tears for Fears
WHERE IS MY MIND – The Pixies
WHEN I GET HOME – The Beatles
LOST IN THE SUPERMARKET – The Clash
TUESDAY MORNING – The Pogues

Posted in cerebral palsy, Family Life, Life, Music, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, life, music, parenting | 1 Comment »

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…

Posted in cerebral palsy, Conversation, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, conversation, differently abled child, family life, life, parenting | 1 Comment »

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.

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.

Posted in cerebral palsy, Family Life, Life, Special needs parenting, wanderlust | Tagged: cerebral palsy, differently abled child, family life, life, parenting, wanderlust | Leave a Comment »

WHERE IS MY MIND? (Series – 2)
May 18, 2015

I’m all over the place lately. Work is busier than ever. We have six films we’re preselling in Cannes, plus several others that have a lot of available territories that need to be cleaned up. No real complaints about there being a lot going on but my work days are full of work, and home is taken up with a somewhat needy Cole. I sometimes feel like when he has a lot of mom time (my husband has been traveling quite a bit), he then craves more mom time. I’m like a drug and he’s addicted! Ha! And there are still so many things catching my attention out in the world…

The following are some curiosities that have struck my fancy recently…

stem cells