PAIN & SUFFERING

September 8, 2015 - 2 Responses

This past weekend seemed longer than the long weekend actually was, if that makes sense. I continue to be frustrated in my inability to discern the nuances of Cole’s pain and anxiety. I find it odd that nearly three months out from the surgery he’s still in so much pain and discomfort. It doesn’t seem to be improving at all. My husband suggested we take him to see his surgeon a few weeks ago and at the time I thought it unnecessary, and he didn’t push it. Now I kind of regret it. We have a long set follow up appointment with her next week so at this point it makes the most sense to wait for that but the fact that he still seems so fragile physically, and mentally (which is a totally different beast) concerns me.

He came home Friday and cried for well over an hour. Not a whimpering cry, but a wailing, heart wrenching cry. Nothing I did helped or consoled him. He just cried himself out.

My husband was still away and friends had kindly brought a birthday party to me as it was my actual birthday. Cole was excited to hangout with his friends (their children) and to watch Pitch Perfect 2 with the gang. While the moms sat in the backyard enjoying champers and cheese, the gaggle of kids watched the movie, shuffled around the living room, talking and laughing, and Cole slept more soundly than when he’s tucked in bed. He slept through the movie, the singing of happy birthday, eating of cupcakes, and gentle hugs and kisses to his sleeping self as everyone piled out. He slept through me moving him, pajamaing him, and slept pretty soundly till morning.

Saturday we were supposed to hang out with my mom and Cole and she had plans to take me out for birthday sukiyaki (a word that Cole finds hilarious!).   However, when I suggested we start getting ready to go pick her up, he outright panicked, and continued to do so for the rest of the day. He couldn’t seem to stop himself from hyperventilating and worrying about every movement, touch or suggestion of change. He finally admitted to me that right now he needs his Saturdays so be plan free and that he only wants to hang out in my room, resting on the bed, watching TV or movies. No suggestions of going out, no trying to move him to different rooms. I don’t understand, and I don’t really like it but if he feels like it will help him regroup after the week or whatever, I’ll respect it. For now…

Sunday I managed to get him out of my room because my brother and sister-in-law surprised us with coffee & bagels, so I just moved Cole. He wasn’t pleased but he settled down fairly quickly and enjoyed hanging with them. His dad got home while they were there too which helped boost his day even more. The three of us actually got out of the house for a bit and he enjoyed some bath time.

Monday though was more of the same refusal to leave the bedroom. He just struggled to hold it together all day. It’s really starting to freak me out, and to worry me. I’m so unsure of what’s physically paining him and what’s mentally debilitating him. Both seem daunting on their own but pair the two, and throw in normal teenage hormones and stresses and then try to figure out what’s what and how to help. I honestly can’t. As a mother, it’s the worst feeling in the world to know that you simply have no answers, solutions, or comfort for your child.

We’ll see what the week brings. Lately he’s done so well during school hours, and at homework club, and then falls apart when he returns home. I tried finding solutions to that last week with some success, but I’m not confident that this week will be the same, though I’m not sure it could be any worse. Mustering a little optimism, maybe it will be better for him…

Categorized in cerebral palsy, Family Life, healing, Life and Special needs parenting
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HERE FOR YOU

September 3, 2015 - One Response

I’ve been solo parenting for a week now with a few more days to go while my husband is in Santiago on business. After the strange summer we had, all being on top of one another for a full two months, and the quick fire return to our work/school routine, I found myself kind of looking forward to having a little Cole/mom time.

Historically, when my husband travels, which is fairly consistent throughout the year, Cole and I have a pretty easy time. I’m not keen on the driving aspect of it (I’m driving him to school and myself to work – a minimum of 2 hours in the car each morning and then the same at the end of the day!) but love being the one to bring him home from school, go through his day and backpack, run through school and homework with him, and finally have some hangout time together. I usually miss this part of his routine because I get home from work two hours after my husband gets Cole home from school.

The past days have been much harder than I anticipated. The fact that Cole is still so utterly emotionally fragile following the surgery and summer makes everything harder. He’s less inclined to even attempt communicating and collapses upon arrival home.

Friday, the first day of our solo time, he cried for nearly an hour and I was never successful at finding out what was wrong. Even during the weekend, he was clingy and anxious, but I did eventually learn, after many conversations, that one of the reasons he has a hard time when he gets home from his school day (8am-5pm), is that he during the day at school, with his friends and teachers, he makes every effort to not let anyone see that he’s in pain or uncomfortable. He puts on a smile and works his way through the school day seemingly fine. So when he gets home, all of that held back anxiety, pain, and energy just spills out, uncontrollably.

Monday I learned another reason. Prior to the surgery, he spent a good part of his day on his feet in a gait trainer, either walking or just standing, bearing weight. Now he’s spending the entire day in his wheelchair and his body is stiff and sore when he gets home and is moved to his chill out chair or to a bed to sit on. Because he seems to find relief or comfort from wearing the knee immobilizers at night, I suggested we try putting them on right when he gets home to see if that helped with the transition. Voila! Mom’s a genius.

We’ve now had two nearly tear free, whine free post school evenings and I’m looking forward to a third tonight. Even more so, I’m looking forward to taking him to physical therapy this afternoon. He’s been doing it for a few weeks now as prescribed by his surgeon and I haven’t been able to attend. I took him to the eye doctor Tuesday afternoon, which also felt like a treat.

We have a winner! The new glasses...

We have a winner! The new glasses…

Doctors appointments and therapies used to be my arena before I started working full time, and before my husband started working five minutes from Cole’s school. I miss the connection with Cole and his doctors and therapists.

I’m glad to have the chance to support him this week.  Even when it’s hard, I treasure my one on one time with Cole. It gives us a chance to reconnect and share the simple and not so simple every day moments that when woven together bond us.

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
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PUT ON A HAPPY FACE

September 2, 2015 - 2 Responses

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!

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
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TODAY

September 1, 2015 - 2 Responses

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.

Categorized in cerebral palsy, Correspondence, Family Life, Life and Special needs parenting
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BOX FULL OF LETTERS

June 26, 2015 - Leave a Response

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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…

Categorized in cerebral palsy, Correspondence, Family Life, Friendship, Life and Special needs parenting
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TEARS OF A CLOWN

June 25, 2015 - One Response

Cole is a funny one. He can be struggling with pain and discomfort but if I bang my toe on something whilst making my way around the obstacle course that was once my bedroom, jovial laughter replaces his whining and tears. Hearing someone say “beautiful” on TV has the same effect, and seeing someone kiss often does as well. He somehow manages to distract himself out of the anguish and momentarily finds humor.

As I tried to put him to sleep tonight, he was fussing and feeling a bit achy so we gave him a dose of valium and some Tylenol (really working to get off the oxy…) and as he and I waited for the meds to take effect, we noticed that we could see the sunflowers I picked for him today from our garden even in the dark. I said something about them being so beautiful and he laughed a little. Then I broke into made up lyrics about the flowers smiling at him to the tune of our song, Coldplay’s Yellow.

My little ditty led to body shaking hysterical laughter. Yes, sometimes I can be really funny…It’s the first great laugh he’s had since last Thursday so it was amazing to hear and I feel like somehow it relaxed his body enough to allow him to begin to contemplate sleep without the anxiety he was having before the laughter.

I hope he sleeps peacefully tonight, dreaming of sunflowers smiling and laughter. He’s had a few rough nights since we got home from the hospital so a good nights sleep would be beneficial to him and to his Dad and I (when he’s not sleeping, no one is sleeping…and hormonal woman that I am, resuming sleep after be awakened for any period of time just doesn’t happen…I can’t figure out how to will myself back to sleep)…

Sleep little darling, do not cry…I will sing a lullaby…(about smiling yellow sunflowers)…

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Categorized in cerebral palsy, Family Life, Life and Special needs parenting
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HURT

June 24, 2015 - Leave a Response

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.

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
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POSTCARDS FROM PARADISE

June 17, 2015 - One Response

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

Categorized in cerebral palsy, Family Life, Friendship, Life and Special needs parenting
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MOVEMENT OF FEAR

June 15, 2015 - Leave a Response

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.

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
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HOME

June 1, 2015 - Leave a Response

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.

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
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