Thirteen!

Daniel unwrapped the new iPad today, and his big sister helped with selecting the first few apps to get him started. Cool coloring app, and one specifically for autism that involves cause and effect. These were taken at the end of a long, very fun day spent in St. Augustine. He was tired, but attentive.

He (and I) are very lucky to have her to help us with the technical stuff. Here's to big sisters, Mission: iPossible and Daniel's thirteenth birthday!

What keeps you going?

What is it that keeps you going as you care for your child full-time? Part of my inner pep talk comes from a book I read when Daniel was a baby, Changed by a Child, by Barbara Gill. When I'm really tiring out and starting to wonder how I can keep up, I think of her words.

She writes, "The physical acts we perform for our children easily become tiresome chores. Our son is seven and we still have to dress him; at fourteen we are helping with the shampoo, the bath, putting the special lotion on the very dry skin. He is well beyond age one and we are still feeding him and will be for years to come..."

"There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need...We know the intimacy of placing food in another person's mouth...We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong."

When I hear him calling me on a Saturday morning and I'd really rather lie in bed awhile longer, that passage often comes to mind. Surrender. When I give up my ideas of how things "should" be, or might have been, or how much better or easier someone else has it, I can get into the zone. He needs me. He needs me every single day in very basic, life sustaining ways. I don't want to glorify his disability. Yet I also want to shine light on how beautiful our relationship is. It's a balance I'm aiming for.

I could easily let my thoughts overwhelm me if I dwell too long on just how dependent Daniel is on me. I am responsible for all of his physical routines such as eating and bathing as well as moving and lifting him. I support him financially. My job pays the bills, and the little I get from other sources wouldn't even cover a months worth of diapers and food.

It's not good to be without a back-up, but that's where I am right now. I have a little bit of state help in the form of a personal caregiver who enables me to get out the door in the morning for work before his school bus comes. If he's sick, I'm the one who has to stay home and miss work. The buck stops here every single time. That's ok, and yet it's not. I know I have to build a network and have supports in place. That's a topic for another post, though, and one I've touched on before.

Today I'm just grateful that I read that book when he was so small. It really affected the way I frame the experience Daniel and I are living. Is it stretching things to say that it's a privilege to be so enmeshed in caring for him? I don't think so.

So, back to my original question. It's one I really want answers to. What is it that keeps you going?

Thank you, Mission: iPossible!

When I started this blog my first entry was about communication. We were beginning to try a new picture system in school last spring, and I posted some photos of Daniel attempting to use it.

The picture book turned out to be too complicated and cumbersome. Even I, with somewhat normal dexterity, had trouble finding the page and picture I was looking for. We bagged it.

Then we started private speech and language therapy. Daniel's therapist suggested an iPad. Hmmmm. The cost of one is pretty steep. I told Dan's dad to save any Christmas or birthday money he receives for him (Daniel will be thirteen on the 23rd) and that I would do the same. I figured we might be able to pool enough to buy him one for his birthday/Christmas present.

Then I stumbled upon a blog that was giving away iPads. It's over here: Mission: iPossible

I entered. There was a two week wait, after which a random generator picked two winners.

And...you guessed it! Daniel won! I'm very excited about the potential that the communication apps have for him. It's also really good to end the year on a positive note like this.

Thanks, Ken, Heather and Mission: iPossible! Stay tuned for stories and pictures of Mr. D and his new state of the art communication tool!

Road Trip

We loaded up the van and went to Gainseville yesterday. Destination: The University of Florida and one of the country’s experts on Angelman Syndrome.

The trip started in the pouring rain. As I lifted Daniel into his grandpa’s van, I caught a whiff of something. Then it was back into the wheelchair, and back inside for what would prove to be a fortunate bathroom break.

Thirty minutes into the trip, I realized I left his bag with his Pediasure, diapers, wipes, cups and bandanas sitting in the garage. Oops. Do we turn around? Do we wing it? We chose to keep going.

Daniel is a fussy eater. He prefers Pediasure from a straw, but eats lunch at school everyday. I’m always amazed that they check “ate 100% of meal”. But apparently he does. So, when we pulled into KFC I had strong words for my boy.

“You MUST eat now, because I didn’t bring any Pediasure, and your stomach will hurt if you don’t eat something. It’s just like a regular school day. You HAVE to eat. No water until you eat, either.” That last part didn’t thrill him at all, and he reached and reached for the water cup. Drinking is one of his favorite activities.

Mean mama prevailed (I guess I'm not quite as ineffective as I think). He ate his lunch, drank a little water, and we were off again.

Parking was fun. We went to the wrong garage and the wrong building. When we realized it, we had to move fast (in the rain) through three parking areas and into the right clinic. This involved my 76 year old father helping me lift the wheelchair with Daniel in it up four stairs (not four flights, mind you, just four stairs. Still.) We made it to the check-in desk five minutes ahead of time.

Dr. Williams came in wearing a mask since he’s battling a cold. I thanked him for not sharing his germs with us, and he proceeded to go through the list of tests that Daniel’s had done in his almost 13 years on earth (this was after we saw the nurse, followed by the nurse practitioner).

The doc left the room to confer with his NP, then came back with his pronouncements. “This is not Angelman Syndrome. He doesn’t have the Angelman gestalt. His main characteristics seem to be severe growth retardation and autistic behaviors. It's definitely genetic. Have you had the microarray analysis done? No? I’ll write a script for one and it may show some chromosomal deletions or duplications.” He talked some more genetics talk, and then we headed to the lab.

We found some milk for him to sip while we waited. The technician looked for a vein and tightened the tourniquet on his arm. Daniel suddenly grinned big. Is he enjoying this whole debacle more than me? Then he passed gas. Loudly. Forcefully. I guess that’s what he thought of the whole business.

Communal Living

I've been researching the idea of disability communes, aka intentional communities, since a couple of posts ago. I sort of like the idea at noahsarkflorida.org (links aren't working right now, sorry), but it's designed for families whose kids have mild to moderate developmental disabilities. I would love to see something for those of us whose kids are in the severe range.

I'm wondering who else out there would be interested in a living arrangement that includes entire families who have a severely disabled minor or adult child. I'm envisioning something like a large area of land, maybe several acres, with separate cottages and possibly a common area for meals.

Does this ring anyone's bell, or do I need to get my head outa the clouds?

Bombshell

Yesterday my mom took some pictures of Daniel sitting with me in the front yard. It's been awhile since the two of us have had a good one taken, so she snapped a stream of them. Not. One. Smile.

As you can see, it was pretty much a bust.

Later that evening, I took him to speech therapy. He has always had a penchant for pretty blondes. Even when he was a very small boy, he would blush and grin whenever he'd get close to certain people of the female persuasion. His SLP is a young, very attractive woman with long, blonde hair.

So, when she came into the room and talked sweetly to him, his face lit up. Suddenly, he couldn't stop smiling (forgive the mess his hair is, we had just come in from the rain).

In many ways, he's just a typical guy!

Life on Life's Terms

Thanksgiving week was eventful. My parents pulled into town last Sunday, and we laughed and sang the night away (dad's hooked on internet Karaoke, which I am becoming quite attached to myself).

The next day after work I came home to find that Rich's temperature climbed to almost 104. We rushed to the ER and five hours later came home with a diagnosis of early pneumonia and a prescription for heavy hitting antibiotics which we ended up paying a hefty price for since he's in the "donut hole" with his medicare coverage right now. Finally, six days later he's regaining strength.

Thanksgiving dinner was good. Not great, because my man wasn't able to partake of any food at all. His throat (original cancer site) is very sore and I'm worried. Just last week he was eating roast beef and mashed potatoes! Now we're back to square one nutrition wise. I'm hoping it's just a set-back related to the pneumonia and coughing.

Daniel and Melody are happy. Whenever grandma and grandpa are here life is as it should be. We all enjoy each other so much, and it makes the dark stuff seem a little lighter. My mom helped her pick out a gorgeous red dress for her upcoming piano recital, while I stayed home and rested. The weather is mild, and Daniel is spending lots of time going on walks and soaking up the sunshine.

I usually put the Christmas tree up the day after Thanksgiving, but I'm waiting this year. I'm too tired and just not up to speed with my usual holiday happiness level. I'll get there, I know (pray) I will. Just not yet.

Make me a commune

I love that show on TLC, Sister Wives. It's about a modern day traditional Mormon family where there's one husband and four wives. I guess they're not actually Mormons anymore, since their church doesn't recognize polygamy, but they're part of a church that considers itself Mormon....or something. I don't know or care about all of the theological disagreements. But I digress.

I love it because of the community. I feel so overwhelmed by my to-do lists sometimes that I think a few extra "sister wives" would rock. Although, a few brother husbands might be nice for the heavy lifting. The women on the show are pretty good at that sort of thing too, though, so either way I'd be good.

My daughter hates the show and thinks it's strange that I like the whole idea. Yesterday she told me that she's figured out why I am attracted to the concept. It's my fascination with the nun/community lifestyle. I've often talked about how I could easily see myself as a Sister (and I wasn't raised Catholic. I'm a free spirit when it comes to religion, so the authority thing would definitely be a problem for me. It's all about the connections with other women).

Some of my best friends who also have kids with disabilities have talked in the past about a commune type of living arrangement where we all help each other out. I could so go for that. I feel isolated so much of the time. I really long for some additional companionship and help. It doesn't bode well for me that I'm also an introvert who sucks at maintaining friendships that require me to venture out of the house. I'm in a catch-22.

Seriously, though, I am feeling extra introspective lately about the future. Myself and my kids have "big ones" coming up in the way of birthdays. I'll be 50 in a few months, Daniel 13 and Melody 16 in December. I am starting to find it hard to sustain the energy for everything that needs to be accomplished in a day. Full-time work, nursing Rich back to health, therapies for Daniel, piano for Melody, shopping, laundry, cleaning....

I don't have an answer right now. Just vague images and longing for a large house split into apartments like the original home the TLC family had (they had to leave Utah when their show put them in the limelight and the authorities started making threats. Now they're in Vegas living in separate houses).

Since there's a fat chance of that ever materializing, if you have other suggestions, I'm all ears. And I'm serious. Mostly.

My Solace

I firmly believe that nature brings solace in all troubles. ~ Anne Frank


I agree. Today was a beautiful, sunny, invigorating fall day. I spent it with Melody and Daniel at the zoo.

After months of chemo, radiation, CT scans and surgeries, Rich got good news last week. He still has to have a PET scan in December, but for now it looks like the treatment is doing it's job. The cancer in his throat is gone, and the lymph nodes in his neck that were affected are shrinking (and will continue to do so according to the oncologist). I am thankful.

So today I took some of that "take care of yourself" advice that I've ignored since July, and spent it with two of my favorite people on earth. My kids. Rich still isn't strong enough for a big outing like this, and truthfully, he'd rather watch football. So, as we have for so many years thus far, the three of us ventured out and had a really beautiful day together.

Time for me to hit the pillow now. I should sleep well tonight!

Friends

Over ten years ago I read a book that opened my eyes to something I hadn't thought about when considering Daniel's needs. I'll get to that in a moment, but first let me tell you a little about the book and it's author.

'Does She Know She's There', was written by the mother of a girl with a severe disability related to cerebral palsy. There are plenty of personal memoirs out there regarding kids with special needs (and I have a bookshelf full), but this one stands out.

Nicola Schaefer was ahead of her time. She gave birth to her daughter Catherine in 1961, about six months before I was born. In those days parents were strongly encouraged to institutionalize their kids with disabilities, and she got that speech along with the advice to go home and have another child right away. I loved her response to that doctor, a deadpanned, "What are my chances of having another dud?"

She kept Catherine at home and raised her alongside the two boys that came later. There were no services available to help her in day to day care back then. Nicola was inventive and optimistic and effected change by connecting with other parents and becoming a disability activist in 1970's Canada.

I wrote her a letter when I finished the book, and got a phone call in return. She's a funny, smart Brit and she inspires me to this day. Currently, her fifty year old daughter lives in a home that she's shared with friends for twenty-five years. There's always a full-time caregiver living with her, often a friend or relative. So much for institutions, this lady showed us all how it's done!

The sentiment in the book that continues to grab my attention the most is the need to create a network of friends for our kids. That's an issue I hadn't thought much (ok anything) about at the time. It resonated with me, even though Daniel was very young. If I don't work at the introductions, his typically developing peers aren't going to know him.

Recently I read another book by another mother, Sharon Dzialo, and it made me think of Nicola and Catherine. Sharon's son was injured in a near drowning accident the year that Daniel was born. Her book, 'Ceramic to Clay', details a lot about the efforts she and her husband Phil make in providing therapies to benefit Adam. She also wrote about her desire for Adam to have a friend (she expresses it beautifully through his voice in the chapter Adam's Ode).

I've been lax in the years since reading 'Does She Know She's There'. I took Daniel to an inclusive Sunday school class with kids his age, and I worked with other moms at his elementary school to be sure his class was included in activities in a similar way. Over time, though, I've gotten lazy.

Sharon's words brought to mind Nicola's and I feel the need to start acting on them. How do I go about it? When Daniel was about 4 years old I asked a neighbor if her son would like to come over to play with Daniel a couple of times a week. (I was trying to follow my mentor's advice.) I was rebuffed and I guess my skin is a little on the thin side, because I never really got over it. It kinda chapped my ass, as they say, but it's time to move on.

At thirteen, the boys in Daniel's peer group can't drive yet. I'm thinking of starting by seeking out guys a good ten years older than him so that he can attend things like football and baseball games. Sort of an older brother scenario. So yes, I'm considering the Big Brothers program. I'm a little hesitant to call them, because I don't know if they've ever served someone with a disability as severe as Daniel's before.

I just don't know a lot of twenty-somethings. Naturally I want to find someone with maturity and an open heart. All I know is that now is the time to begin. I think I'll ask a few of my friends to keep me on my toes by asking how it's going every so often. Accountability always helps when it comes to keeping me moving.

Here's to friends!

She said, she said; Time for he said

Daniel has PT, OT, and vision therapy at school. He was denied speech therapy years ago on the basis that his speech level is on par with his cognitive level. I fought it and took it downtown to the big shots, but he still only ended up with communication "services" rather than those offered by an SLP.

We had yet another evaluation by the speech therapist at his school last year that indicated he has the cognition of a rock. Her report said: "Unable to complete formal assessment. No communicative intent was observed. Point of origin may be to establish a reliable yes/no response, however,lack of awareness, intent, and motivation will make this very difficult."

Even though I knew that her report was dead wrong, and that her motivation was the consensus in Florida that any student classified as profoundly mentally handicapped is not eligible for speech/language services, it affected my motivation. I had been using YES NO cards with him, and instead of feeling inspired to prove her wrong, I lost enthusiasm. That was wrong on my part.

This week Daniel started speech and oral motor therapy in a private clinic. After only an hour with Daniel, this therapist had very concrete suggestions for decreasing the hands in the mouth habit he's acquired, and LOTS of great things to say about him.

She feels strongly that he's been underestimated. He responded to her requests appropriately, making the correct choices and identifying colors. He used head nodding for yes and no. She has high expectations for him, and says we're going to raise the bar to try and find out what's really inside of my boy.

I can't tell you how happy this makes me. Well, I can, but I don't know if you will get how excited I am by this validation. Depends on who you are. Parents of kids who are denied approriate services most likely fall into the "gets it" group.

The good news doesn't stop there, either. I got a letter from his new teacher telling me how well he's doing with the communication program she has going. In her words, "Daniel is a smart boy. Be as persistent as he is. Don't give up on him, he can do it. He may not always get the 'right' answer, but it's more important that he is actually going through the communication steps..."

Our private therapist says that Daniel has the mobility and the intelligence to do a lot more than he's doing. His new teacher agrees; now the work begins. I'm just thrilled to have people on our side for once regarding the speech/communication piece.

I think we may have turned a corner.

Don't define my reality for me! Don't even try...

I am fighting feelings of frustration (I'm pissed) stemming from an interaction I had with someone who assumes that my life with Daniel is one of struggle and unhappiness.

My blog title is Daniel's Gift. Maybe gift should be plural, because he has more than one. He is one of the happiest people I know, or at least his smiles and belly laughs would indicate so. The guy wakes up smiling, for god's sake. He's funny. He has a sense of humor and cracks us up at times. He's just an all around cool dude. This doesn't mean that his disability is a gift per se, it means that we all have gifts to offer, disabled or not.

So, to clear my mind, I'm going to quote someone I have immense admiration for.

"It is worthwhile making a distinction between talents and gifts. More important than our talents are our gifts. We have only a few talents, but we have many gifts. Our gifts are the many ways in which we express our humanity. They are part of who we are: Friendship, kindness, patience, joy, peace, forgiveness, gentleness, love, hope, trust, and many others. These are the true gifts we have to offer to each other.

Somehow I have known this for a long time, especially through my personal experience of the enormous healing power of these gifts. But since my coming to live in a community with mentally handicapped people, I have rediscovered this simple truth. Few, if any, of those people have talents they can boast of. Few are able to make contributions to our society that allow them to earn money, compete on the open market, or win awards. But how splendid are their gifts! Bill, who suffered intensely as a result of shattered family relationships, has a gift for friendship that I have seldom experienced. Even when I grow impatient or distracted by other people, he remains always faithful and continues to support me in all I do. Linda, who has a speech handicap, has a unique gift for welcoming people. Many who have stayed in our community remember Linda as the one who made them feel at home. Adam, who is unable to speak, walk, or eat without help and who needs constant support, has the great gift of bringing peace to those who care for him and live with him. The longer I live in L'Arche, the more I recognize the true gifts that in us, seemingly non-handicapped people, often remain buried beneath our talents. The so-visible brokenness of our handicapped people has, in some mysterious way, allowed them to offer their gifts freely and without inhibition.

More surely than ever before, I know now that we are called to give our very lives to one another and that, in so doing, we become a true community of love."
~Henri Nouwen, Life of the Beloved: Spiritual Living in a Secular World

So there (I say, sticking my tongue out)!

Genetics Visit

A few weeks ago we saw our geneticist, Dr. Perszyk. He spent a lot of time watching Daniel, sizing up his unique characteristics, and deciding what direction we should take in looking for a diagnosis.

Daniel hasn't had any testing done since 2002, and there are better methods out there nowadays. The glitch is that most companies that do the testing won't bill medicaid or many times even regular insurance. Doc assures me that we are VERY close to much cheaper, wide array testing and that we will have a definitive diagnosis one day.

In the meantime, he referred us to the Angelman Syndrome expert, Dr. Williams of the University of Florida, Gainesville. We'll see him on December 12. Based on the diagnostic criteria, Daniel qualifies for a clinical diagnosis even without the labs to back it up. He meets all of the features required, and most that aren't. Of course, the way chromosomes work, he could be affected by something extremely closely related to Angelman's that hasn't been discovered yet. Dr. Perszyk believes it's Angelman's, and that Dr. Williams will make the call.

Here's Mr. Happy himself, on an October day in 2007:



Here are some of the diagnostic criteria for Angelman's that Daniel meets:

Severe Developmental Delay
Ataxic Gait
Happy Demeanor
Hypermotoric
Easily excitable
Hand flapping
Microcephaly <2 SD
Seizures
Abnormal EEG
Hypotonia
Feeding problems
Drooling
Mouthing behaviors
Strabismus
Sensitivity to heat
Fascination with water
Abnormal food behaviors

It helps to have a diagnosis because then we have an idea of what to expect in the future. It's also good to know which chromosome was affected and whether it's due to an imprinting defect or the absence of a gene. It's the scientific part of me that wants/needs to know.

Ultimately, he's my angel with or without a diagnosis, typical or atypical, because I'm his mom and he's my boy!

Trying Times

Lately I feel like I'm on high alert mode all of the time. I had a talk with myself this morning just to remind me that I can't change the outcome of anything that's happening. I can do my best to cover all bases, but in the end I have no real control.

Daniel's teacher and nurse called me at work the other day to report that he had a staring seizure. I gave him extra Topamax and watched him, but everything seemed fine. Then the bus driver told his sister at drop off that he had a "small seizure" and she brought him out of it.

I'm doubtful that these are true seizures. Now, I know that the staring petit mal types can be very brief, but he seems to be responsive during these episodes. He tends to space out from time to time, but he always looks at me when I say his name. I don't want to overmedicate if it's not true seizure activity. Looks like it might be time for another EEG.

Rich has nine more radiation and two more chemotherapy treatments to go. He's not feeling especially optimistic about things, and that has me worried, too.

In the end, I can pray, I can take deep breaths, and make sure both guys get to their appointments and take their medications. I can be watchful and responsible for what I see and that's all.

As my father-in-law used to say, these are interesting times. Personally, I'm ready for a little boredom.

For Chet

It's hard to believe that a week has already gone by since we got the call from hospice telling us that my father-in-law died in his sleep. My emails from him are changing from the "on Thursday, on Friday..." to "last week" status. He always signed his emails "Cheers". The jokes he sent me that morning are still in my inbox. My last message to him remains unanswered.

He was 84 and he knew it was coming. He wanted to know exactly when the day would arrive, but of course those are the kinds of things we can never pinpoint. So, instead he planned the best he could by making sure every detail of his death would be covered: Cremation, burial, even his obit was written by him ahead of time.

Chet loved to write. When we met in 2003 and he learned that a small, independent press published my book in 1994, he told me it inspired him to finish his own and get it printed. He called it 'Seize the Carp' in it's first incarnation, and later changed the title to 'Chet Chat' when he revised it.

The cover describes it as:

Anthology of reminiscences, free verse, letters, whimsy, vignettes, opinions, observations and other stuff.

"A good bathroom book, for several reasons."....Clyde Womsley
"Fabulous coffee table book; big enough to cover stains and scratches."...B. Little
"Great Christmas gift; better than fruitcake."....Karen Stone

He was a WWII veteran, and a retired insurance salesman. He took up downhill skiing at the age of 50. His wife Betsy, married to him for 64 years, keeps telling me, "He had a great life. He did everything he wanted to do." And he did, as far as I know.

Even though we knew he had terminal cancer, we were taken by surprise when we got the call last Friday evening. He was stable for weeks. There was no sudden decline and bedside vigil. He laid down for a nap and didn't wake up.

The suddenness was hard for my husband. After a day of radiation and chemo, he was utterly exhausted when he learned that his dad died. He stayed awake the entire night grieving. Yet, I believe that by leaving us quickly, Chet was making sure that there was no need for hospitals or long, drawn-out goodbyes. Even in death he was courteous.

He didn't want a funeral or a memorial, just a small family gathering. Since he will be buried in the National Cemetery, we'll all be together then. Hopefully Rich will have all of this radiation and chemo business behind him and be feeling stronger by then. He has two weeks to go and then a scan to see if all of the super-sonic proton beams have done their job. I know that Chet is using any pull he now has on the other side to help Rich get through this last bit so that he can begin to recover.

We will all miss you, Chet. I'm not going to say goodbye, though. It's until I see you again. Till then, Cheers!

Happy New Year! School, that is...

We’re back in school. Daniel started 7th grade with a new teacher, one who comes with high recommendations from people in the know. Two of his best friends are in the same class, and the three boys have known one another since pre-school. I love that he has this continuity in his life.

Melody is a high school sophomore. This year she’s taking her first sign language course and is thinking about eventually majoring in special education. My step-daughter Cena is minoring in sign language in college, after studying it in high school as well. Looks like we'll have plenty of interpreters at our house! Me, I’m in year two as the diabetes clinic nurse at a local elementary school.

The final week before the new school year was crazy. Rich was hospitalized for three days for what was intended to be an outpatient procedure. He now sports a peg tube for feeding until the radiation to his throat is done, and he’s able to swallow food. What a ride this is! Getting everything sorted out with various doctors and case managers proved to be an ulcer-worthy experience. That part is behind us, though, and I’m thankful he’s home.

Daniel scared me by waking up sick on Saturday. It turned out to be an ear infection, and 24 hours of antibiotics returned him to normal. I don’t like to turn to the big guns automatically, but this time it was a no-brainer. Husband with stage 4 cancer, getting chemo and radiation = quick elimination of all potential infectors.

Last year when I inherited my new job, there was a prayer left taped to the wall by the nurse who preceded me. I read it every morning.

‘May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is here for each and every one of us.’ ~Saint Therese of Lisieux

Amen!

Turn the Page

We're headed to the geneticist's office this morning. We first met Dr. P when Daniel was just four weeks old. Every few years or so we revisit and see what's new in the world of genetics that might explain his unique challenges.

I am hoping that we can also get some feedback about growth hormone. Daniel's levels are very low, so we started supplementation last October. I stopped when his appetite got out of control and I wasn't seeing the increase in strength and stamina that the endocrinologist predicted. My knees were giving out, and I was wearing a brace everyday when I stopped the gh this summer. I don't want to withhold something that will be helpful to Daniel, and I respect Dr. P, so we're going to talk about it.

I plan to ask about alternative ways to have genetic testing done. I suspect a variant of Angelman's/Retts, and there are new tests available to explore that. The problem is that medicaid doesn't cover genetic testing for Daniel. It's partly his age, and also the state we live in. I'm hoping that we can get him tested through a research avenue.

I go back to work on Thursday for the new school year. Rich is getting a ride this morning from a guy we just met named Daniel. Call me superstitious, but his having the same name as my boy is good juju in my book! He's a friend of a friend and seems very dependable.

On the same note, a neighbor I've only waved to in passing offered to bring dinner on Thursday. Apparently Rich told her all about his diagnosis. I'm glad one of us is friendly in this house!

Random side note: Last night in the van Elton John's 'Daniel' was playing. I watched in the rearview mirror as my Daniel lit up. Huge, slightly embarrased smiles and lots of laughter and clapping. When we got home I wanted to recapture the moment on video, so I played the song again. Daniel put his head on the table and fussed at me. Guess he's not into performing on command. Can't say I blame him.

Off we go!

Unexpected Kindness

Yesterday was a rough day. A series of snafus landed at my feet all at once, and I was aggravated, angry and tired.

Then the mail came. A box! An Amazon.com box, one of my favorites! My guilty pleasure when I got my first real nursing job back in 1983 was to browse the bookstore catalogs as soon as my paycheck landed in the bank. I can survive on the same pair of shoes until the heels are hole-ridden, but my bookshelf goods never cease to multiply.

Yesterday's arrival was a surprise. I hadn't ordered anything in over a month. I ripped open the tape and tried to find out who the mystery sender was. It took me a few minutes, and all the while I was thinking, "whoever sent this KNOWS how to make me feel better." It was definitely from someone who understands my weaknesses and the way into my heart.

Finally, I found the gift note. It read, "I hope this book gives you both uplifting, as it has for me. Love, Aunt Barb." The title of the book: The Book of Awakening. Yep, my birthday buddy knows me well (Barb and I are both January 23rd babies, true Aquarians through and through.)

The entry in the book for August 10 reads, "...our lives are full of unexpected surges of kindness that seem to come from nowhere. Just when you're thirsty, a cup is gathered and passed around. Just when you are lonely to the point of snapping that bone way inside that you show no one, someone offers you a ride or steadies the grocery bag about to drop from your grip. Just when you feel nothing can raise your sad head from the lonely road, the deer stutter across the road in exact rhythm with Handel."

It landed in my mailbox at the right moment to help me through a rough patch. Thank you, Aunt Barb!

Deja Vu all over again

Daniel was a small baby. He finally reached the ten pound mark at one year of age, and that first year I put most of my energy into getting him there. I pumped milk, added powders to make it heftier calorie-wise, and supplemented with formula--the kind that was easily digestible (which, if you're familiar with special formulas, you'll know was not pleasing to the nostrils).

Turns out, Daniel was just programmed to be on the tiny side. At almost thirteen years of age he's only quadrupled that 12 month weight. He's 42 pounds and a few ounces. He still drinks most of his meals. He will eat well for the school staff, but not for mom. I don't sweat it. Every now and then I offer him food, and sometimes he takes it. Most of the time he smiles and raspberries it back at me.

The early days of trying to plump Daniel up came back to me as Rich started treatment for cancer two weeks ago. He had all of his teeth pulled, so he can't chew. Radiation is going to cause weight loss, and he'll need to consume about 2100 calories a day just to maintain his current weight. He may have to resort to a feeding tube before it's all over, but knowing my strong man, there's a good chance we'll avoid that step.

Back to my deja vu. I'm measuring and counting and coaxing Rich to drink the shakes and eat the chicken noodle soup I make for him. I'm using supplemental whey protein in the shakes to prevent muscle wasting. It's going well so far, but realistically, we're only into week one. We've got six more to go.

I'm starting to hum 'Circle of Life' in curiosity at how my life does just that. It circles. That isn't necessarily a bad thing. I know that we'll manage this, just like Daniel and I did twelve years ago when we were hitting the scales every other day at the peds office, in between therapies and other specialist visits.

I guess that's one of the silver linings of living with disability. You develop a tenaciousness that serves you pretty well when things go south. Then again, maybe I just haven't hit the wall yet. I'll let you know.

It's Staged

My husband Rich's throat cancer is a 4a, which means it is in lymph nodes on both sides. We went to the follow-up after his biopsy and scans, and the entire team of specialists seeing a clinic full of newly diagnosed patients gave us the news.

They were optimistic from the get-go. 90% cure rate with proton radiation and chemo. If that doesn't work, surgery on whatever nodes are still affected. We are home to one of only nine proton radiation centers in the country here in Jacksonville. We're lucky in that regard.

One important thing to know if you have to have radiation to an area close to your jaw, is that your teeth better be in perfect condition or they have to go. We already knew that Rich needed $14 grand worth of dental work, so in order to expedite things, they were all pulled. At once. They have to do that because if dental work is ever necessary at any time in the future post-radiation, hyperbaric oxygen has to be used, and it's very tricky for the area to heal. Just one of the inevitable after-effects of the cure.

It's gonna be a rough ride. There's no sugar coating that fact. I'm just grateful for our caregiver, Rita. She came into our lives at exactly the right time last September. We were finally added to the med-waiver a year ago (after a complicated process of qualifying under the crisis label). Before that, I was on my own for eleven years. Now that Rita's on the scene, I am comfortable with Daniel being cared for by someone else, and that is huge with all that's going on.

With family 900 miles away, Rich's dad dying of lung cancer and his mom unable to drive, we don't have a lot of blood-line support. Certain friends (you know who you are) have stepped up and called Rich offering rides and emotional support. When I go back to work in August we will need those extra hands. Rides are pretty much covered through the American Cancer Society, so the help we need will be more local and involve things like errands and such.

Starting next week it's twice a day radiation and once a week chemo for seven weeks. Less than a season, I keep telling him. We will get through it.

I did take an hour out with my daughter to float in the ocean a couple of days ago. We dodged waves, soaked up the sun, and felt the ocean breeze cool us in this insane heat we're having. That one hour renewed me. We also ate sushi next door to the pharmacy while waiting for Rich's meds to be filled. People keep reminding me to take care of myself, and I think I did a pretty good job that day.

Rich is an amazing singer and guitarist. He has a beautiful voice, and has sang and played in bands since he was 14. I really want to give him something extra to help him through this, so I've been trying to contact his favorite singer, Tommy Shaw. He has a sound similar to Tommy's, who sang for Styx for awhile. I'd love it if we could get an autographed photo with a note or something. Just putting that out there, Universe!

The stage is set, now we just have to play this thing out to the end. I remind Rich everyday that by Christmas we'll be standing in front of the tree getting a picture snapped with his new pearly whites in place, and all of this behind us. That's the plan!