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!

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.

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

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.

Play me a song, my keyboard man!

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!

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!

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.

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!

Our Boy over the Years

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.

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.