What We Love

We're kicking off summer with a trip to Orlando for the Family Cafe on Disabilities. There'll be pools and people and hopefully not a lot of rain. Cheers!

A little storm story; The young man CAN talk

Last night tropical storm Beryl blew through town (sorry, couldn't restrain myself). After Daniel was in bed, I told him to yell "Mom! Rich! Or Melody!" if he needed us during the night. Per my annoying habit, I repeated this a few times to get the point across.

I returned to my comfy chair to watch more of the local news and the weather guy getting whipped around on the beach. Pretty soon I hear a very loud and clear "MOM!". I went to Daniel's room to see him snuggled peacefully, but still awake. I acknowledged how well he follows directions, and asked a few times what he needed. He just grinned.

I thought maybe his sister was the one who yelled, because it was SO clear. I peeked in where she was typing away on her laptop. Nope, it wasn't her, and yep, she heard him holler too.

So, I went back to his room and told him how happy it made me to hear him call out for me.

This isn't the first time he's said "ma". He can do it when he wants to, but I very rarely hear it, and this time I'm pretty positive it was mom, not ma. A few years back he startled all of us, including my mom who was visiting, when he responded to my "Happy New Year, Daniel!" with a "Happy New Year!" back. As time goes by it seems like it was just my imagination. I have to remind myself that I do have witnesses.

In other less exciting news, we never lost power and our trees are intact (for the most part). Thousands in the city are without electricity, so believe me I am thankful!

Stormy Days

This is a picture taken awhile ago of the beach near our home. Tropical storm Beryl is barreling towards us.

We're stocked up and ready to ride it out. The last time we were affected by a TS we lost power for 24 hours, but some parts of the city and surrounding areas were without electricity for days. It's a good idea to have a lot of water and non-perishable food, not to mention some books and games to keep you from going nuts. My big fear is being without AC in this heat!

The Weather Channel is filming from our beach. The bridges in town will probably close (we have an ocean and a BIG river where I live) because of high winds expected to hit.

We're battening down the hatches and hoping for the best!

Everybody in the Pool!

When Daniel was a colicky baby, one of the few things that soothed him was water. We'd jump in the tub more than once a day back then. He still loves it. The "kiddy pool" below is nice because he can splash away to his heart's content with me sitting nearby. I don't have to turn into a prune for him to have a great time. I've tried several flotation options, like the ones in these pictures.

This year I'm going to try a head float like this one:

He won't be able to fall face foreward with this. It'll go around his neck, leaving his arms free for splashing (again, favorite activity), and his legs can move around too. I hope it doesn't make him feel like he's too constrained. My goal is to be in the water with him, but without the worry of him dipping his face in the pool.

Mother Love

I'm posting this picture, uncropped...the way I like most of mine. I love seeing the toys of the day in the background; the little purple cup of Melody's on the table.

Daniel was three months old here, Melody three years and three months. This was pre-seizure, before any sort of idea about what Daniel's "delays" would be. Just the knowledge that he was microcephalic, his vision wasn't developing normally, and he was not behaving at all like his sister did at that age. The mantra then was "wait and see". Nervous days of hoping, praying and fearing.

Yesterday Daniel had more seizures. I'm thinking now that the illness earlier in the week wasn't a virus, but a result of seizure activity. His seizures first manifested in 2000 with a lot of vomiting, to the point where the docs initially thought it was all GI and didn't order a neuro consult. Throwing up has been a feature of the Big Ones ever since.

I remember sitting in the hospital room waiting to see a neurologist, and when we asked about it the nurse told us the consult hadn't been ordered! It was 4 0'clock, and since Daniel's dad is a doctor (physiatrist, specialty is head injury) he insisted they get on the horn and we had the team there before 5. Daniel had an EEG the next morning, and performed his seizures on cue. (His swallow study, ordered because on-call doc was insistent it was his digestive tract that was causing him to go limp and unconscious, was normal.)

He's been well controlled for so long with Topamax that this new crop of activity has me worried. He's in puberty, and I know the risks for kids similar to Daniel when the hormones start pumping. I'm prepared with Diastat, Klonopin and praying friends and family.

I like the way Melody is leaning in and embracing her brother in this photo. She's been right there with me all week keeping watch. God, I love them.

Sick Days

We've had to take a few of them this week. Daniel starting vomiting on the way to school on Monday, and it took a good 48 hours to be eating and drinking normally (for him) again. He topped it off with a seizure on Tuesday, just when I thought he might be turning a corner.

His seizures cause him to turn a deathly shade of pale, and his eyes go completely blank. I start thinking CPR everytime.

I laid beside him a lot (really happy for the new bed at times like these). I told him over and over how much I love him, that I won't leave him, and that I'll do everything I can to help him feel better.

Yesterday, he was still weak, but getting his sense of humor back. I shared some family gossip that was pretty silly but top secret. (If he starts talking, I might be in trouble. ) He laughed the sort of insanely hard laughs where you think you might never stop. Cracked us both up.

Today he woke up with his usual smile, He's not 100% Daniel yet, but pretty close.

Respite

I spent part of the weekend at a labyrinth meditation retreat near my home. It's been too long since I've gotten away like this and it was way overdue.

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It was World Labyrinth day, and our group walked "as one at one" in the afternoon. Afterwards, I sat near the river by myself for a long time. I dozed a little, too.

The breeze, the water, the stillness and the supermoon were what I needed this weekend.

I'm home now. Daniel and my husband are both sick. I left work early to pick up my boy and laid beside him all afternoon while his stomach ailed him. Having that bit of respite is making it easier to not just deal with life, but find things to be grateful for even in the middle of cleaning up vomit.

For one, I have a boss who understands and appreciates me enough to not make me feel guilty for having to leave work early. It's not always been that way. My basic nature is that of a  homebody, so taking care of my sickly men is not something that I resent. I'm thankful to be aware that what might appear to be a drag is just life on life's terms. I don't have to resist it. It's important not to.

We Won The Lottery!

In the form of free hotel tickets for this, that is! Since the conference is being held at the Orlando Hilton, for us it's a windfall.

We attended in 2004, the kids and myself, and we had a great time. We stayed next door to the Hilton, because they were already booked when we decided to go. The pool at our digs didn't compare to the one at the big H where there were waterfalls and poolside cafes serving up cool drinks and sandwiches. No more slumming it this time, we will be going 4 Star!

I haven't seen the line-up of workshops yet, but it doesn't matter. It's been so long since I've been to any type of disability conference that it'll all be new to me. I'm nerdy enough to consider workshops a good time.

Melody was eight years old when we went to the Family Cafe last time, and she remembers the boredom of pushing Daniel back and forth in his stroller while I tried to catch a speaker/discussion here and there. This time we'll use the respite they offer so that she's not stuck with that job (most of our time was spent in the pool and at  fun stuff like the Big Dance, just so no one is judging me right now for inflicting unnecessary boredom on my child).

Orlando is close to home, so the only real expense to plan for is food. Since we are lottery winners, I believe we can afford to splurge on some fine dining. I'm counting down the days!

Calling all parents of hand mouthers!

I'm typing from my phone while enjoying an outdoor breeze with Daniel, so please forgive typos.

Daniel mouths his hands so much that he whips his saliva into a frothy mess (sorry if the visual is too much!) I have tried splints, but I feel like it's denying him sensory input that he obviously craves. I bought "spiky hands", which are rubber things that cover his hands and give him something else to mess with that protects his hands from the chafing.

Do any of you have other suggestions? It's difficult to be out and about in public when he's doing this, plus it's not good for his hands.

Help!

Caregivers and Big Sister Love

So far I'm pretty lukewarm about the caregivers we're getting from the agency I switched to. We're new at having help, so I haven't had the chance to become truly jaded yet, but geez...you'd think there'd be more to choose from.

I know, low wages and lack of training are the problem. I'm lucky we got on the waiver and have any help at all. I know.

Yesterday the girl that comes for a few hours in the morning was showing the new guy the ropes while I was getting ready to take my husband downtown for surgery (it went very well, btw, much better than expected). I made sure my daughter was also here the whole time I was gone to oversee things and let the dude do the heavy lifting.

Melody (daughter) texted me regarding the two caregivers while I was at the hospital: Mom, they're like twins. They're both quiet and boring. lol, I don't even know what to tell them. "Hey! Talking to him and playing would be great" lol, like, seriously. Let's sit here and be quiet. Sounds like a party. They're watching this really weird serious tv show. But D's fine. I never leave them alone. I'm coming in and out non-stop.

Yes, my daughter got the smart ass gene from both sides of the family, and yes, I did tell her to have them take D outside for a walk instead of sitting inside. I am so glad I have her here to keep an eye on any newbies. Daniel scored having her as a big sister. I don't know what I'll do when she graduates and moves away. Wait, that can never happen!

Just so it's clear, God, I'm looking for a much better fit when it comes to Daniel's caregivers.

A Little Help from my Friends

I decided to move my mother-in-law from the skilled nursing facility she's been in since December into a small, very nice assisted living center. The paperwork is almost done, and I can go to sleep now certain (as certain as you can be under these circumstances) that she's going to be well taken care of and surrounded by beauty and kind people.

My husband's surgery was rescheduled from last Thursday to tomorrow. After a frantic scramble to find an ER that could replace the feeding tube that came out Sunday, he'll be able to have the procedure knowing that he can let his mouth heal before attempting milkshakes again. He's scared. I'm praying.

An interesting thing happened two days ago. I thought of an old friend who I considered a mentor when I was a nineteen year old nursing student in 1981. We had small group meetings at her house once a week with she and her husband and another couple. We'd read and study the A Search for God material, then meditate. It was a peaceful time in my life. It gave me a good foundation for things to come.

I haven't spoken to her since about 1995 or so, but she was suddenly on my mind. I decided to google and try to find out if she's still alive. Her obituary popped up immediately. Her husband died in 2009, and she followed in 2010 at the age of 87.

I wrote her a little note. I thanked her for the God Calling , a devotional book she introduced me to all those years ago that has meant more to me than anything I've ever read. I have multiple copies of it on my bookshelf and have given many away to friends. I wrote a little more in my note to Penny, and then went to lunch in the employee break room.

I looked over at the table stacked with items for sale. It's been sitting there for weeks, and I've glanced at it a few times. This time I noticed something I hadn't before. A beautiful brown book with the engraved title Jesus Calling.

I read the intro, and the author not only mentions the influence of the God Calling book in her life, but Catherine Marshall's Beyond Ourselves. Both books are meaningful to me. I even included Catherine Marshall in my acknowledgements section of the book I wrote in 1994. I have a long history of thanking those that have passed over!

I asked our bookkeeper if I could order a copy. She said that the order was already faxed earlier in the day, but I could have the one on the table unless the distributor happened to bring along an extra copy the next day when he made his delivery.

I found the salesman sitting with the box of orders the following afternoon. "Did you bring an extra copy of this one?" I asked. "Yes, in fact I did bring one extra with me." "It's mine," I told him.

Wow. This stuff never ceases to amaze me.

I thanked Penny again for continuing to help me and point me to good reading material. Then I had a strong inner push to make the changes for my mother-in-law that I mentioned at the beginning of the blog. I do believe Penny had something to do with that. I just do.

True friendship never dies. Thanks again, Penny, wherever you are! I believe I'm ready for what's next.

A year of blogging

It was a year ago today that I started this blog. It was in March that we started having frequent daily help with Daniel for the first time ever. It was spring break, just as it is now, and I was enjoying my first year working for the public school system as a diabetes clinic nurse. Life was definitely getting simpler.

A few months later, my husband and I no sooner celebrated a year of marriage and he was diagnosed with cancer. There have been some rough days since last July 7 when the docs told him his sore throat wasn't an infection. But he is now cancer free. Not pain free, not able to eat yet, but the cancer cells are gone. On Thursday he'll have another surgery to remove areas of his jaw that the radiation damaged.

Once he recovers, the hope is that he'll be able to eat again with a jaw that doesn't hurt. That's the prayer.

There is a lot to be grateful for this spring. I took Daniel to the beach on Sunday and as we strolled I thought about just how much we have to be thankful about.

It's easier for me to be happy when he's smiling.

Dealing with the Rebel Yells

In 2010 we finally got on the state waiver for disability services. For the first time in over a decade, Daniel got some help with his daily stuff from someone other than me. I know he needed a break from my tired old self, and I needed to rejuvenate so as not to become a complete slug.

So, we began to separate a little bit. I took a few weekend trips, always no more than two nights in a row. The caregiver told me that by that second morning he would start to crank up and let her know that he was ready to get back to his usual routine.

Last week we got a new care provider. It happened suddenly, but I guess it was time. Our new person is a bit, shall we say, lethargic? Mama's not diggin' it.

Tonight I started thinking about what it would be like if Daniel were just a little more well behaved when we're out so that having someone here isn't such a big necessity. After all, he's gone pretty much everywhere with me his whole life. In the very early years, I didn't care if he yelled in church, or squealed in restaurants. With time I did care. I just handled it.

I would take him out of whatever building we were in, walk with him, put him on my lap, massage the sides of his mouth (did this vigorously on an airplane a few years back when he was doing his Rebel Yell at the top of his lungs). But I always remained committed to having him included in almost everything we did. Movies, nights out to hear Rich play, swimming, parties, church, whatever.

My parents helped me in this. They don't lose patience with Daniel when he gets antsy and starts to loudly whine or let out a scream. It's easier for me to roll with it when they're around. Unfortunately, there's about 1,000 miles between us, so those times are not often enough.

Lately I've felt that I'm just done. I don't want to struggle with him in church or leave him sitting in a nursery at age 13, so I don't go anymore. I've gone out to fewer and fewer restaurants and public places with him. The other night we all went to a movie, and I tried everything to keep him happy until I just left early and sat in the car.

Tonight I talked to him for a long time as he was falling asleep. Edgar Cayce called it pre-sleep suggestion, and I've used it a few times on myself. Sort of a hypnotic kinda thing. I gently repeated over and over that he goes with me to public places and he's happy and quiet. I talked on about specific places and also threw in that he walks well when we go out together (he can walk, but prefers to be pushed in his wheelchair),

I don't want to drag him places that he doesn't enjoy, but I really think it's better for him to be out with us as he has been all of his life than to sit at home with a half-asleep body he's not related to (when I fall asleep it's different.) Yes, we need reliable help, but I don't want to feel so desperate to get away without him.

His sister thinks maybe it's part of being thirteen, and that all kids his age are pains in the ass. That's probably partially true. But we've been dealing with sudden outbursts of noise forever. It's like an alarm clock that goes off randomly. I think he can learn to control it with enough encouragement. Or maybe I'm just dreaming. Either way, it can't happen if we don't try.

Here's the video I made when he turned twelve. That boy is my heart. I want him to have a good life.

Small Stuff

I've had a few troubling days this week, but change is coming.

Daniel meets his new caregiver tomorrow morning, and hopefully March will bring a "new beginning, fresh start, the next chapter," etc. etc.

Rich has another surgery coming up in a couple of weeks, and ditto to all of the above trite statments. After all, they're overused for a reason.

One good thing. This morning when I went to the cafeteria to fill the ice bucket, a kindergartner who was sick a couple of days ago came up and hugged me and said, "I'm better, Nurse Carolyn!"

Also, Friday I will be out of the clinic accompanying my students with diabetes on a field trip to the zoo. There's nothing like little monkeys to make your week better.

It's almost springtime...

Looking for Help

The following is a note I posted on Facebook this morning. I am determined to find someone who fits the bill!


Recently I hired an agency to provide respite care for Daniel. That company is Pediatric Services of America.

Daniel has a wonderful care provider who gets him ready for school every morning so that I can work and support the family, but she isn't able to do all of the hours that we have available. I need weekends and evenings covered, and I really want to find someone who feels drawn to do this because of a love for kids with unique needs and not just for monetary reasons.

Daniel is non-verbal, but he gets his point across. He walks with AFOs and someone beside him helping him so that he doesn't fall. He has a wicked sense of humor (cracks up when his sister gets in trouble).

I'm looking for someone who is strong enough to lift him in and out of the bathtub, wheelchair and car. Someone who has a sense of humor, is kind, honest and dependable. Most of all, though, I need someone who can find ways to keep him engaged in life, doing fun things. He loves water, so pool dates would be part of the gig. Long walks are another favorite. This isn't a sit around while he's bored out of his mind kind of job. I'm looking for someone who is excited about the work, and ready to commit to helping my son be up and out doing the things he loves.

If this prospect appeals to you, you can message me and I'll put you in touch with the agency. They will interview, screen, train and hire you. They take care of your paycheck and that end of things.

Thanks!
Carolyn

Quiet Times

Melody's been reading to Daniel almost every night for the past couple of weeks. I love the way he's peeking around to watch. As I listened to her read, the words from a Billy Joel song came to my mind, "These are the times to remember, for they will not last forever," and I snapped a picture to preserve it.

Monday Drumming

It CAN be done

I read Nicola Schaefer's book about her daughter when Daniel was a baby, and I wrote about her impact on me here. Here's a video clip of her talking about her life in Canada. Catherine is my age (50) and living in her own home with supports.

What's Happening Here

I spent (financed) big bucks on a Tempurpedic mattress for Daniel a couple of months ago so that I could move him out of his crib and into something large and comfy. The thinking was that squirm worm would be less likely to end up on the floor due to the cushiness of the mattress and the way it makes you want to stay put as you sink in.

Well, he slept at least part of the night on the floor next to his bed last night. I found him there this morning curled up. Looks like his super rolling powers are going to necessitate a rail of some sort. Although, one morning he was at the end of the queen size mattress nearly ready to roll off. It's close to the floor, so he can't get injured, but it's no fun sleeping on carpet.

In similar news, my mother-in-law has been in a nursing home since she fell on Christmas day. She'll be coming home Monday and we're in preparation mode trying to get all of the things she'll need to keep her from falling again. My step-son will be rooming with her, we bought a shower chair, toilet lift, and dusted off the walker that hubby used when he broke his back. Prayers for her safety are welcomed.

Speaking of my husband, he was pronounced cancer free in December, but now he has a new diagnosis as a result of the radiation that rid him of it. Osteoradionecrosis. Areas of his jawbone are dying. He's in a lot of pain and has to have 20 hyperbaric oxygen treatments followed by surgery, and ending with 10 more hbot. Again, prayers are appreciated more than you know.

My former husband and I owned a hyperbaric oxygen clinic that's now defunct. In many ways my life is full of irony.

I was able to meditate this morning while everyone slept, and I do feel the strength of knowing that I can't control any of this, and I can and will survive it.

That's my update. Feel free to appreciate your own bundle of troubles as you go, "Damn, that sucks!" They say if we put all our problems in a pile along with everyone else's and were told to choose, we'd keep our own. I can see that.

Time to keep on keeping on!

The Key to Survival

In past posts I've talked about my fantasy of communal living for families who have kids with disabilities. The happenings at L'Arche are always on my radar. I also found Noah's Ark in Florida during one of my web surfs.

Both have a lot to offer. The problem is that they are for adults with disabilities who live away from home. My real interest is in a place that is created for parents and kids to live together in a community of like-minded people. Hence the commune image that won't leave my mind.

When Daniel's big sister was a baby, I got involved with the Waldorf education program in my city. I hung out with a group of moms who were part of the original initiative to get a school started here. I loved it.

Waldorf living means (in part) no television, specific types of toys that emphasize natural materials, and a focus on play for the young child rather than academics. It's tough to live in the real world and maintain such a strict lifestyle, but worth it if you can manage.

I incorporated some of the ideas I learned in my Waldorf days while Melody was a toddler, but it gradually went by the wayside and my kid watched Disney movies and played with Barbies like everyone else in the neighborhood. I didn't have the commitment it took to carry it out, and her father was not really enthusiastic about wooden toys and the absence of cartoons. (Still, until just a few months ago, Daniel slept on the lambs wool that I bought from one of their catalogs, and our kinder harp is in the living room next to the piano.)

Anyhow, 16 years later I discovered that Waldorf has a program for kids with disabilities. The one that intrigues me the most is this one. The downside to the program is that it's a residential school, not an intentional community that would include families. I like what they're doing, though.

I guess my vision is of a L'Arche/Noah's Ark/Camphill School that is made for families. One of the hardest parts of raising a child with multiple disabilities and unique medical needs is finding good help so that it's not all on a parent's shoulders. The best times for my family are the ones when my mom and dad are with us. We share the work. We enjoy Daniel without getting burned out or boring him. It's because we are doing it as a team, and everyone is fully invested. (And we love him more than life itself).

My dream is to lessen the fear of "what happens when I die" by finding or creating a place that eliminates the isolation that exists in our separate houses with our friends and family spread out over the map. For me, sending Daniel to live elsewhere is unthinkable. I understand that it's necessary for some parents, and I appreciate the agony involved in making the decision.

How beautiful it would be to live our days enjoying our kids with the support that assisted living gives. Forget about agencies and paid care providers. I want people around me who are in Daniel's life not for the money, but for the relationship.

Idealistic? Probably. But I really do think it's key. Right now I don't know where to start to make this dream real other than by giving it lots of time to incubate. Oh, and put it out there so that any of you reading who share these thoughts and want the same things can add your .02.