Archive for the ‘cerebral palsy’ Category
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 »
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 »
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 »
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.
Posted in cerebral palsy, Cooking, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, cooking, differently abled child, family life, life | Leave a Comment »
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 »
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…
- Ways to Improve Your Child’s Self-Esteem
- Clinical Stem Cell Trials on Children with Cerebral Palsy
- The Moral Bucket List
- I love this idea! A compound of sorts…
- Anything to keep my mind sharp!
- Why Charlie, our cat, will be Cole’s best post-surgery nurse
Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, Curiosity, differently abled child, family life, life, parenting | Leave a Comment »
SHOUT
May 18, 2015
A continued frustration in our family is Cole’s unwillingness to step up his communication at home. He’s frequently moody and unhappy about his choices at home either during the early evening hours after school or on weekends when we’re trying to balance getting errands run, taking care of little home projects, homework, and fun. He’s often whiny and angry and rarely willing to take the time to try to communicate exactly what it is that is bothering him.
I understand that running to the grocery store and Target to stock up for the coming week is not the ideal way to spend weekend time for a thirteen year old boy. I do. I also understand that hanging out with your parents may not be the end all be all either. However, whining, teeth grinding, and angry grunts are no picnic either. The fact of the matter is that we’re frequently bound together on the weekends even for the fun activities and when one of us is non-communicative weekends often become unpleasant.
The frustration for Dan and I is that Cole has means to communicate, beyond his ability to convey things without words, he has his Tobii (eye gaze voice output device). Of course, he refuses to use Tobii at home. I don’t know if, by the weekend, he’s just cooked from the effort output all week at school, or if he’s just stubborn. Well, he is stubborn, but I’m not sure about in this circumstance. The trouble is during the weekends, he also boycotts answering questions even those requiring a simple yes or no, two words he’s mastered.
His refusal to communicate makes all of our home time more stressful and anything but relaxing. It makes everything we attempt to do somewhat unpleasant. Even when we successfully do something fun or accomplish an errand without this behavior, it reappears as soon as we leave something and head home. It’s like he hates home, except I know that’s not the reality. I understand he’s sometimes sad that something is over, but it doesn’t warrant the behavior. We try so hard to illicit answers and to try to make things all right, but lately it rarely seems to work.
Nothing is more heartbreaking than seeing your child unhappy, and nothing is more frustrating than seeing that he’s not willing to help himself. His stubbornness and misery get in his way and he just can’t seem to shake it. I don’t know if it’s a teen topsy turvy mood thing or if it’s more endemic than that. I wish he would let us in on the secret. I wish he would trust that if he tried to communicate with us we’d listen.
Posted in cerebral palsy, Conversation, Family Life, Special needs parenting, Teenage angst | Tagged: cerebral palsy, conversation, differently abled child, family life, life, parenting | Leave a Comment »
It’s Mother’s Day this Sunday and I’m looking forward to a relaxing weekend with Cole. My husband has gone to Hawaii to spend the weekend with him own mum so Cole and I are on our own. It’s been that way for most Mother’s Day as my husband used to attend the Cannes Film Festival and was always in France come Mother’s Day. I’m not bothered by it since Cole is who makes me a mom.
We’re looking forward to a really relaxing weekend together. The weekend starts a little earlier than usual since I’m on pickup duty. Cole and I are planning to hang out with my mom tomorrow. He needs new eyeglasses and is keen to have her help him decide on a pair, and then we’ll probably lunch. He wants to spend the afternoon just kicking back at home. Sunday he’s taking me to a matinee of the Ultron Avengers movie…and then we’re meeting up with extended family for dinner. A weekend of fun, and nothing. Perfect.
I spent last weekend in La Quinta with four other moms. Our second moms get-a-way. A few years ago a few of us went to New York to support one of the tribe who spent the summer acting in a play, and then this desert weekend, where we intended to do this and that but actually ended up mostly finding ourselves engrossed in conversation, after conversation…oh, and some nice meals and vino. It was a perfect segue way into this Mom’s day weekend.
I’m blessed to have a tribe of women who I can get lost in conversation with and find myself standing taller afterward. I find myself in awe of so many amazing moms I know. We all share the goals of providing our children with the best tools we can. We share the hope that our kids will be kind, strong, generous, bright, respectful, interested and interesting. We foster independence, self-reliance, and self-respect in our children. We love unconditionally, challenge, and support our kids whole-heartedly. We have ready hugs when needed, and are learning when to give space. We share our trials and tribulations and successes with the hope of being inspired, supported or educated by one another. As I said earlier, I am blessed!
Here’s to all of the amazing moms, mine included, in my life. Happy Mother’s Day to you!
Posted in cerebral palsy, Family Life, Friendship, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, Friendship, parenting | Leave a Comment »
I had a realization this past weekend that I’m not entirely proud of but so relieved that I had it. One of those reflective moments where you suddenly realize “Oh, wow”…
My husband was traveling a few days this past week and I handled the driving Cole to and from school duties. I was lamenting the morning drop off because my observation of them was that (besides Cole being terribly embarrassed to have his mom bring him into school – typical teenager!), most of the kids just sort of ignored him as we pass by or settle near his classroom waiting for his para-professional to arrive and take over. It’s like they just don’t see him.
So I was discussing this with some friends over the weekend, expressing that it really saddened me when I realized that Cole sort of ignores everyone else too. He’s not engaging them in conversation or saying “Hi” to any of them despite having the ability to do so with his Tobii. He has a voice that he often neglects to use and conversation is not something that he needs to be dependent upon others to start. In fact, it should be something he’s doing more often. He needs to be engaging his friends with interest and query. It’s not their responsibility to always come to him and ask him questions without reciprocation.
As much as I hate to admit it, but it’s so easy to see your child as the one left out because they’re different, and admittedly it does make it harder for others to engage with him, but the reality is he also has to show he’s open to conversation and interested in others as well. It’s not something we’ve fostered or a skill he’s strongly developed because, cringe, we were focused on why others weren’t engaging him. I’m grateful that light blub turned on and that it’s now something that Cole can work on developing stronger conversational skills and understanding.
I feel like by him initiating conversation or simply greeting friends and teachers when he sees them as opposed to silently rolling by, he will open himself up to more positive and intention interactions with people, and will deepen friendships by actively showing greater interest in his friends. He can’t be reliant on them to be the sole conversant. The reciprocal conversation is so much more satisfying for everyone.
I need to be turning that mirror on my boy and myself a little more often…
Posted in cerebral palsy, Conversation, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, conversation, differently abled child, family life, life, parenting | Leave a Comment »
I love your brain 