Thoughts on grieving

It's the little things you miss the most.

My mom always made sure Daniel had a blanket over his legs if it were cold out during a walk. At night, tucked into bed, she would check him multiple times to be sure he was covered, head comfortably placed on his pillow.

When we went out for dinner together, it was my mom who never forgot to bring extra of everything for him. Bandanas, toys, cups, water, clothing or a jacket. When it was time to line up at the buffet for food, she stayed behind with him allowing the rest of us to fill our plates first.

During visits to my parent's home in Illinois, when the rest of the family would gather for a barbeque or celebration, she was the first to volunteer to hold him or walk with him when he would fuss. She did this for thirteen and a half years.

We lived together from 2000 to 2002 when he was between the ages of one and three. After dinner, she refused my help with the dishes saying, "you just take care of Daniel." I worked a part-time job during those years, and she was my constant back-up with both of my kids.

Every new school year she shopped with me during my summer visit and bought clothes for the kids. Throughout the year, she sent boxes of clothes and toys for Daniel. She knew what he liked the most, and was always on the look-out for a squishy toy or a little car.

When I think about it, those little things are really the big things.

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 Care.com 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.

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



Intuition

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.

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

Daniel

Welcome

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.



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!

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.

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.

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

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.

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.

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!