Thursday, December 13, 2012

Making a Better Life

I am finally taking the leap from the waiver that we've been receiving services through for almost two years to the 'Consumer-Directed Care Plus' option. This will put me in charge of monthly budgeting, timesheets, hiring, training, and purchasing for Daniel. It means far more flexibility in terms of getting people on board to assist him. I'll no longer be required to use an agency or an APD employee. I can hire family, friends, or whoever else I choose.

Since I have no family in Florida, and no friends that can act as assistants for Daniel, I'll be hiring people I don't know. My add on is  entitled, "Energetic, Happy Caregiver Needed". I've had too many blah, tired, uninspired workers through the agency these past nine months since losing our first full-time care provider. We had one who was outstanding, but her last shift was Sunday. She's moving to Virginia and we'll miss her terribly. She was the epitome of happy energy. From the moment she walked through the door until she left each Sunday, she was tuned in and focused on Daniel. She truly loved spending time with him, and she was good for all of us.

My goal for 2013 is more activity and more fun for Daniel. In his nearly 14 years on earth, it has been mostly me, my parents and daughter who take him everywhere and include him as much as possible. For the past year this has dwindled. It just feels like too much work at times, and he doesn't act happy when we drag him to church or restaurants. Sometimes going out to eat is good for him, but usually it's not. This means that one of us stays behind with him at home while the others do their thing. We're not as fired up about day trips anymore, either. Burn out. It's in the house.

I want to enable him to do the things that HE enjoys on a more regular basis. He loves to be outside. Right now we are constrained because the agency workers are not allowed to take him anywhere by car. If we find the right people, trips to the park and the beach will be much more frequent.  We live in the sunshine state, and the big advantage to that is being able to give him the out of doors. It doesn't happen enough when you're tired from being the only one on board.

So. Big hopes for changes that will make life better. That's my Christmas/New Year's wish.

Tuesday, November 27, 2012

For Mom, With Love

We buried my mom on Saturday, two days after Thanksgiving, twenty-two days after she started seizing in the hospital following a very confusing illness.

Most of her close family were with her the day she died. My dad, my brothers and I, both daughters-in-law, half of her grandchildren, her sister and brother and their spouses. We all gathered at Barnes Hospital in St. Louis, where she’d been flown by helicopter a week and half earlier from a hospital in her hometown in Decatur, Illinois.

I arrived in Illinois the evening before the transfer. Her seizures were about twenty minutes apart. She was sedated, but I was angry that enough meds weren’t given to knock them out. She was on a vent, after all, so there was no danger of depressing her respirations. In St. Louis they did manage to stop them within hours of admission, but she never really woke up.

My mom was healthy. She went to Branson, Missouri in early October with my dad for a mini vacation. We thought the illness she experienced when they got back was due to the hamburger she ate on the way home. Both she and my dad didn’t feel well after eating that night, but she was very sick. Next, it appeared her gallbladder needed to come out, and it did. The surgeon was puzzled at her labs and her overall clinical picture.

Her kidneys failed, her platelets dropped. She underwent numerous plasma exchanges. She believed she was going to die, and made peace with God and talked things over with my dad. I thought she was overreacting and would get well in time. In the back of my mind, though, was the overwhelming feeling of just this thing happening that I had when I was visiting them in July.

I was lying in bed and started to cry. The thought of losing her was strong. Awhile later she came into the room and told me to get up because my dad was having chest pain. My first thought was that my intuition was confused and it was he that was in danger. Turns out he was fine, just having some heartburn.

My dad and I stayed near the hospital in St. Louis the entire time she was there at Barnes Lodge, a place for families. I’ll never forget the unity of purpose that we shared. I love my father so much. He is truly my hero, as corny as that sounds. He is full of optimism, love and grace. His love for my mom will be in my mind and heart forever.

This past week my family gathered together. I feel so lucky to be a part of them. My brothers and their wives, my nephews, and my aunts and uncles are all such great people. Truly. My mom must be thrilled to know that over 200 people came to her visitation, and her funeral was beautiful. My nephew gave a eulogy, and the minister read my tribute to her (I have a horrible fear of public speaking. I’d rather be in the casket than at the podium!)

Tim talked about golf and how she always worked on her short game, making the putts and getting her score right up there because of it. That’s how she supported us, too. She put in the time behind the scenes doing the small things that made a big difference. I know she was listening and probably beaming that her grandson gave her such kudos for being the quiet woman she was in this life. We’re who we are because of her.

It hasn’t really sunk in yet for me. I know that the days ahead will be tough for all of us, and I hate being down here in Florida while the family is 950 miles north of me. I hope my dad decides to spend some of the cold months here with us. It’s up to him and whatever he feels will be most helpful to his healing.

My mom and dad adore Daniel. I am so grateful that her example of caring for him has really affected Melody. She took care of her brother while I was gone (with the help of assistants and Rich). The Thursday before mom died Daniel fell while the caregiver had him in the bathroom. He lost his other permanent front tooth. I’m still unclear about how it happened, and I haven’t had time to look into the details other than to know the person responsible was apparently not strong enough for the job.

Melody took over and showered him with love, hovering over him until I flew back to Jacksonville. We all drove back to Illinois together, and she continued to care for him and for my dad. She made sure her grandma’s kitchen was as pristine as she always kept it. Again, I know my mom is proud. I am.

I feel my mom’s presence, and I am thankful that I have a completely secure belief that her soul is still with is. I don’t know how people get through it without that knowledge and faith.

Thank you, mom, for being you. I love you.

Christmas, 2011

Tuesday, October 30, 2012


My son is non-verbal. I've been trying for years to find the right communication system for him, but to date the best indicator of  what he wants to say is his body language. He reaches, pushes things away, claps when the answer is yes, and gives  looks to kill when he's annoyed. He also uses his eyes.

Nearly every morning when I go into his room and wake him, he smiles. His big brown eyes light up, and I know he's happy.

Communicating with someone who cannot speak is one way to fine tune your intuition. Since Daniel can't say or type what he feels or needs, it is a necessity to read his eyes and body language. Sometimes it goes beyond just picking up on non-verbal cues and going with gut instinct.

I find that when I can really slow down and observe patiently, I get it more often than not. Sharing thoughts and emotions in the absence of spoken language is an art. There are cues I use when I need to figure out what Daniel wants me to know.

He covers his face with his hands when he's embarrassed. He has a low grade cry when he's bored or unhappy. His heartbeat speeds up if he is in pain or hungry. There's a very specific growl he uses when he's angry that we're not picking up on what he wants us to know.

Sometimes I tune in on another level. Once when he was staying with his father overnight (years ago, before those visits ended) I woke up dreaming that he was being injected with a needle. Minutes later I got a call saying he was having a seizure, and his father gave him IM valium.

I've been able on occasion to sit with him when he's sick and just quietly "listen" for signals from my own body to let me know where he hurts or what the trouble is. I once felt throat pain very briefly, and it turned out after a trip to the peds office that he had a virus that included a sore throat. This is a technique I want to develop. If I can get a sense of where the problem is, I can be of more help to him.

I haven't given up on communication goals. We're hoping for a new school placement that's going to support us more in helping him with the iPad and other techniques. That should happen soon if the district cooperates. In the meantime, I'm listening.

Saturday, September 8, 2012

The Heart of it All

Last Thursday Daniel and I had dinner in one of the homes at our local L'Arche. It's a place where people with intellectual and physical disabilites live in community with the help of assistants. We shared vegetarian chili and cornbread with a group of about 12 in the Peace House. As a child of the sixties, everything about this scene appeals to me.

L'Arche is a revolutionary way of thinking and living. Jean Vanier started the movement in France when he opened his home to two men with disabilities in 1964. They were institutionalized at an early age, and when Vanier saw the conditions they were living in, he decided to do something. It's grown steadily over the years throughout Europe and North America. There are 17 L'Arche communites in the U.S. right now, with 3 more in the process of being up and running.

As a young man, Vanier did his doctoral thesis on Aristotle with a focus on happiness. His research boiled down to a very simple conclusion. The secret to happiness? Loving and being loved. That's the mindset that L'Arche grew from. From the International Charter:

"L'Arche exists to strengthen our local communities, welcome more people into our life and work, engage in advocacy on behalf of those often on the margins of society, and to raise awareness of the gifts of persons with intellectual disabilities."

"You may have a spiritual resonance with L'Arche's vision of mutuality and solidarity with persons who are marginalized, a desire to immerse youself in community, or a sense that there must be something more to life."

Peace House


One of the gardens

The backyard between houses

L'Arche is radical. It's radical in insisting that money, prestige, career, intelligence and all of the other things that we usually associate with success are not what make us happy. There's a different mindset in the L'Arche world. The prevailing philosophy doesn't glamourize disability, but accepts it as part of life, part of being human. Our IQ score isn't what counts. What brings us happiness is loving relationships.

It's been over a year since Daniel and I were there, and I was surprised that people remembered us. By name, no less! Sister Rita held his hand during songs and prayer at a service before dinner. She spoke to him, not about him. The same thing happened again and again. No pity, just welcoming and appreciation.

I came home from work very tired that Thursday, and I had to talk myself into going. I am not naturally social, and it took effort to go and not slip out before dinner. I kept up a steady internal pep talk that went, "Stop thinking about yourself. Relax into this. Just observe and be open." I'm glad that I did.

It's important for me to be close to people who view life this way. I need to cultivate friendships with those who believe that everyone has something to share and a purpose in being alive. I have a group of close female friends scattered across the country who choose to view their kid's disability as a part of life and not a tragedy. We started as a Yahoo group, and eventually moved to Facebook. We keep journals that circle the states so each of us can contribute. We've consciously decided to share a perspective that takes things in stride, including seizures and surgeries. We met online in the late nineties when our kids were babies. One of my closest friends in the group moved to my city in 2004.

We need people who nurture us on this path. I've written before in this blog about my deep desire to have a community where families can live in houses close to one another and share the life of raising children and caring for adult kids with disabilities. Since that's not possible right now, I need to approximate the emotional and physical support to the degree that I am able.

I love waking up to my son everyday. I don't ever want him to live elsewhere. I realize that I'm getting older, my back is getting weaker, and the natural order of things is for children to outlive their parents. If that day comes, I pray that the L'Arche model is more common. That it is the rule, not the exception.

For now I just need to do my part.

Saturday, September 1, 2012

Extreme Parenting: Messages in a Video

A friend I met when I started this blog just over a year ago recently sent out an invitation. She's a prolific writer over at a moon, worn as if it had been a shell.

She said:

"For the last two years I've said here and elsewhere that I'm going to make a video of still photos of YOU, parents of children with special healthcare needs and your wise words to yourself, THE DAY BEFORE YOU KNEW YOUR CHILD'S DIAGNOSIS. These words can be simple, complex, dark, light, positive, negative, funny, serious or everything all at once. I'm going to set the photos to music and hope it'll be helpful to new parents as well as inspiring. I imagine it'll be a healing testament for all of us."

These are our messages in a bottle. Very well done, Elizabeth! Thanks for giving me the opportunity to join in!

Saturday, August 18, 2012

And So It Goes

It's Saturday morning. I worked two days this week, getting the clinic ready for the new school year. Daniel's backpack is filled for Monday and the beginning of eighth grade. Melody has her driver's license and will be driving herself to and from school, appointments, lessons and all that jazz. Dang. We're all growing up!

I have a newly diagnosed student with diabetes this year. I met his mom and dad and like the rest of the parents in this little diabetes clinic I get the privilege of working in, they are great folks. I'm so thankful for this job. For the chance to be with elementary school kids everyday. For the added plus of being home when my kids are off from school. This September will mark thirty years as a nurse. I'm down on my knees grateful that I don't have to work weekends, holidays, or odd shifts anymore!

Our summer was free of drama. We drove to Illinois, myself and my kids, and spent time with the whole Kresse clan. It was very, very good.

I just feel like blowing some sunshine around today. The past year with all of it's woes is over. My husband finished radiation, chemo and all of that nerve crunching medical stuff. He's ok. We lost his dad almost a year ago, and had to find a secure place for his mom to live in safely now that he's gone. I needed more than my share of Immodium last year. There were too many tears, too much fear.

Yep, I'm marking the current good vibes by writing on this, my blog, so that when the tide turns again I will remember. I'll come here and read and go, "Yeah, this too shall pass." Uncle Ebb and Aunt Flow never sleep. I'll just enjoy today.

Monday, July 30, 2012

Shifting Gears

Summer break is winding down. In a couple of  days it will be August, the Sunday of summer.(Someone once said that if summer is a weekend, then June is Friday and July Saturday. Seems pretty accurate to me.)

I'm not ready to go back to the daily grind yet. We still have doctor's appointments to cross off the to-do list. This morning was Daniel's well check, and Thursday is one for me. Next week are a few more, including a four hour EEG. It's just the last of the "get it done before school starts" necessary stops. I also want to just savor the morning sleep-ins awhile longer.

We have to wait until September for the team meeting with Daniel's teachers and therapists to discuss the autism diagnosis and plan for the year's education goals. Communication. So many years into it, and still the necessary push to make it more meaningful for Daniel.

We're plugging away on the iPad, working on letters and spelling phonetically. I'm pretty sure the current placement at school is not going to understand my focus in this area. I don't care. I know my son, and I am certain that he needs more of a challenge.

He's walking well. I've been making him walk more out of necessity. My shoulder and back demand it. He's taller, heavier, and I'm older and more aware of my limitations. I've switched to a pair of AFOs that were made for him awhile ago that have more flexibility. Unfortunately, we just got the new pair that are the old ski boot model, and I don't think they're working well. It looks like I need to add another appointment to the list and have them redone.

He's also feeding himself more. His diet is mostly liquid, so in our world that means he's holding his cup and drinking without me holding it. He's also suddenly showing more of an interest in food. That's good, except when his hand mouthing habit and eating intersect. The guacamole he dug so much at the Mexican restaurant we stopped in on the drive home from Illinois was case in point. Slimy green hands are no fun in public!

Daniel begins  eighth grade in just a few short weeks. I'm going to try to enjoy this last bit of summer in between the obligatory doc visits and school supply shopping trips. Tonight we'll walk around the neighborhood when it cools down. I want to enjoy every last second before the alarm clock again rules our mornings.

Wednesday, July 18, 2012

Summertime in the Heartland

Grandpa and Daniel just a swingin'.

Sister is a future teacher. She's got the look!

Party at Uncle Mike's house!

Mom, Daniel and Melody

A few of the cousins at grandma and grandpa's house

Wednesday, June 27, 2012

Formal Diagnosis, and with it...decisions

We saw the developmental pediatrician at CARD (Center for Autism and Related Disorders) last week and he did a very thorough assessment of Dan. When he was five our geneticist wrote that he "fits the behaviors consistent with autism". We didn't really run with that, though. Now we have a formal autism diagnosis from a specialist in that area.

What now?

For years I've struggled with the school system over communication services for Daniel. In 2004 I attended workshops that the school SLP suggested to learn Every Move Counts, a program for kids with severe disabilities. I was on board. It's a long somewhat tedious story, but in the end, the school was not able to implement the program (the SLP who originally suggested it nixed it shortly after being the one to get me interested. Thanks.)  Every year I've had the same conversations, the same fruitless efforts to have his daily school life include hard hitting communication work.

So, now he has a diagnosis that's characterized as a language disorder. Me thinks they must step up to the plate.

Is a setting that's geared towards autism going to work for him? ABA is the gold standard. I've thought about the rewards that motivate Daniel. He doesn't like food. Praise? Sort of. Plus I've read a lot of books over the years by people with autism who are not happy with their early ABA training.

I tend to be attracted to the methods that aren't mainstream. Facilitated communication is one of them. I've been helping Daniel at home with a letter board and his ipad by supporting his arm so that he can point effectively. It's slow going, but it's working. I saw a documentary and read the book on Rapid Prompting, and I like the ideas the author presents. I don't do the paper tearing, but I present Daniel with two objects, tell him what they are, then ask him to point to the appropriate answer. Example: "This is an orange. This is a pencil. Now, show me the pencil." You get the idea. I just want to know how well he can answer correctly. I don't want to insult or bore him, though, and I've told him as much.

In August I'll meet with "The Team." Teachers, therapists, psychologist, etc. I have to be clear and sure about what I want for Daniel, and I'm not there yet. I'm using this time when both of us are off for the summer to get clear...or at least clearer.

Yesterday my daughter worked with him on identifying letters. He responds well to her because she's stricter with him than I am (she wants to be a teacher, and she's the granddaughter of a very good one. I think she has the touch.). The choice of teacher in the new year is going to be critical, but I don't know how much control I have over that.

So, I'm praying and musing and working with him to get an idea, a vision for what's possible. That's where we are right now.

Autism is a world. That's what the title of the movie says, anyway. Time to open up Daniel's world a little (or a lot) more.

Tuesday, June 19, 2012

Beautiful Connections

We are back from the conference. We spent three days and nights among the disability community. It's surprising how much your focus can change in such a short span of time.

Where do I start? In hopes of not sounding too Pollyanna with my resuscitated optimism, I'll begin with the bad. It was raining when we got there. Pouring. Lightning. Melody and I are doing a version of the Atkins diet (a slightly high fasting blood sugar of mine resulted in doctors orders for a low carb summer). We'd exhausted our supply of road food and needed a meal, so we ate an overpriced Hilton restaurant salad and tried to make the best of it. Not easy. We were still hungry at meals end.

When it looked like the four of us would be trapped in the hotel room indefinitely due to storms, she complained that she wanted to go home. I kinda lost it at that point. I slammed a drawer and told everyone that I was trying my best to make sure we all had a good time, but dammit, I'm here for the conference! Maybe I should have come alone! They all got cheerier after my outburst.

We sat in the hot tub outside while the cool rain sprinkled down on us (it was really nice, refreshing, until more lightning flashed and we had to run inside). We ate the nuts I packed, and watched a movie until we fell asleep.

The rain cleared. We swam and ate less expensive food outside by the pool. We calmed down and went with the flow a little bit more. We found our groove.

Saturday afternoon while I was waiting for a session to start (something about balancing the hemispheres of the brain) a woman struck up a conversation. I thought she was a presenter because she was alone and not dressed in shorts. Turns out, she's a disability attorney, former ESE teacher, and mother of 3 kids with disabilities.

Her words, observations, suggestions and support altered my thinking in important ways. She was shocked that in Florida he's denied speech services because of his low cognitive level.

"How do they KNOW what his cognitive level is?" She was pissed. Remember, she's an attorney AND a former special ed teacher.

I told her that after listening to the last workshop on autism, I'm thinking of transferring him to a private school that will give him better communication tools. She gave me a step by step plan for keeping him in public school but in a placement that works  for him. She said it's obvious to her after a short time of being with Daniel that he's "on the spectrum."

I knew that, but I've always been hesitant to move him from a classroom where they work so hard on physical skills and into one where there are kids who have behavior issues. Daniel can't jump up and defend himself. I'm rethinking that. I don't want him to one day be able to express what he's thinking/feeling and hear that he hated school. That he felt trapped. He's thirteen, and his remaining time in school is limited.

I met a man with autism who gave a presentation that day. I'd already talked to him in the expo hall and bought one of his books. The talk was comprised of stories. He called it "Autism Across America" and he shared some of his experiences with other autistic people that he's encountered around the country.

The next day when Daniel and I were sitting by the pool in the little cabana restaurant, he sat down with us. At one point, Dan was covering his ears.

"What's wrong? Is the music bothering you?" I asked.
"It's the wind," our friend offered.
Daniel looked up, smiled and clapped as if to say, "YES! He got it! Someone who speaks my language!"

"To an autistic person the sound of eyes blinking can be painful."
I laughed.
He said, "I wasn't trying to be funny. Although, I do have several jokes I can tell."
He went on to share a few of his "adapted jokes". Some former blonde jokes with just enough details changed so that they applied to autism. Funny guy, and very smart.

When I asked him if he knew of William Stillman, a man with Aspergers who writes and lectures, he said, "There are a lot of people who do what I do. I know some of them, but I don't know all of them."
I felt stupid.

Then I said, "One of the things I learned from Stillman is to alway presume intellect."
He thought for a split second and said, "I would disagree with that. I'd have to say that I presume nothing."
Touche. Again, this man was on his intellectual toes. (Although I still maintain that presuming intellect with a non-verbal person is much better than the opposite, which we encounter all of the time).

Daniel and I weren't the only ones making friends. My sixteen year old met a teenager whose brother has Down Syndrome. We saw them in the pool together the first morning there. That afternoon, they hung out and he even convinced her to go down the slide (she's always had a fear of them). From then on, they were friends.

Saturday night we danced. Daniel wanted to sit and dance, but I was able to keep him on his feet for a few good numbers. I don't know line dances, but we swayed to Electric Slide. The other teenagers talked to him; they genuinely enjoyed having him out on the dance floor. He loved it (he might not have loved mom as dance partner, but he seemed to dig the music and other teens).

Right up until our hotel check-out there were unexpected conversations, connections and a general feeling of community. Before loading the van, I sat and talked with a woman, her disabled son and his grandmother. That brief conversation helped us both. It reminded me of how important it is to be out there making friends, finding other people who are living this life. It was good. Very good.

Wednesday, June 13, 2012

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!

Monday, May 28, 2012

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!

Sunday, May 27, 2012

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!

Thursday, May 17, 2012

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.

Sunday, May 13, 2012

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.

Thursday, May 10, 2012

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.

Monday, May 7, 2012


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.

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.

Tuesday, April 17, 2012

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!

Saturday, April 7, 2012

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.


Friday, April 6, 2012

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'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.

Wednesday, April 4, 2012

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.

Monday, March 19, 2012

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.

Tuesday, March 6, 2012

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.

Wednesday, February 29, 2012

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...

Sunday, February 26, 2012

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.


Tuesday, February 21, 2012

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.

Wednesday, February 8, 2012

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.

Saturday, February 4, 2012

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!

Monday, January 30, 2012

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.

Saturday, January 28, 2012

What I pray for

Would I change him? I would and do provide him with the things that help him in this life, such as the medications that manage his seizures. I don't want him to suffer, but I have very limited control over that for anyone. I can only do what I can do.

I try new techniques to help him express himself and communicate. I advocate for services and connect with people who have something to teach and share that might help me be the parent he needs me to be.

I may be wrong, I have been often, but my philosophy is that he came into the earth with a mission. I was raised by parents who embraced the Edgar Cayce readings, and so my mind is of the persuasion that every soul is eternal and here with a purpose.

So, no, I'd have to say that changing Daniel is not something I fantasize about or wish for. My prayer for him is that he be surrounded by and experience happiness and love, contentment and joy. This morning we both seemed to be hitting the mark.

Sunday, January 22, 2012

When They Were Small

These photos were taken sometime in 2000 at Rockome Gardens in Illinois. My kids are two of the best things to happen to me in my half-century here.

Friday, January 20, 2012

Completely Normal

The microarray test, that is.

So, from here, no more testing until we can look at the entire genome. The capability is there, but scientists/doctors are not able to interpret it yet. That's several years down the road. And, as the counselor pointed out this morning, Daniel's issues may not be genetic.

"We may never know what caused Daniel's specific difficulties," the counselor said. I was expecting this result and some form of that statement.

Completely normal. I'm gonna go drink coffee and ponder that.

Thursday, January 19, 2012

Still Wondering

I called the genetics office today to see if Daniel's results from the microarray are in. I was put on hold four times (and man, is the elevator music loud on their system) and finally the secretary talked to me.

"I can see that the results are in, but the counselor isn't available to talk to you right now. She'll have to get back with you."

"Will that be tonight or tomorrow? Because if it showed something, I REALLY want to know as soon as possible." Hell, it's only been thirteen years.

"Ok, she's in clinic for the rest of the day, but I'll send her a message and let her know that you're anxious for the results."

Since it's after six, she must be waiting to contact me. At least I'm off tomorrow and can start calling them myself bright and early. I don't want to wait until Monday, and I know how to be a nudge.

Monday, January 16, 2012

What I wouldn't give...

This video is pretty amazing.

Daniel's on the couch with his iPad keyboard right now!


I'm enjoying Elizabeth's post this morning, and the song she shared is playing as I write.

My last post was about changing some things in myself. I used to be much more open. Somewhere along the way I started editing myself. I don't want to offend people, and I want to fit in and be liked. So alot of times I leave out parts of my story that I think might sound too weird, New Agey or out of the mainstream. I don't usually get into politics. I'm vocal at home, and with people who I know won't challenge me. That's pretty chicken shit.

I admire the outspoken. I was listening to the radio on the way to work the other morning and the DJ's were talking about some celebrities who identified publicly with a political party, and how they're doing themselves a disservice. "That's why you'll never know who we're voting for," the DJ ended with. It made me think. It's good to play it safe if you want to maintain popularity on the radio or in life. But it's the people who speak up that get our attention and really force us to figure out where we stand. And it's how true allies and friendships are formed.

I'll start with one thing. I believe that we are eternal, and that we have some choice regarding the life we enter and the people whose lives we'll be involved with.

Before Daniel was conceived I was working on a book proposal. ARE Press published my book 'Walking the Spiritual Walk' in 1994, and I wanted to follow it up with one about conscious conception and preparation for parenthood. One of the chapters I researched was the idea of conception mandalas. I read about them, and then made my own.

I read these books while I prepared the sample chapters and tried to live what I was writing.

The proposal was being considered by a publisher, and I had people on board to add their support on the back cover. Then Daniel was born and there was no time to write. I figured I'd come back to it later.

My first book was largely about my marriage to Daniel's dad, and when that didn't work out, I really lost faith. I questioned many of the things I thought I'd figured out. I felt very much like a failure. It shook my foundation, for sure.

I found out that life isn't as simple as I once imagined it to be. It's not neat. It's messy. It hurts. But if we aren't honest about our mistakes, our flaws and our Truths, we are stuck.

Here's to the Martin Luther King Jr.'s of the world, and all those who aren't afraid to speak their truth.

Monday, January 9, 2012

Blue Monday

I wasn't at work very long this morning when I got one of the calls I don't like. It was Rich on the phone telling me Daniel was in the middle of a big seizure. His care provider was also still there, and this is the first time she's seen him seize.

I told Rich where the Diastat was (they already knew, but in times like these it's good to have the emergency response mom on the phone giving directions). I was talking to him while Rita gave it, and listened while he described the shaking and unresponsiveness.

My principal was at my door needing someone to help with a parent whose kid has ringworm. I got off the phone and talked to her and let the parent know what to do. Then I called my most wonderful boss, a nurse who cared for her autistic sister for many years. She found a float nurse to replace me right away.

In between calling a parent whose kid just vomited, and giving a few routine meds, I touched base with Rich to make sure Daniel was alright. He was sleeping in Rita's arms.

Within an hour of Daniel's seizure, I was back home. He's crying a little off and on and resting. He doesn't have a fever or any other signs of illness, so I'm pretty sure he may have lost some Topamax at some point (he likes to spit it out, and I'm not always super-diligent about checking his mouth after he takes it).

He's lying beside me now and seems pretty calm. I'll give some extra Topamax today and hope that this is the last of the Big Shakes for a long time.

I'm lucky I have an understanding boss, a great care provider and a husband who knows what to do. Still, I'm gonna eat a crispy English muffin with lots of jelly and wallow a little. It is Monday, after all.

Saturday, January 7, 2012

Just a Quickie

I found an app yesterday for Daniel's new iPad, and this morning he's already used it appropriately! It's called Tap to Talk and it has albums with large, colorful pictures that you touch lightly (aka tap) and a voice says what the picture represents. This is big.

Daniel just touched "I need to go to the bathroom", so that's where he is now, and I'm off in a few to bring him back for more coffee talk.

This is great! Thanks again, Ken and Heather!

Monday, January 2, 2012


The blog that inspired me to jump on the blogging bandwagon (later than most) is written by Lesley. Here is her latest post.

I have similar feelings, fears and longings rolling about in my mind. I want a simple, happy, peaceful life. For Daniel. For myself and the people closest to us who love us and keep us going. Like Lesley, I don't dream about vacations or having a hot body with a wardrobe fit to kill. It's not that I'm "above" those things, whatever that means. It's just that I have this teenage boy in my life who shifts my perspective and helps me clarify what I really, really want as our experience.

Lesley says this, "I sense that this was all written on her pretty little soul the very first day she came into this world. And my challenge will be to handle it. To deal with it, to make sense of it and to support her in every possible way. Am I am fearful? Yes. It makes me anxious, yes. But mostly it makes me sad. And more determined than ever to make every day a good day for Sarah, as best as it can be. I live in the moment, because her future isn't looking too hot."

She writes that Sarah is losing some of her skills, and without a diagnosis, Lesley isn't sure what the future holds in terms of prognosis.

Because of Daniel I have so many people in my life who deal with uncertainty, with more unknowns than most parents. True, none of us knows what twists and turns our lives will take. Not many people plan on cancer or life altering accidents. But this ride is different. If you aren't on it, I can't really fully explain the experience. It's something you have to live.

I do know that having a community of friends who "get it" makes all the difference. I thank you all. I'm ready to do it again in this New Year, this circa 2012. Here's to it!

Sunday, January 1, 2012

The River of Stones

Thanks to Elizabeth, I'm joining in on this

Here's mine:

Sitting alone in a quiet room, I feel the darkness and let it cover me. Soft footsteps down the hall. Peace.