Friday, December 30, 2011

Is it 2012 yet?

I just finished a long walk with Daniel around the neighborhood. I tried to breathe a little more deeply and let some of the chaos of the past couple of weeks go. It's been good, not so good, and at times a bit ugly.

First of all, thank God my parents have been here since Thanksgiving. I don't know how we'd have survived without them. We'd definitely be less well fed and the house would not be as organized. I love those two with my whole heart and every cell of my being! Not that I'm dramatic or anything!

Both of my kids had birthdays in the past week. Those were good days. Celebratory. Fun. I now have both a 16 and 13 year old living under my roof, and I'm about to hit 50. Let the good times roll!

On Christmas day we went over to pick up Rich's mom who lives alone since her husband of 64 years died this past August. She didn't answer the door, and the newspaper from the day before was still outside. Not good.

I yelled through the mail slot and heard her weakly say, "I'm coming," just as we got the stubborn key to turn in the lock. She was on the floor in her pajamas, and had been there for awhile.

Long story short, she was hurt, but not badly. We ended up calling rescue and having her admitted to the hospital where we found out she has a few issues that need immediate attention. Her rotator cuff is torn, and she's a little more confused than usual.

After a few days as an inpatient, she was transferred to a skilled nursing facility for physical rehab and nursing care. The main point that I must relate about all of this is that she is one tough, kind, positive lady. She's thankful, polite to all, and she does not complain. I could learn a lot from her. When I think of how well she's handled all of this, it really tears me up. I love that woman.

So, you can perhaps imagine that life has kicked it up a few notches lately. Daniel is great, he got over a cold in two days time and only a few nebulizer treatments. Melody took a little longer to get over hers, and I stayed healthy through it all. My mom and dad are strong like bulls, even though they have a lot of pain to deal with at almost 77 years of age.

We have a few more nights together, then we'll all be back to our old routines. For now, I'm focusing on ringing in 2012 with as much chutzpah as I can muster.

Here's to all of you out there struggling, yet having fun and making this crazy life work one way or another! If I don't post again until then, Happy New Year!

Tuesday, December 27, 2011

Sixteen!


My daughter turned 16 today. If I could choose to help her learn just one thing, the above would be a pretty good choice. Truth be told, she teaches me more than I'll ever teach her. She has been one of Daniel's constant companions and best friends. Love, love, love that girl. We took a day trip with my mom to Cassadaga, Florida.


My mom and my daughter.





I am quite possibly at my nerdiest in this picture. It's one of few taken with my daughter today, so I'll bury my ego and include it here!

Friday, December 23, 2011

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!

Sunday, December 18, 2011

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?

Friday, December 16, 2011

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!

Tuesday, December 13, 2011

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.

Tuesday, December 6, 2011

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?

Tuesday, November 29, 2011

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!

Sunday, November 27, 2011

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.

Saturday, October 29, 2011

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.

Sunday, October 23, 2011

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!

Wednesday, October 5, 2011

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!

Friday, September 30, 2011

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.

Thursday, September 22, 2011

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)!

Thursday, September 15, 2011

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!

Thursday, September 8, 2011

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.

Saturday, September 3, 2011

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!



Wednesday, August 24, 2011

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!

Monday, August 15, 2011

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!

Wednesday, August 10, 2011

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!

Saturday, July 30, 2011

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.

Saturday, July 23, 2011

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!

Saturday, July 9, 2011

It can all change on a dime

Daniel and I made it through the first week of summer school. Both of us were jittery, and it took time to adjust to getting up so early again. I was my usual neurotic bundle of nerves the first two days while I learned a whole new routine with different students, lots of tube feedings, meds, and all new people. Everyone who has worked there before told me he and I would both love it, but of course I had my doubts. They were right (my friends, that is, not my inner doubts).

Just as the week wound down to a close, though, everything changed. Our world was rocked big-time. My sweet man who I just celebrated one year of marriage to was diagnosed with throat cancer. We don't know the full extent yet; the results will be in on Monday. To say I'm shocked, numb, scared, freaked...those words just, well, they don't seem to pack the right punch for what's going on in me right now.

Everyone who knows me knows that I've always been open to alternatives but I don't balk at traditional treatments. So, the best thing I can find for my hands to do right now (besides ordering the smokeless cigarettes for him that are on their way now), is research and use the tools I have to help boost his immune system. I also ask that everyone remember him in their prayers, drum circles, meditations, whatever positive energy path you employ!

This is one hurdle we've not had to jump before. We're gonna need more than a few friends to help boost us over.

Sunday, July 3, 2011

Freedom

If
by Rudyard Kipling

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";

If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man

Friday, July 1, 2011

Sweet Summer Days

It has been such a peaceful week. Melody is on her pilgrimage with the youth group to PA and NY, and it's my last week off before going back to work for the summer school session. We haven't done much in the way of exciting stuff, but everyday has been good.

It might be due to the Zantac, or the alignment of the moon and stars, but Daniel has been calm and happy all week long. We've had a lot of doctor's appointments and errands to check off the list. He's smiled through all of them.

Tonight Rich and I had crab legs at a favorite restaurant on the beach while Daniel hung out with his caregiver for a few hours. He loves that woman. He hadn't seen her all week because we were out of respite for the fiscal year, and when she got here his face lit up.

Good news came our way today, too. We've been approved (after two denials) for personal care attendant hours for Daniel. It took some fighting, mostly on our caregiver's part, but we beat the system for once. Someone at Medicaid told her that she and I should be poster people for getting an approval with the new agency in charge, because so far all they've seen are denials for PC.

Life is good.

Sunday, June 26, 2011

Lava Lamps and Tie Dye

Daniel's caregiver is in the process of making his room more of a sensory den for him. She bought a black light, lava lamps, and glow-in-the-dark stars. As mentioned in the last post, I am trying to find new music for him to divert the hands from his mouth, and one thing that works is drumming. Santana was a hit, but since I don't have any of it on CD yet, he's been jamming to Michael Jackson all weekend.

To complete what's turning into a seventies theme, we tie dyed shirts yesterday. Daniel's turned out the best in green, yellow and blue. He is LOVING his cool digs, but as you can see from the picture below, he's not ready to give up the hand habit just yet.


He's been very calm and happy the past few days, and I believe the glowing sensory additions in his room have helped. Since I've not been feeling well, it helps when he's able to play and be entertained by his surroundings. I feel anxious when I'm sick and I don't have the energy to take him for walks or get his AFO's on for some exercise. He's been ok with it all.

Tomorrow we start the countdown to summer school for both of us. I can't say I'm looking forward to getting us both up, ready, and downtown by 8 a.m. The past few weeks have been heaven. Sleeping in, no schedule...we have both loved it. I may have to spend some time gazing at stars in his room, giving myself pep talks before July 5th. For now, let the drums keep rolling!

Thursday, June 23, 2011

Drum Contest--We Have a Winner!

Daniel loves to drum. He also loves to put his hands in his mouth. When he's doing the former, we get a lot less of the latter. So, I've been trying to figure out what his favorite tunes are. He likes a lot of different music, (he does come from a family of musicians and singers, after all). I spent part of yesterday playing a variety of stuff to see what gets the best reaction.

So, what were the final results?? Drum roll, please......





Santana wins by a landslide! Especially this familiar tune--


Rock on, Daniel, rock on!

Saturday, June 18, 2011

Blessings

The other day my cousin Sue shared a song with me via Facebook. It's called Blessings, by Laura Story.

One of the lyrics is, "this is not our home." That brought back a poignant memory from when Daniel was just over a month old.

We had no diagnosis at that time, other than microcephaly. We'd been to the geneticist, all tests were normal. They told us to "wait and see". He could develop normally. Some people just have small heads.

On a beautiful, sunny day in February our pediatrician called after a visit with the geneticist. She said that the two had talked and decided we needed to be admitted for Failure to Thrive.

Wait. He's gained weight! That's not what Dr. P says. No! He has! I have it written in my log. I'm on the phone outside while Melody plays on the porch. My mom and dad are still in Florida following his birth, helping us out everyday. I don't want to leave. I DO NOT want a hospital admission. My son is FINE.

The decision was made. They admitted us to the Children's Hospital to monitor my milk supply (it was fabulous, I felt I could get side work as a wet nurse), keep close tabs on his weight, and maybe do a few more tests to see what was up with this tiny boy with the small head and big ears.



I was so sad. I just kept repeating to myself "this is not our real home." (Meaning earth.) I was terrified.

During our stay I kept my log of his weights, weighing him before and after every feeding. He DID gain, although not alot. Still, the pediatrician didn't want to let us go home after 3 days because the nurse's notes didn't reflect what my notes did.

I showed her my record again, and we weighed him once more. We went home late that evening. I think I let go a little, too. I knew then that Daniel would not be a typical boy. I knew in my heart that we were going to face hard things.

In the song she asks, "What if the trials of this life, are your mercies in disguise?"

I do know that what looked unbearable to me at that time turned out to be just fine. Are there struggles? Yes. But the happiness definitely outweighs them. He enjoys life, we enjoy him. That's all I know for sure.

Monday, June 13, 2011

Summer Time!

Our last day of school was Friday, so today is the official start of summer for us. It was so nice to get up the lazy way today! Daniel and I were the first ones up at about 7:45. He played, I drank coffee, talked to my mom on the phone, then we went for a walk.

Saturday we attended a L'Arche carnival fundraiser at Christ the King Church. I've made a commitment to myself to become involved with the L'Arche community this year, and I started there. I met the director, a few of the core members, and some assistants. I plan to attend First Thursday mass followed by dinner in a different home as often as I can starting in September. We did this once before, and in checking old emails, I discovered it's been six years!

Reading 'The Boy in the Moon' inspired me to get involved with L'Arche in a deeper way. I don't know if Daniel will ever live apart from me, but if he does, I'd like it to be in one of these communities where life together is about friendship, not the typical caregiver-patient arrangement.

We went swimming again Saturday evening. He's really getting used to the new suit with the flotation, and had a great time splashing. He enjoyed that more than the heat of the carnival.

He and I have three weeks off followed by summer school together. I'll be working and he'll be attending a different school (different from both his and my usual schools) for three and a half weeks. It's a center school, meaning all of the students have disabilities. I spent a day of orientation there last month, and I was impressed with the atmosphere. It will be good to be exposed to different therapists and teachers. I'm hoping we'll both learn some new tricks to make life more interesting!

It's good to have a break from the usual grind. Yay summer!

Sunday, June 5, 2011

Pool Time

Daniel loves water. He has ever since he was a fussy baby. When he cried, all I had to to was sink into a warm tub of water with him and he'd settle right down. Bathtime is still a favorite for him, and he soaks the floor with his splashing (thank god for tile!). Today we stretched, kicked, floated and splashed our way through a Sunday afternoon. It was bliss.




Saturday, June 4, 2011

A Typical Saturday Morning


Daniel loves cars, trucks, anything with wheels. Here he is with one of his Easter basket gifts. He examines them, bangs them on the table, throws them, and starts all over again. When he's tired, he lays his head beside them. Note the overturned ambulance above his resting head.


I love lazy Saturday mornings with my boy when we're the only ones awake in the house. All is well in our world.





Saturday, May 21, 2011

The Boy in the Moon


I wrote my last post, Gifts and Gratitude, after listening to part of an NPR author interview with Ian Brown. Brown discusses life with his disabled son, Walker, and his book, 'The Boy In the Moon'.

The interview stirred up a lot of feelings within the disability community because of a comment he made about "disability masochists", which he defined as people who make their disabled child the most important, indeed the only important thing in their lives. He also said that he hesitated to write his book since he'd been turned off by some of the "misery memoirs" he'd read over the years.

After listening to part of the interview, I read some of the blogging going on about his comments. I found some wonderful, intelligent, very outspoken people out there who are raising severely disabled children. They weren't letting Brown get off easily for those unfortunate labels! I'm glad they were able to succinctly say what I was thinking.

I also turned to my Nouwen library to try and clarify my own thoughts about the worth of a life lived with severe limitations. I blogged a little about L'Arche, and what that philosophy means. It was a tiny touch of what it means, by the way. I'm so busy with day to day things that I don't have the luxury of writing as much as I'd like to.

Finally, I ordered my own copy of Brown's book so that I could put it all in context. Wow. What a cool find!

There is an entire section on his experience with L'Arche, including time spent with the founder of the movement, Jean Vanier. I don't know if he spoke of this in the NPR interview, because I never found time to listen to the entire thing. I had no idea that Brown was influenced by this community of people who live together, disabled and non-disabled. It was fascinating for me to read, although I must admit that I only got the book in the mail yesterday, and sped through it as fast as I could last night, due to very tired eyes and body. (Geez, I'm sounding pretty attention-challenged. I didn't listen to the entire NPR interview, and I skimmed the book. I plan to remedy both during my summer break. Being a school nurse has it's advantages!)

When I first read the term "disability masochist",  my honest fear was that I might fit his definition. It's not a nice label, no one wants the word "masochist" applied to them (no one I know, anyway). It didn't take me long to realize that there is nothing masochistic about my love for Daniel and the enjoyment I get from living with him and caring for him. If someone doesn't find this life fulfilling, then perhaps it could be seen as self-torture to continue on out of duty alone. Not in this home, though. 

In the end, I think it's an unfortunate term. His book is good. It's very thought provoking and well written. Brown is a writer by profession, and he tells a fine story.

Disability masochism is not really the important conversation to keep going. And for the record, I have never met anyone who fits the description. The parents I've encountered balance their lives the best they can. Having a child with extraordinary needs does make a huge difference in how you are able to organize your time, but it doesn't always have to be as limiting as might be imagined. I'm only speaking from my biased personal experience.

There are more compelling discussions that his book can and should bring about.



I love Brown's words on page 270.
     "These days I have a fantasy of my own. In my fantasy, Walker and people like him live in a  L'Arche-like community, with the help of assistants. It's a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn't just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful--not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives--slowly, and without much of an agenda beyond merely being himself."

Now, on to read Brown's book more slowly on this Saturday morning, and indulge a few of my own fantasies for the future. After all, nothing happens unless you first dream it.

Saturday, May 14, 2011

Gifts and Gratitude

     I read Henri Nouwen's book, 'Adam: God's Beloved', when Daniel was about three years old. I'm the type of person who tries to make sense of things. I tend to live in my head, sometimes driving myself crazy with questions that don't have answers. The story of Adam is well-told by Nouwen, and it helped me make peace with disability.
     Nouwen was a priest and academic for most of his life. He wrote books, did theological research, and in general lived a life that placed intelligence in pretty high esteem. In 1986 he left university life to go and live with the mentally disabled in a L'Arche community in Canada called Daybreak. He would be their pastor for the next ten years.
     Part of his first assignment was to work with Adam, one of the most disabled in the community. He was taught to help him with the very basic tasks of bathing, dressing and eating. It scared him. He didn't think he had what it took to help someone with such severe limitations. He was afraid he might not do the job right, or that he would somehow hurt Adam. That was not the case. In fact, he later wrote that the friendship that developed with this very disabled, non-verbal man was one of the most transformative of his life.
      In Nouwen's book he wrote, "Speaking about 'Adam's Gift' is not romanticizing an otherwise quite demanding and unrewarding life situation. Adam's gift was a reality of everyday living...Amid all the planning of meals, cleanups, visits to the doctor, shopping, repairs, and countless other things to do, that question of the gifts of Adam, Roy, Michael, Rosie and John (other disabled core members) always remained central. Everyone knew that they would not remain good L'Arche assistants for long if they weren't richly rewarded--by the spiritual gifts of people like Rosie and John. They were discovering that true care is mutual care. If their only reward had been the small salary, their care would soon have become little more than human maintenance."
      Once, a pastor friend who taught theology visited him at L'Arche Daybreak. He felt that Nouwen was wasting his time and talent working with Adam.
     His friend asked, "Why spend so much time and money on people with severe disabilities while so many capable people can hardly survive? Why should such people be allowed to take time and energy which should be given to solving the real problems humanity is facing?" (A question that some still have, and one that reminds me of Judas objections when Mary used expensive oil to wash Jesus' feet.)
     Nouwen didn't feel the need to debate with his friend. He did later write in response to that conversation that the real questions of God are "Can you let Adam lead you into prayer? Can you believe that I am in deep communion with Adam and that his life is a prayer? Can you let Adam  be a living prayer at your table? Can you see my face in the face of Adam?"
     At the end of the book, Nouwen writes, "From a worldly perspective telling about our relationship makes no sense at all. But I, Henri, Adam's friend, decided to write it down. I didn't embellish it. I didn't soften or sweeten it. I tried to write it as simply and directly as I could. I am a witness of Adam's truth."
     It's a truth that many parents of  profoundly disabled children know, but find difficult to put into words without sounding sentimental. We're not superhuman. Our kids aren't angels. They're human beings made in the image of God, and we can recognize their gifts and offer ours in return if we choose to.
    
    

Monday, April 18, 2011

Recovery Time

Over the years, the main physical trouble that Daniel has dealt with is coughing and congestion that linger on. When I hear the first sniffles, I know that we'll soon be getting the nebulizer out to tackle his cough. He's never been hospitalized because of it, and it's never progressed to pneumonia. The trajectory it follows is familiar territory.

Friday night the sneezing from the night before turned into a croupy cough. We used our typical arsenal of Zycam, nasal saline spray, Vicks rub, Guaifenesin and a little castor oil tummy rub thrown in for good measure (thank you, Edgar Cayce). Unfortunately, this time he experienced fevers and cough induced vomiting of a worrisome color. A trip to the ER later, we have confirmation that there's blood coming from somewhere in his GI tract. Now we've added Zantac and an antibiotic to the mix, and are set up for a consultation with the specialists.

Through it all, he's a trooper. When he's sick like this, I spend a lot of time holding him and taking him for walks. The beach stroller soothes him, and it's especially nice outside right now. This morning during our walk he started laughing really big belly laughs over something. I'm not sure what tickled him, but it was good to see him so happy.



For awhile before this, I had spent some time in my mind worrying about stuff that needs to be done around the house. So many times my hands are tied when Daniel is having one of these episodes. I can look around and see that I need to dust and mop, but I can't get to it. It can frustrate me if I let it. The to-do list grew in my head this morning until he started to laugh. I remembered how insignificant my list really is. I will either get to it, or I won't. If I don't, it's really not a big deal.

Days like these help me keep my perspective. When I decide to look around at the spring flowers, smell the honeysuckle in the air, and watch Daniel happily playing with the strap on the side of the stroller, I experience peace. Just being able to take a day off from work to help him get back to normal again is a gift. Why does my mind want to spoil it by making up a list of "shoulds" that need to be done? Well, it didn't win today.

I did manage to get a few Easter decorations out of the garage and do a little dusting. But that's as far as I'm going with my "to-do's" today! 

Saturday, April 9, 2011

Bring on the buffet!

Yesterday I got a call from Daniel's school nurse. He started middle school this year, so everyone is still getting to know him. She asked if it were ok for him to have "table food". Sounds like a strange question to ask about a twelve year old, but Daniel has had an aversion to solid food for years. He mostly likes to drink his meals! I send in things like sweet potatoes, oatmeal, stuff that the occupational therapist helps him eat. Some days are better than others, but he's always done much better for the school staff than me.

I said, sure, absolutely! If he's willing to try it, he can have it. She was pretty excited to tell me that he polished off an entire school lunch (he must've been REALLY hungry, lol). I started envisioning a weekend of real food for my guy-- baked potatoes and steak! Hell, whatever he wants! It's only Saturday morning, so we have yet to see how far he'll take this, or if it was just a fluke.

This little variation in Daniel's behavior made me philosophical. We don't see a lot of changes year to year. Growth is slow. It's always been so. We're old hats at this twelve years down the line. I don't burn out (I have days of frustration, but that's not the same to me as full-fledged burn-out), and I don't think he's often discouraged either. Why is that?

Something that helped me early on is a little book called 'Changed By a Child' by Barbara Gill. Here's a passage that is always with me, imprinted on my heart.
      
     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 turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person's mouth; of sitting by a child's side in the dark, singing, so that he can sleep. 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. Our tasks are our opportunities. (Changed by a Child p.71)



Enjoying a sip of water from a straw.



Ignoring oatmeal in preference to his hand.


Then it's on to ya-ya-ing hand to mouth, and playing with some favorite toys.

I'm sure that from the outside looking in, it's hard to imagine how we deal with the day to day sameness that slow development means. Gill probably helped me out there, too.

     Living with our children every day, seeing them "conduct themselves naturally in their own spontaneous way," we see how they are people according to the capacities they have. We see their souls. Let us hold, always, this picture of our child in her completeness, even-especially-in the face of those who see her as decomposed, a collection of deficits. (Changed by a Child, p. 33)

Yeah, it might seem strange to celebrate a twelve year old boy deciding it's time to move from liquids to solids. For us, it's just a natural part of this ride we're on. 

Sunday, April 3, 2011

Back to School

Today was our last day of spring break. We had ten days off and managed to divide it pretty evenly between time alone and time together. Melody and I shopped and had lunch on the first day of break. The following week Daniel took a trip downtown with me to pick out a new walker.

All of us attended a local acoustic night and heard some good music. Daniel yelled out his appreciation during one woman's rendition of 'Black Velvet.' He has good musical taste! We met a teenager there with similar issues as Daniel. We introduced ourselves as soon as we spotted her wheelchair stroller, and spent a lot of time talking. 

We managed to add some getaways to the mix, too. Melody flew to Virginia Beach to spend time with her cousins and their new baby girl and two boys, and Rich and I drove to Cedar Key for two nights. Daniel had his own private caregiver here to take him places without me, including the park and the mall. That's very unusual for him. The report was that he had a good time until the second morning when his mood started to turn a little fussy. When we pulled up in the drive he was outside in his beach stroller. I rolled down the window, called out to him, and he smiled. He was definitely happy I was home, and gave me the kisses to prove it.

The balance of it all was really nice. We ended it today with church, followed by some long walks and time in the shade. Tomorrow the kids will be back in school and I'll be back at my job as a school nurse, dreaming of lazy mornings and beautiful sunsets on the Gulf of Mexico.



Now I'm counting down the days until Easter!

Friday, March 25, 2011

Walking Tall

Wednesday we met with a new doctor for Daniel, a pediatric physiatrist at UNF, and got her input on his  AFO's (leg braces). On hand was his hippotherapy PT, aka the Queen of AFO's. I'm so glad we did this, because they were able to spend a lot of time with him, watching him walk, debating on the best brace for him, and also checking for any tightness in his muscles (he has very little, and treating it would most likely make him crumple over).

The verdict is that he needs a more flexible AFO. The Queen says his current ones are like ski boots. They don't allow him the movement he needs when he's walking. Both she and the doc also want to see him using his walker more, but we need an updated model since the one we have is seven years old and way too small for him. We haven't bothered with a new one because our PT at school transitioned him to hand-held walking several years ago. The problem is, he has way too much of a drunken swagger at times.

Since he was casted and measured just a couple of weeks ago by the orthotist who visits the school, I had to race to see if I could change the prescription before the new AFO's were made. In a rare stroke of perfect timing, I arrived at 4 p.m. while they were still open and available to recast him and make the changes to the script. We scored!


This is a parade of the AFO's he's had over the years. Our new PT, the Queen, feels that he might even be able to walk with a pair that end at the ankle. We're going to try some off-the-shelf shorter ones that we can buy reasonably cheap. Go Dan!

This is a video taken last June when he graduated from fifth grade. He's doing pretty well with the hand-held walking, here. He often tends to pull down on our arm when he walks like this, though. I think he knows better than to try that with his aide!



Another cool thing about this visit was that the physiatrist mentioned how much he resembles someone with Rett Syndrome. That's always been the closest diagnosis I could come up with to match Daniel's list of characteristics. Years ago he tested negative for it, which isn't surprising since it mostly affects girls, and boys with the deletion generally don't live long. I'm wondering if the missing piece of his genetic puzzle lies somewhere close to the MCEP gene, just not exactly the same as the one that causes Retts. We see our geneticist next summer, so maybe we'll get some insights there.

All in all, a good visit, good connections with new people, and hopes for improved mobility for my boy!





Monday, March 21, 2011

Another First

Until very recently we haven't had any outside help with Daniel's care. My parents are like a second mom and dad, but they live 900 miles away and we only get to see them twice a year. Daniel was placed on the Florida Medwaiver waitlist in the spring of 2003, and finally stopped waiting in September 2010. He only earned his rightful place through a crisis waiver after I was in a car accident and my lifting was curtailed.

The most important services we have now are respite and personal care for Daniel. This is huge. I usually get him up and out of bed, dressed, fed and ready for school before I leave for work at 7:20. After that my husband takes over and puts the finishing touches on his hair, brushes his teeth and gets his afo's on before transferring him into his wheelchair and rolling him out to the bus.

Today, Miss Rita came at 6:30 to help. We had coffee together until Daniel woke up, then I kissed him and got a few of his early morning smiles. I told him she'd help him a little more slowly than mom usually does. He's used to her because she's been coming over to provide respite since November, and even stayed two nights with him while I went out of town to celebrate my birthday. This was the first time I've been replaced for the morning school routine, though.

I love taking care of him, dressing him, feeding him. To me, it's a privilege to be that close to someone this far along in their lives. He's twelve, after all. But the whole point of the home and community based waiver is to give me enough help so that I don't have to turn to any sort of institution when it comes to his care. I'm forty-nine. I want to preserve my back muscles as long as possible so that I can do what I love, which is take care of my son.

My husband, his step-father, is able to get him to do things that I can't, like nod his head for yes. Daniel and I have had our own unspoken language for so long that he sees no need for that with me. So, Rich works and plays with him in the morning after I'm gone. He talks, Daniel listens. They have a great rapport. Rich broke his back in 1994, and lifting is difficult for him. So, we have a system where I have him up so that the only heavy lifting he does is transferring him into his chair.

To me this is a big step towards independence for all of us. It's time for me to share!

Sunday, March 20, 2011

Looking Back

Since I'm now blogging for free, I'm going through the old website and making sure I have a hard copy of things before I shut it down permanently. I won't miss spending the yearly fee to keep it going, especially since it hasn't been "going" for several years.

I had to open the site builder to view pages that aren't published anymore, and I read Melody's poems (all two of them, she now tells me she HATES poetry--how is it we're related, again??) I love the picture we took for her editorial section.

There she is, writing one of her two poems, Mystical Magic:
Mystical Magic
I love the day
I love the nite
I love how the lake sparkles
I love the mist in the morning when I wake up for school
I love when the rain comes down
I love when it is nite and the flame of a candle shines
I love the first day of school

By Melody Murray, age 7

Here's the other of the two poems she wrote, this one for Daniel:

Angel of Love
by Melody Murray 2003

I love the way he smiles
I love the way he sleeps
I love the way he giggles
I love the way he sees
He always sees beautifully
He is cute and cuddly
He is my baby

I took the poetry sections down several years ago, so I'm going to have to do a lot of printing to save them. It's kinda bitter sweet taking the site apart. It was a great outlet for me for a long time. It helped me connect with other moms way before Facebook. I write more than I talk, so it was therapeutic and fun. The blogging forum is more immediate and less formal, though, and I'm looking forward to diving in.

I'm grateful Daniel was born in the computer age. It would have been very lonely without the micro listserv, the first that I joined when he was only a few months old. Later there was Angelbabymoms, and then Molehill Moms. I've met some incredible people through the internet, learned a whole lot that helps me navigate through the disability world, and just been able to be a more social version of my introverted self without having to leave home.

Here's to change!