My Son, My Rain: Weather Report from a DMD Mom

New Address

2011-01-11T14:55:00.002-07:00

This blog has moved. Please find us at http://www.livingduchenne.blogspot.com/.

Resolutions

2011-01-07T14:14:00.000-07:00

In two categories, for your convenience!

Currently Working
* Include at least one vegetable or fruit in every meal. Brighter, fresher, wholer.
* Do at least a 20 minute yoga video everyday.
* Volunteer in Hazel's classroom.
* Play outside more.
* Family field trip at least once a month.
* Balanced budget.

Pending Your Approval
* Update this blog more often.
* Raise more money for PPMD (http://www.parentprojectmd.org/)

I have been considering the possibility of selling ad space here and donating the proceeds to PPMD. My thoughts have been back and forth. I don't want to commercialize this space or detract from what I see as my public service mission: presenting a unique and personal view of coping with Duchenne. On the other hand, the potential revenue from this blog represents an opportunity to help in a small way to raise the enormous amounts of money required to eventually End Duchenne. Please comment on this post, loyal readers, so that I can get your feelings first. I shall approach PPMD for their official opinion as well and hope to reach a decision by January 15.

Many Happy Returns of the Day

2011-01-05T09:38:00.000-07:00

What a perfectly beautiful birthday yesterday! It had all of the necessary elements: Free time with my dear Birthday Twin, Kate. Trendy breakfast out. Good and really good art. Silly and thought provoking local history. Puttering. Birthday kisses and hugs from the darlingest children in the whole wide world. A party. Really good, thoughtful presents. Shrimp scampi, Italian wedding cake, champagne and coffee. A fluffy new book, read cover to cover in one go. Laughter, love, light. I feel completely loved, totally refreshed. Ready to have a great new year.

The Joy of Building

2011-01-02T13:43:00.000-07:00

That darn house! It's almost done, it's almost done, it's not, no it's really not really almost done at all. The whole point of the project, the one and only reason why we're doing it at all is to make a house that is fully handicap accessible. We've made this clear to every member of the team from the very beginning. Sadly, the building industry has not fully incorporated the ADA into its very soul as it ought to have done a generation ago. Sadly, some people just do not understand what it means to be accessible. Some people have no sense of empathy; no ability to imagine themselves in a position they do not currently occupy. Or maybe it was just a computer glitch. In any case, the cabinetry is all wrong. Every piece of it is 3 to 4 inches too tall. Some of it is annoying and we'll just have to force ourselves to get used to it anyway. Some of it is embarassing; it makes it look like we don't understand the needs of the people we want to invite over. Some of it is so unusable as to be totally unacceptable. Almost all of it needs to be redone immediately. The time! The money! The wasted effort! The money! The time! Arghhhhhhh! !!! #$%&!! !!! !?! !!!

Thank god, thank heavens, thank everything that it's "just" the cabinets. It's not the roof. It's not the windows. It's not the mechanical systems or the plumbing. It's not the tragic strangulation of the architect by his distraught wife. A few cuts here, a new countertop there and we're back in business. Another month or two, another few thousand dollars ...! Just don't tease me for the June Cleaver look in the kitchen: high heels are a lot less invasive than new cabinets, though I admit, when I wear the pearls I'll be doing it out of spite rather than a keen sense of fashion.

Merry Happy Everything Card to You

2010-12-30T11:50:00.003-07:00

You should be able to read the letter if you click on it a few times. Please comment if you can't enlarge it enough to be legible and I'll retype it here.

Merry Happy Everything to Everyone!

Milestone Update

2010-12-13T20:04:00.000-07:00

The milestones of the past month:

* Computer died. Again. It was ugly and it's not going to happen again, again.
* Rain swims unassisted from standing in shoulder deep water. He yells, "watch me swim!" then dives in with arm strokes and legs working for up to 3 feet, then returns to confident standing. Amazing.
* Rain jumps with both feet together on the trampoline, confidently walks down small steps and sometimes up, and walks with gusto over all kinds of terrain ... all by himself.
* Rain takes off socks and pants without help. With only a little help, Rain puts on pants and shirt. He unzips, removes and hangs up his coat and hat. There is hope, people!
* Took the kids to see The Nutcracker at the local theater for the first time. We're obsessed and both kids can narrate the action well from audio only. You should see them dancing! Hilarious and fun.
* But you can't see them dancing because the camera broke for the last time too. Just in time for you to not see pictures from Hazel's birthday party.
* Hosted an outdoor birthday party for 5/6 year olds in December. Really, we had no choice. One house is too tiny, the other a construction zone and I am unwilling to spend hundreds of dollars on a child's birthday party. We had no snow and hurricane force winds, so no sledding and no bonfire. But the mulled cider was good and hot and our friends are both cheerful and real troupers and the kids had some fun.
* First visit to the eye doctor for Rain; at least the 10th visit for Hazel. Doc says, "Rain needs glasses for night driving." I think we'll hold off on that for now .... Hazel, however, has been prescribed bifocals. I kid you not. They'll arrive on Friday and are just darling. I'll show you a picture when ... when ... when we move into the new house and Scott has a job and we have plenty of money and buy a new computer and a new camera and pigs fly. It might be sooner that you think.

Nothing But Grateful

2010-11-29T08:49:00.000-07:00

In no particular order:

* A future to look forward to
* A past where trouble is easy to forget and sweetness easy to remember
* Loving friends
* Actually using my high school French and Spanish
* Family gathered around the table
* The sweetest children in the universe (at least they are to me), even if their noses are stuffy and they can't sleep
* The most patient, hard working husband ever (at least he is to me)
* The promise of radiant floor heating and insulation and well sealed windows if I can just hold out another 6 weeks or so
* The tools I need and the strength to keep on going

Are you ready to See It?

2010-11-17T11:35:00.000-07:00

I'm thinking it is high time to start a virtual tour here. Would you like to see this place that's been taking over our lives for nigh on two years? Our builder, an optimistic guy to be sure, thinks it may be ready mid-December.

View from the south, the private garden side.

Stream

Fire pit on right.
Huge wooden structure on left is actually a swingset. Yes, it's 15' tall. No we're not kidding. We have no mature trees on site so we had to build an artificial tree swing. Imagine it in summer covered with hop vines.

Trampoline. Secretly everyone's favorite feature of the whole project.

Pergola back porch

Scott's office. Also Grandma and Grandpa's visiting suite.

Interior of office/guest suite

Kitchen. Imagine the smell of freshly baked pies and we're almost there.

Center of the home

I am so excited!

Ode to a First Snow

2010-11-15T15:37:00.000-07:00

Deep Thoughts, for a change

2010-11-09T12:56:00.000-07:00

How do children develop their musical taste? Hazel and Rain are currently in love with three musical offerings: Abba, The Gypsy Kings and Tchaikovsky's Nutcracker ballet. How is that possible? But they are singing, and playing and dancing and developing their musical functions with joy. I really can't complain.

Hallowed Mayhem

2010-11-01T16:28:00.002-06:00

Emphasis on the mayhem I'm afraid. We've been so busy, so crazy that these are the best pictures we have from all of the activities of the past month. We've been well, despite fears to the contrary, we've been showing 906 Wild Cherry a lot, we've been to three excellent Halloween parties, we've eaten more apples than you can shake a stick at, we've been fairies and princes and princesses, house builders and pumpkin axe murderers. Here's sending love and gratitude and peace and fun and health to all our friends, ancestors and loved ones in the wake of a busy season of growth.

906 Wild Cherry Lane for Sale

2010-10-01T15:02:00.000-06:00

The Best Way to Deal with ...

2010-10-01T13:32:00.000-06:00

It isn't pretty. It might not be exemplary of excellent values. You do get beat up (once). But the long term outlook is much better.

When faced with a bully, or any maniac wielding a double edged sword for that matter, all I can think to do is what my mom told me when I was in preschool. Ignore him (or her), Run Away, and ask a Grownup for Help.

It's my current plan anyway.

And now, draw the curtains, lock the doors, and snuggle in for a nap.

Focus

2010-09-19T10:32:00.000-06:00

Sometimes ... it feels like my whole self is pinpointed on what I cannot do.

I took the kids to the Rocky Mountain Sustainable Living Fair for the first time this weekend. So many of our friends were there. So much of it was what we used to enjoy. In years past, I would have felt completely at home, totally blissed out. I would have felt supported, encouraged and inspired. This time, I just felt the ghost of that former self, those former dreams, those lost expectations. I watched a baby climb to the top of the slide that was so high I could not help Rain to the summit. I watched a boy a few months younger than Rain run and play with a spirit of abandon I can't recall anyone in my family ever embodying. I walked behind a one year old who was twice as fast as my three year old. Somehow, though, the poignancy was less severe, the pain was less intense than it has been in the past. Somehow, I was able to enjoy it for what it was: an exhibition of a lifestyle that doesn't fit for me, a reminder of other people's dreams. It was even fun. Just not reflective of my needs and realities. And that's ok. My needs are different from theirs but so are my resources.

Other times ... Just as we appreciate the warmth of summer only once autumn raises her mists, I think I am beginning to appreciate the special gifts of what we can do.

Those sweet boys who run and jump and climb could not be as sweet to me as my own little Rain. Slowed by Duchenne, he's easily accepting of a kiss and a cuddle; tired out by Duchenne, he reaches up for me a hundred times a day to ask to be carried; sensitized by Duchenne, he worries over the details and teaches me to be careful; sweetened by Duchenne, Rain remains my baby even as he interrogates, investigates and plays through his world. It seems ... unseemly, perhaps ... inappropriate, maybe ... to talk about a silver lining, but I think there is one. How else to describe the sensation of intense, aware appreciation whenever I hear that jolly big laugh with which he errupts so frequently? How else to describe the gratitude for the friends, opportunities and experiences that have come our way because of Duchenne? Building a house (and building Scott's career). Me networking (!) and the sense of purpose, connection, and service it has given me. Travel. Refinement of dreams, awareness of the self-creation that is the root of true happiness. Humor. Understanding and valuing traditions that never made sense before. Sunday family day. The huge impact of the small gesture: a glass of good wine with a friend, staying in your pajamas until noon, knitting just one row in a quiet moment, a bedtime prayer.

The powerful expression of hope that is construction dust.

How distinguished and handsome one looks in a big white beard.

The healing power of a hot bath, with bubbles.

Overheard

2010-09-13T20:51:00.001-06:00

Conversation 1

Rain: "Let's play Balcony!"
Hazel: "All right."
Rain: "You're the balcony!" Giggles.
Hazel: "No! You're the balcony!" Chuckles.
Rain: Guffaws. "No, you're the balcony!" Guffaws!

------------------
Conversation 2

Mom: "I'm going to a Buddhist retreat next week."
I: "Oh yes?"
Mom: "Yes." Slight pause, sounding puzzled. "They didn't tell me to bring anything."
I: Holding back laughter. "You don't need anything."
Mom: Pause.
I: "No really. You don't need anything. Release your worldly attachments!"
Mom: Silence.
Dad: Snickers.

Autumnal Free Association

2010-09-12T20:22:00.001-06:00

First Frost
A Four-Pie Pumpkin
Homemade Stew
Knitting under the Maple Trees
Halloween Costume Planning
Farmer's Market
First Apples
Last Peaches
Roasted Chiles
New Wool Socks
Needing to turn on the Lights at Bedtime
Snuggling under the Blankets with a Good Book
Grasshoppers
Sunday Family Day

A recommended activity:

When cleaning up the kitchen in the morning after going to bed (early!) with the place a mess, it is best to have a lively three year old companion. You and your companion put on funny hats and either wings or capes. Turn on ABBA moderately loud. Grasp your tools firmly, Mama's sponge and Companion's two fairy wands (with ribbons). Then clean/dance/laugh/sing until the job is finished. It's even better if there's a pillow and three tennis balls in the dryer. And make sure the windows are open wide.

Thanks for the help today, Rain!

Stress

2010-08-26T10:37:00.000-06:00

Dear readers, I apologize for the inadvertent blog sabbatical. As the saying goes, I've been so stressed I can't breathe. Unfortunately in my case, that has been literal. I've finally been diagnosed with asthma and allergies, exacerbated of course, by extremem stress. Fun fun fun. After going through western herbs, over the counter pill, nasal spray, antibiotics, prescription sprays, acupuncture, Chinese herbs ... now I'm dealing with a steroid inhaler and all of its lovely side effects. Ah prednisone, how we love your shaky muscles, your encouragement of yeast problems, your mental fogginess, anxiety and anger and depression. And I'm on a tiny dose. Dear, dear Rain I am so sorry that this awaits you, only so much more so. It's not fair.

Also in the category of Not Fair is the recent judicial decision, followed up by the NIH, to stop federal funding of embryonic stem cell research. I have never understood the obsession that some men have with controlling women's reproductive miracles to the detriment of humanity as a whole. Thank you so much! The consequence of your concern for the "potential children" represented by those unwanted embryos produced as a result of fertility treatments (embryos which are destined for the trash can, by the way) is that my son, an actual living child continues to be robbed of his potential because of Duchenne. Those clusters of stem cells could produce a treatment, a healing option for the muscle tissue, which could reverse the now irreparable damage done to muscle by a lack of dystrophin. How is it different for a woman to donate her kidney (a bunch of her cells that cannot survive without the rest of her body) than to donate her embryo (a bunch of her cells that cannot survive without the rest of her body)? Come on people, medical research is necessary and good. Fertility treatments, embryo debates and the whole manipulative abortion debate are neither necessary nor good. What ever happened to adoption ... and medical research ... compassionate choices for everyone involved?

Oh yeah, and there's school. I still haven't been able to sort out my mixed feelings about school. Hazel started Kindergarten two weeks ago. She has all the feelings that I have about it: shock, confusion, excitement, fun, frustration ... only where I have firmly entrenched hatred, she expresses love. I feel like a total failure for even sending her in the first place. The intrusions of school on our family life are awful. The fights over getting ready, getting enough rest, getting enough play! I keep telling us both that we're just not used to it yet. Hazel says she loves Kindergarten despite the shock of not having enough time to eat or play, but she doesn't think she wants to go to First Grade. I told her we'll get to that when the time comes. Why am I sending her to school in the first place? To a hectic place that doesn't meet her basic needs and fills her head with questionable ideas in a way that makes no sense to me? I don't think it is fair to her to drag her to all of her little brother's appointments, which is the alternative to school. Because school is the only place for Rain to get all the therapy that he needs from trained PTs and OTs. The alternative is that I take it all on myself. So once again, I am doing things against my better judgement because I feel I have no choice. I have compromised my basic values again and I grieve that I have, once again, failed my children. I have failed to give them the kind of childhood that I think they deserve and have instead given them something much to closer to the kind of childhood that I feel I had. All because of our lovely friend, Duchenne Muscular Dystrophy.

And we're building a house. The project is mildly delayed. We're feeling mildly neglected by some of our subcontractors, mildly betrayed by some of our design team. People always say that building a house is a major player in getting divorced. I can see why, with all of the unnatural pressure, the highly personal quality of the process, the vast commitments of time, energy, money and love. Luckily in our case, divorce is a very unlikely option since I really do believe that this project will kill us first. Whether it's my lungs or Scott's heart remains to be seen. Scott's stay in the hospital for atrial fibrillation a few weeks ago was brief but dramatic. Luckily, his forays into a daily beta blocker and aspirin regime seem to be working.

Well, apologies again for this incredibly negative blog entry after such a period of silence. But really, if I don't tell you the truth, who can I tell? And, after all, in the spirit of our brave friend Josh Winheld, if I'm going to talk about life with Duchenne, I had better expose the icky and embarassing parts if for no other reason than to provide a record for researchers or to set an example of how not to do things for your edification and amusement. Thanks for your patience. I promise my next blog entry will be both soon and positive because really a lot of good things have been going on as well.

Respite

2010-07-19T09:34:00.001-06:00

Such a lovely Sunday just like old times! Auntie and Uncle came over for breakfast and stayed until after supper. We cooked, we ate, we talked, we played. We got just the right amount of housie-mousie work done too. And everyone was well enough to enjoy the day together. It was the first time since Thanksgiving; the first time since Paul got sick. We laughed and relaxed more than we have since last autumn.
I wish we could have many more days like that. Every week for the next forty years. All together. Please.

Two Years Plus Seven Days

2010-07-02T15:45:00.000-06:00

On June 24, 2008 I had never heard of Duchenne Muscular Dystrophy. On June 25, 2008 Rain was diagnosed with it. We attended our first Parent Project Muscular Dystrophy Connect Conference on June 25, 2009. This past weekend, we attended our second PPMD Conference-- Scott as a speaker, me as a FACES Coordinator. What a rush!

I am eternally grateful for the amazing, dedicated, fun and hardworking souls at PPMD http://www.parentprojectmd.org/. The work they do makes a huge difference for the families who live with Duchenne. The Parent Project agressively funds and supports research to cure DBMD; that is their first mission. Their second mission is almost entirely budget free and it is to facilitate parent to parent and family to family support. The FACES program is PPMD's regional answer to that volunteer support as Families Advocating Connecting Educating and Supporting. I am blessed to participate in this organization. I am so glad I do not have to invent it from scratch!

The Conference is a powerful experience and coming back from Conference is just as strong. At Conference, we are suddenly surrounded by people who Get It. They know what we are going through because they are going through it themselves. When we are together, none of us is "the weirdest person in the room" and all of us are accepted and loved and valued whether we know it or acknowledge it or not. We are a real family. To me, this is one of the gifts of Duchenne. Yes, Duchenne is hard and horrible and frightening, but it has these kinds of silver linings: a deeper appreciation for the blessing of life itself, a profound connection to people from a vast variety of different backgrounds and experiences. Duchenne does not discriminate; it affects approximately 1 in every 4000-6000 male humans the world over; at least 40% of the people affected have a new, spontaneous mutation. At this year's Conference I met people from Israel, from India, from South Africa, from Australia, from Canada, from Holland and from all over the United States. I met researchers who have dedicated their lives to finding a medicine for my son. I met people whose known family history with Duchenne is almost as long as mine. I met inspiring men who are living with this disease but who don't let it dominate their lives.

I have come back sustained, inspired and supported ... and drained, exhausted, confused and lonely. There is so much to do. There is so much to take in. It feels like such an effort to come back to "mundane reality" where each step requires multiple explanations. Yes, actually, we really need that doorway to be 36 inches wide so that a person in a huge power wheelchair can get through it without scraping (unless he happens to be a teenage boy, in which case we're just trying to stack the deck for a little less property damage). Yes, in fact, we do take 45 minutes twice a day just for stretching. Actually, we are entitled to use that parking spot because Mama has to save her back with Mr. Thirty-Five Pound Sack of Potatoes who says "carry me" and really doesn't hold on at all.

But we just carry on. We're going to spend a lot of time re-explaining and a lot of time educating not just because we have to but because we have to, if you know what I mean. It's important. And we're going to spend a lot of time driving, and volunteering, and advocating, and talking on the phone. Because it's important. And we are going to go to a lot of appointments and do a lot of stretching and a lot of soul searching, because it's important. And we're going to do our very best to have fun and love each other and Live our Lives because that it what is Truly Important.

Ride on, Cowboy. If you fall off, don't mind the bruises, just get right back up there and keep on keeping on.

Tapping My Ruby Slippers

2010-06-23T10:35:00.000-06:00

The Beautiful Game

2010-06-12T20:39:00.000-06:00

Ready for Tiger Hunting

2010-06-02T20:30:00.003-06:00

So, grasshopper, you are feeling challenged by the Year of the Tiger? You thought you would be able to count the string of bad days, thus reminding yourself that your (bad) days are numbered? Ha, you fool! Your days are numbered, for sure, just not in that way.

Rain fell today. Just like yesterday. And the day before. And the day before that .... Only today he fell on the cement patio. Oh, and he doesn't have that reflex to put his arms out to protect his face. Even after ice, arnica salve and homepathics, the scrape and bruise in the middle of his forehead is a 3" diameter. Seriously. Oh, and you know how I mentioned yesterday? That was when he fell down the stairs. Lovely cranial bruising on that one too. Pretty much the kid looks like a losing boxer. Is it wrong to put him in a bike helmet 24/7?

Tonight's dinner/bedtime adventures involved 4 time-outs, 2 hits (kid on kid), 1 bite (kid on kid), 2 stubbed toes (both mom on bed), chore shirking and consequent loss of priviledges, and way more yelling than should be allowed. My children have learned that I will ask them nicely while they ignore me three or four times, then yell, then time-out ... seemingly endlessly. I can see the final thread of my patience, just barely, in the rear view mirror. I can't honestly actually picture getting it back again.

Oh, did I mention that it's finally summer so all the windows are open, thus all the neighbors can hear me ... all the time. Probably shouldn't have shouted, after the second stubbed toe, which was the result of trying to hang up the fourth load of laundry onto the drying rack that has to live in my bedroom because there is no laundry room and thus squeezes in too close to the bed with wooden legs that really hurt when you bonk your foot into them, again, because two whining children were climbing on you while you were trying to get the wet laundry off the bed where it had to be because the basket was already full of clean laundry that has to get folded ... "I hate everything about this house!" right next to the open window. Yeah. That.

Not that that is sufficient. I have developed allergies this season which have lasted for more than three weeks nonstop now, causing me to be unable to breathe properly. Yesterday, finally fed up with the homeopathics and herbs and nutrition which weren't helping much, I took the over the counter allopathic. It had no effect on my symptoms but did render me incapacitated due to light headedness and fatigue. Plus I haven't been able to hear properly since March, which causes me to have a tendency to yell and be frustrated ....

Now a computer virus has eliminated my computer, so I have to work when Scott can generously donate time on his computer until mine gets fixed. So, looming deadlines for all just became more high pressure. Somehow also, we have been deluged with seemingly fraudulent telemarketing this week. I've always been susceptible to conspiracy theories but I think somehow these two things are not coincidental or random.

Good. Now I sound completely insane as well as tired, frustrated, angry and fed up.

But what I'm really worried about is an ailing friend. Know that the less I say about it here, the more important it really is. There isn't anything that we can really do right now except love and hope. Which I do.

I feel like I've utterly lost touch with any spiritual center I may have once had. I'm adrift and it's making me sick. How does a person regain a sense of faith and equanimity in the face of despair? Did I ever have such a sense to lose? It's not a question of making it from day to day, because I'm doing that, surely, just by getting up and feeding kids and washing clothes and trying to do my work and not let everybody down. I guess it's more a question of seeing the point. Or accepting that pointlessness is ok.

There is and/or may be no point. Accept this, grasshopper, and just breathe.

A Photo Montage of Spring

2010-05-28T08:49:00.008-06:00

Update on the Overwhelm

2010-05-19T21:10:00.004-06:00

Overwhelming. That's what it is, this life of mine. But there you have it. Briefly:

* Paul's in the hospital. He's on some mighty antibiotics on top of the chemo and whatever else they're doing now. His cancer is a type of leukemia that affects the T-cells, those little good guys who eat up all the things that make us get sick (how's that for a technical definition?). That means that his immune system is not working properly (to put it mildly), hence the severity of these several infections he's fighting. Actually, he's doing better than I expected .... They're saying he might be able to come back home in "a few days," making his stay in the hospital less than two weeks in total. I hope so. Laura's hanging in there like the champion that she is.

* Sudden (always welcome but still on this list) visit from my parents. It's always great to see them but I never manage to get much work done when they're here. The kids were particularly thrilled to have them here, even for just one day. They'll be dropping in on us next weekend too.

* End of school year, end of therapy year, lots of parties. It's all good, but when there's so much, still stressful.

* Groundbreaking on the house. Push, push, push with those plans and details. Constant meetings.

* Planning the PPMD Conference. Lots to coordinate. Jumping Jack Golf Tournament too. I have plenty of time to pull it all together, right?

* More PPMD stuff in the works. Call here, research that, set a meeting, coordinate with other parents, ...

* Yet another round of sneezes, sniffles and cold symptoms for me and the kids. No more visits to Uncle. Have to make a really nice card as there's no time for the blanket I've been really intending.

* Fridge is empty except for two gallons of milk. Gotta make cheese, waffles, crepes, m&c ...

I'm sure there's more, but you get the gist. My mom suggests that I could try saying "no" more. I told her there are some things I just can't say "no" to. ... For instance, I've got some people coming to visit next weekend.

Wish me luck!

Mothers Day

2010-05-09T08:56:00.002-06:00

This is my Mothers Day card to all of you Duchenne Mamas (and me too).

This special day can be a challenge. It is so easy to fall into the trap of comparison. Our mission, our children, our lives are different. We are different from other people, different down to our beautiful, twisty, unique DNA-- even the places where it has "gone wrong." Our strength is not the strength of others; our power, our skills, our dreams, our expectations, our awareness comes from another source.

Duchenne is not your fault. You are working hard enough already. Your son (or daughter) is beautiful.

It is obvious to us that we find alternative ways to do what we need to do. We use wheels for legs, we use elevators for stairs, we ask our working dogs to be more than best friends, we show our strength with words and images and dreams. Let's have some alternative comparisons as well.

With Duchenne,
His every step is as great as Neil Armstrong's most famous.
Getting out of bed, each and every day, is as arduous and impressive as any Everest ascent.
Maintaining hope, continuing to smile, appreciating each moment are the qualities of sages and mystics.
Just breathing is the work of a hero.
You are doing a great job! You are living success. You are gods and goddesses, heroes, saints and geniuses; kings and queens and presidents of a different kind of country.

I love you and I am proud of you.

More Fabulous Prizes

2010-05-03T10:13:00.004-06:00

My friend and co-coordinator for the Parent Project Muscular Dystrophies' FACES of Colorado and Wyoming program, Angela Knight, hosts a golf tournament every June in honor of her son, Jack, who has Duchenne. It's called the Keep Jack Jumping tournament and you can join in the fun at http://www.keepjackjumping.org/ with your tax deductible donation to PPMD. You can also enter the silent auction to win this: A one week stay at my parents' house in Honolulu. See you at the tourney!

Really Big Trucks

2010-04-30T14:46:00.006-06:00

Have I mentioned that I am so proud of my wonderful husband, Scott? If I haven't mentioned it in the last 10 seconds then I haven't mentioned it enough. I am really proud of my wonderful husband, Scott.

We just had a great meeting with The Builder. Our Project Manager (K.C.) introduced us to the Superintendent (Bob) and we went over the budget and the timeline. Bob complimented Scott on the accuracy and detail of his plans. He said that he's a stickler for tidiness on site. And we talked about really big trucks. No really, I mean really big trucks. Like a four storey crane. Smart, experienced men who really know what they're doing and the heavy machinery that goes with them. I think I may have to swoon.

This project is so big and so complicated that we are officially considered "commercial." It's not your ordinary 4000 square foot ranch; it's a really weird 4000 sq ft ranch with major windows and mechanicals. We've got a heated driveway. We've got a (pretty) massive solar array. We've got gear, baby!

Bob is going to set up his trailer next week, complete with temporary driveway and office space for mandatory weekly meetings with all of the subs. We'll have a "scraped and scrubbed" site by May 20. Party on Friday, May 21. If all goes as planned, we're looking at getting the keys for our Christmas present. In between we'll be enjoying just about as much really big truck action as a three year old boy could wish for.

Oh, and-- I invited them to come to the Keep Jack Jumping golf tournament that benefits PPMD coming up this June in Denver (http://www.keepjackjumping.org/). So we got to talking just a little bit about what Duchenne is. Bob mentioned that when he was in high school he volunteered with a group of kids with disabilities. He remembers fondly the set of brothers with Duchenne with whom he worked and played.

What a great team for this amazing project! I'm really having fun.

Happy Birthday, Baby

2010-04-25T08:12:00.002-06:00

Happy, happy birthday, my sweet little boy. Three. You are a miracle and a joy, now, always and forever. Nothing, no one, never could ever make you less than perfect. I love you no matter what. Even if I'm too sick to actually post this on your special day, April 23.

On Being Diurnal

2010-04-06T10:41:00.004-06:00

It often happens that I am gripped by overwhelming Existential Angst in the late evening, usually around 11pm, although last night it was more like 9:30. I must be getting old.

You're saying to yourself, "But I thought that Existential Angst was something that you get over once you're old, like pimples and other teenage afflictions."

"Ha!," replies the Teenage Affliction Fairy.

As I was saying, I suffer from frequent bouts of Existential Angst. Not so much of the Why Are We Here variety, more of the O the Pain and Suffering Amidst the Joy variety. I am struck by a kind of awful Preemptive Grief. A Horror of the Pain to Come. You see, I'm so terribly happy at times that the very experience of joy rolls over suddenly to show its dark and creepy underbelly: Fear of Inevitible Loss. Even under perfect circumstances, we will all, indeed, lose everything-- home, love, family, comfort, life and self. How can we go on knowing that all, all is Doom!?

And then, I wake up in the morning. And all is not lost, yet. We have all that we need, all that we have worked so hard to build. It is all so solid, so stable, so real, again, despite the terror of ephemeralism, revealed by the night .... In the morning, under the radiance and warmth of the sun, in the brightness and hope of day, Life is Worth Living, whatever its form. It is a grand and amazing thing to choose to live, to choose to go on, to choose the possibility of a future for coming generations. In the morning, it is somehow all right that we live and we die, that pain is just a part of it all and that that is both necessary and acceptible.

Some people think I should go to bed earlier.

Life is Educational

2010-04-02T14:36:00.018-06:00

Some of my best comments on this blog actually occur in person, or sometimes over the phone.

Over the past couple of days I went ahead a took a look back at what I've written here and realized a few things. I think I've given a pretty good account of my transforming emotional state, coming to grips with living with Duchenne. This has been a very subjective forum for me, deeply personal, but always with the hope that someone reading here might benefit from watching my experience as I have been comforted and inspired by learning about the experiences of others. But where I have made some of my biggest adaptive changes, I have tended to imply rather than tell. So, here are few things I have decided might be important to tell.

Practical Things My Family and I Have Done in order to Deal with Duchenne

* We chose right from the beginning to pursue a Therapy Intensive Lifestyle. At the beginning, we didn't realize that it was a choice, but it was. We could have chosen to do a little more "letting nature take its course" and continued to live a calmer, more home-centered life. But we felt that aggressive action was the only right thing for us. Over time, as Rain's skills and abilities have increased (because he is still growing so quickly that his muscles are still building more quickly than they are decaying), we have become somewhat less urgent in our therapy goals.

Our current list of therapies:

Physical therapy, in home. Recreational therapy, in pool. Massage (professional). Chiropractic. Stretching, at home, twice daily. Vitamins (multi and Calcium).

We used to do more-- feeding therapy, homeopathy ... but have managed to cut it down to four appointments a week. When everything is of benefit, it can be hard to weed it down to what is essential, but we've tried. It makes for a grueling schedule, but Rain has benefitted so much from learning the physical skills that his impaired motor planning and generalized low muscle tone were preventing him from doing spontaneously. Some of it he loves-- the swimming and the massage. Some are more challenging. But these are what we have felt are "worth it."

* I Volunteer for the Parent Project Muscular Dystrophy as a FACES Coordinator. FACES is our parent-to-parent outreach and support arm of PPMD. I find it helps me tremendously to have ongoing, meaningful work that makes a difference in the quest to End Duchenne. I love to feel like I have fulfilled my duty at the end of the day.

* We changed the way we cook. We bought a Large Freezer. We bought bigger pots and pans and lots of freezer containers. Whenever we have time to cook, we always make a double (or more) batch and freeze the leftovers. Convenience food is essential to this lifestyle but there's no reason why it has to be highly processed or even store bought. We just pop something we've frozen into the microwave and we've got a quick, no-thought-required homemade meal. Scott and I cook together at night when the kids have gone to bed. We cook on weekends. When Rain was first diagnosed we had no freezer ... and ended up eating in restaurants at least 4 times a week. Planning ahead for homemade is so much nicer! Believe it or not, being able to feed ourselves out of our own kitchen again has been a huge accomplishment for our family.

* We bought more clothes. More clothes = Less frequent laundry. We can get by on doing laundry just once every two weeks or so (it takes a couple of days). I let the clean laundry pile up in the basket until we have time to do a marathon folding party, which we do together as a whole family (sometimes that takes more than a couple of days). Sometimes we read each other stories while folding.

Rain also wears "paper diapers" (disposables) nowadays, rather than the cloth diapers that we used to love. That was a major decision, based on several factors, but we finally did it because the bulk of the clothies seemed to be getting in Rain's way as he was trying to learn to sit, crawl and walk. Less laundry was a bonus, but hey, we'll take it.

And, er, we don't really change the linens much. Perhaps acquiring more linens should be on my list.

* We Delegate. We hired a cleaning service. We hired someone to run our errands (Temporarily, when we were particularly overwhelmed. I miss seeing our friends at the grocery store!). We hired a babysitter to watch the kids (it's only three hours, twice a week, but it really makes a difference). Finding out what responsibilities we could afford to "give away" and then doing so was a very big deal.

* We Schedule. Oh baby, do we ever Schedule! We schedule all of our appointments, of course, in a single, centrally located calendar. But we also schedule time together and time off. Scott and I each take a "day off" one Saturday each month. We have a regularly scheduled "date night" every week. "Date Night" just means that when the kids have gone to bed, Scott and I put everything else away and spend time talking and getting to know each other again. We make it a rule not to use this time to talk about work, scheduling or children. We schedule in other time for those topics. We schedule quarterly "retreats" or if we can't manage even a weekend trip, we schedule "therapy holidays" when we do none of the usual schedule for a week (Spring Break is a great example). When we're on a retreat, we do not deal with anything medical unless it's an emergency.

* We make time to do things we love to do and we try new things that sound like fun. I love making stuff. I love spending time with my family. We love to cook and to eat good food together. We love to camp and to travel. We love spending time outdoors. We try to make sure that each person gets a chance to do things that feed his/her soul. Hence, despite the fact that I hadn't found time to go to the grocery store personally in more than a month, we spent time over Spring Break making mozzarella cheese and homemade pizza crust for dinner. Yummyness is a high priority around here.

This summer, since the therapy schedule drops off quite nicely for a few months (down to just one appointment per week and that's a massage), we have time to each choose one activity to do or to learn (besides our requisite month of swimming lessons-- a beloved and necessary activity). Rain plans to take a music class; Hazel is looking forward to horseback riding. Scott is going to learn how to play golf. I'm planning to ride my bike to my favorite local yarn shop ....

* We make time for beloved friends and relatives. Perhaps not as much as we would like, but we connect with loved ones when we can. There is nothing like being surrounded by people who love you and whom you love.

* We Say No. A lot. Feeling, as I do, that there is no time to waste, I try to make sure that my time is spent in the way that creates the most joy out of each moment. For every opportunity that comes up, we evaluate whether it is a "high priority, high yield" activity for us. If we feel that a particular activity is not "high priority, high yield" we don't do it. Some of these decisions have been difficult, some easy.

* That having been said, you can probably infer that there is a lot that We Do Not Do.

We do not attend to any kind of regular religious/spiritual practice. We have even selectively chosen which holidays to celebrate and which to ignore. This was one of those tougher decisions on what to Say No to.

We do not do any kind of regular exercise. Scott and I are both feeling that this is a mistake which needs to be remedied, but neither of us has managed to make the time for it yet. I (at the moment) categorically refuse to get up at 5am to do something I've never liked. We'll see how things change over time.

We do not sleep as much as we would like to. We're always up by 7am, usually not in bed until 11pm or later. We spend very little time doing things like sitting or resting.

We do not watch television. Scott and I have gotten into a one movie on Friday nights after the kids are in bed pattern over the last couple of months, and I'm starting to feel like we need to cut back. It just takes up too much time that could be spent on real life.

* We do some things on a smaller scale than we would like to.
I do make things, but each project takes a long time since I don't get a lot of chances to work on crafty things. I no longer attend regular crafting circles (for now).

Likewise, I don't read as much as I would like to because when I do get started in a new book, I find it extremely hard to stop ... for any reason ... until I finish! ... which takes up way too much of my time and energy (and potential sleep hours).

We gave up a large, far away plot in a community garden for a couple of pots on the porch instead.

The point here, is that Life is full of Choices, grasshopper. You can do anything you want, you just have to choose what you want to do and what you are willing to give up. Then you go out there and do it. Easy. Sometimes.

Renewal

2010-03-23T15:40:00.008-06:00

Today I am sitting, cosy and warm in my little house as the snow pours down all around us. My children are playing together, more or less contentedly, building a "secret home" out of fabric draped furniture. It is always wonderful to me how periods of turmoil, stress and activity are inevitably followed by times of quiet, contemplation and reflection; the cycles of Renewal.

Last week, The Schedule stopped. We took a much needed break from the hamster wheel of daily stress. In short, it was Spring Break.

In the sunny, warm days before the inexorable spring snow storms, we spent our time peacefully playing in the sun. We have a lovely, if tiny, private courtyard with southern exposure where we have a place to sit, plants poking their little spring shoots up and a just-big-enough-for-two digging spot that the kids love. With a basket of shovels, spoons, bowls, sieves, old tea things and a box of sidewalk chalk, Hazel and Rain played happily in this little garden for days. I refinished a free glider in much need of renovation. Now it is a deep blue, smooth and weatherproof and ready to seat us comfortably all summer. At the last possible minute, we fled indoors from the inclement weather to play at some indoor projects.

What a delightful day we spent in the kitchen as the snow came down outside! We made cheese. Like from scratch. A gallon of milk and 1/2 an hour of stirring and stretching and we had our very own fresh mozzarella cheese-- sweet and mild. We used the whey to bake a delicious whole wheat pizza crust. A few toppings and the fresh cheese, a bottle of wine for the grownups and we had an easy, healthy, satisfying homemade feast.

There's something about dining well that encourages good thinking for me. Either that or great insights always occur while doing the dishes. In either case, while doing the dishes I had a moment of clarity.

I had always envisioned another life for myself and my family, in the absence of Duchenne. I had imagined myself, a devoted housewife, mother to a large family, leading a natural lifestyle. I imagined playing and working together, making things from scratch. I imagined knitting and sewing our clothes, baking our bread, making yogurt and cheese, growing a big garden and putting up the veggies to eat all winter. I imagined kids playing outside in the sun, making snow angels that look like we're bundled in 14 layers of wool because we are. Sipping tea in the evening and listening to gentle sleep breathing from dear children snuggled into soft beds. I imagined nursing them through childhood illnesses with chicken soup and cuddles. I imagined losing and regaining my temper again and again but ending the day with a hug and kiss no matter what.

And there I was, hands in the warm water, day almost done ... and I realized that I am capable of that dream. In fact, I am doing it right now. If not for Duchenne, I would have gone on to more children and a more homemade life. And I realized for the first time that I really could have succeeded if that had been my path. That life is still in me, even though I have largely turned away from it. And even more importantly, I realize that I did choose to turn aside. Now, I'm not saying that I chose to have a child with Duchenne, though my version of Fate allows for the possibility. But when we got Rain's diagnosis, Scott and I did a lot of soul searching and made some clear and irrevocable choices. We chose not to have any more children. We chose to pursue a therapy-intensive lifestyle at the expense of the laidback one we could still have chosen, with different consequences, instead. We've made our decisions for the best and we've stuck with them for a long time now. And I think I'm easing into a sense of peace about that.

I lost a lot when I lost myself to "Holland." But I've gained in unexpected ways as well. It was good to have some time to remember that, despite my total transformation post-diagnosis, I'm really still me deep down. I function on a different level in my daily life but I do still have recognizable values, virtues and abilities from Before. There is a lot that can't and shouldn't be retrieved but there is also plenty that can be resuscitated, redirected, reimagined and worked in. Particularly since my grief had led me to think that I had lost everything, it's Good to Know that I haven't.

Good News and Less Good News

2010-03-11T19:01:00.003-07:00

The good news is great! Paul has not been diagnosed with CLL or any other kind of cancer. Yay!

The bad news is that he hasn't been diagnosed at all. He is waiting on test results which will show (we assume) what he does have.

Of course, no one has ever accused me of having good sense, prudence, patience or judgement. Luckily, I have a good example to follow in my brother-(not)in-law. If and when Paul informs me of a definitive diagnosis, I'll let you know too. I apologize for carrying any of you along with me in my total freak out panic attack. I can't say I'm feeling relaxed about it all at this point, but Paul and Laura seem greatly relieved. Let's just hope for the best.

Love that whole Year of the Tiger thing, don'tcha? I'm done now.

Another Reason Why I Love My Sister

2010-03-11T11:35:00.002-07:00

My children have very specific musical tastes. They want that "baba music" and "louder please" so they can carseat dance to Dancing Queen and Waterloo.

Here's a link to something even more wonderful than Abba. Aunt Susie, the kids ask for you every day. http://lepusdomesticus.livejournal.com/

I've got crocus greens popping up all stripey in the garden. I see two inches of daffodil leaves. The tulip shoots are as curly as can be, spiraling up out of the cold earth. The trees are blooming with little fuzzy red pollen bombs. I've been knitting in the sunny spot while the kids get muddy and make chalk drawings all over the path. I've even been tempted to pick the two little dandelions' leaves for my salad but I'm still letting them get a bit bigger yet.

Existential Angst

2010-03-08T08:57:00.004-07:00

Ah, my favorite emotional state. The worst part about the angsty depression of the 11 o'clock over the dishes kind is its existential quality. There is nothing that you can do and it is emphatically not going to be ok. It's not alright and telling me that it all will be is just plain wrong.

It is totally unacceptable that people I love are sick. It is totally unacceptable that medicine is utterly inadequate. It is totally unacceptable that there is suffering and pain in the world. It is unacceptable that there really isn't anything I can do to help. And it is Totally Unacceptable, but true, that Things Will Get Worse, Much Worse. And I will live to see it and continue to survive even as the people and world I love slip inexorably away. Period.

Indeed, there is simultaneously beauty and joy and love and gratitude and hope in the world. But when I am overwhelmed with a sense of overpowering Doom! this awareness only creates unbearable poignancy.

Thus, since all my evasive actions against the dictates of Fate are utterly useless-- and since my duty/destiny dharma seems fixed-- all I can do is attempt to cope better with the overpowering urge to despair.

(Duty + Destiny)Dharma / Despair = Extistential Angst - Coping Mechanism Effectiveness Quotient B

So, Self Medication.
* Wish Garden "Emotional Rescue" herbal tincture, 3x daily
* Rescue Remedy, frequently (better take it again now)
* Grandma's chocolate sauce, with or without ice cream, prescribed by health care guru known as My Mommy
* Malbec, one glass with dinner
* Coffee with lots and lots of super creamy, fresh spring raw local cow milk, 2x daily
* Bee pollen, 1/2 tsp daily
* Craft planning-- big stuff, some new, some tried and true
- painting outdoor bench a rich, warm royal blue with trompe l'oeil (ha ha) florals
- painting indoor mural on kids' room wall
- new knitting skills with hats. Started a fun one for Hazel last night, in pink.
- sewing plans. Machine getting a tune up today after 5 years in a box.
* Garden plans. There's one last space without perennials ...
* Cooking, cleaning, tidying and laundry. I gripe, but the simple tasks that can be done help.
* Reading. I'm going on one about crafting, one about food that Scott and I are reading aloud and I've even started a totally brand new (to me) novel from a famous prizewinner.
* Hankies. Can't overestimate the importance of hankies.

Spring is coming. I've got good resources. I'm over the most recent shock enough to stop flailing. I'm aware that it's not just me. We're all doomed! It's called "normal life."

Oh, %^*&!

2010-03-04T11:23:00.001-07:00

I think I'm panicking.

Blood is Thicker

2010-03-03T14:55:00.003-07:00

Blood is thicker than water. And we stick by the people we love, no matter what, regardless of whether they are technically considered legal "family" or what.

My brother-(not)in-law, Paul, has just been told that he has cancer. Chronic Lymphocytic Leukemia.

Our official extended family approach is Do Not Panic. We'll have more information over the next few weeks regarding prognosis, treatment approach, side effects and such. Also to be discussed will be insurance, employment, mortgage plan and The Extended Family Financial Plan. Because it's never just one thing in isolation, is it? Remember, Laura, our official family approach is Do Not Panic. Just repeat "Do Not Panic."

Fatalism

2010-02-25T15:32:00.004-07:00

It's not about escaping, evading or changing your destiny. It's about Continuing On. It's about facing up to your fate. It's about confronting and accomplishing and fulfilling your destiny, no matter how horrible, with panache, with grace, with courage and with style. Not comforting at all, is it? Yet, for some reason, it keeps me going.

With so much tough news lately, there isn't any point in recounting it all. But some of the biggies stand out.

A friend's diagnosis of invasive breast cancer. Another friend's business on the brink of failure, putting at risk not merely her livelihood, but also her home and her daughter's education. A friend with a broken finger, her husband with a broken ankle, her sister with a broken leg all at the same time. A delay in the house plans. An illness in the family. A child recovering from surgery. A house worth next to nothing and a car worth less.

Ok, the bright side. Because there is always a bright side.

A brave friend, facing her cancer diagnosis admirably. If diet can do it, if the love of friends and family can do it, if medicines and herbs and effort can do it, she'll kick the cancer and live to laugh about it. I have faith in you.

A dear friend, facing this economy with a laugh. Remembering that it isn't personal, that a kind word is worth more than a dollar, that creativity has its own rewards. You are a survivor. And I've got a lasagne with your name on it.

A loving friend, facing pain with a shrug. Reminding me that all pain is temporary whereas love is eternal. I am grateful for you.

A delay in the plans is nothing. I am so proud of my husband for the great work he has done, is doing and will do to provide a wonderful home for our family. We can be patient.

It's just a cough. A little tea, a little rest and spring will be on it's way before we know it.

The bravest little boy I've ever known may not actually scoff at surgery, being really too young for such an attitude. But he's doing great. I'll give you the crackers you've been longing for next week, I promise.

The roof doesn't leak, the heat works and so does the water. It's good enough for now. And the darn Toyota hasn't exploded yet, so I guess we're all good.

I took a shower and got dressed in nice clothes today. I put on earrings. I have kissed and hugged my family and I'm going to do it again. The snow is melting, the birds are busy. Children are playing and laughing.

It's such a funny life we're living. It's so easy to get lost in the dark; so hard to crawl out into the sunshine. But the sun is shining, bright and warm, even when it's behind the clouds. Even when it's nighttime here, the sun is merely hidden, not gone.

Post-Op

2010-02-21T13:56:00.002-07:00

The weather was truly horrid when we drove down to Denver at 4am, but somehow Scott managed to get us there safely. Rain was a perfect angel, cooperative and patient during every part of his hospital stay. He bravely faced the IV, the surgery went as smoothly as could be and when we got to the recovery room, Rain drank as much apple juice as he could hold without a complaint. By the end of our two day, one night stay, Rain didn't want to go back home. He loved the nurses and the endless mac n cheese and the wagons and the playroom. Scott managed to get us through another harrowing bad weather drive and we arrived home. Home to a very happy to see us but very sick little Hazel. She and her Aunt Susie did great, but Hazel's cold is a whopper. Scott's back in bed too, never having really recovered from the cold that's dogged him for two weeks.

Now it's just the challenge of getting through the next couple of weeks. Rain refuses every food that is remotely cold or soft or warm. He wants apple juice. Bananas and scrambled eggs are ok, but don't you dare threaten him with chicken soup and dumplings! All those popsicles we made are for Hazel, which really isn't bad at all since she needs them with her cold. Rain would touch ice cream or a smoothie if you threatened him. Luckily we have plenty of eggs and bananas and apple juice. We're just out of tissues and flour and milk ... with 6-8 inches of snow on the ground.

I think it's a movie night. And pancakes for supper. Er, make that buckwheat pancakes. And pumpkin pie.

Dream a Little Dream of Me

2010-02-18T11:19:00.004-07:00

Tonight, as you are sleeping peacefully, dream a little dream of Rain. We'll be oh so gently waking him up at 3:45am to leave the house at 4am. The snow will be falling gently, just enough to make it pretty. The whole world will be still. Wrapped in a warm blanket, with his favorite dolly and the sweetest lullaby music, we will travel down to Children's Hospital. We'll check in at 5:30am. Rain will get his "special pajamas" on and a nice doctor will help him to "go back to sleep." At 7:30am he'll be on the table. Tonsils and adenoids out, and then, by 8am, he'll just "magically wake up" and it'll all be over. Then we stay at minimum 23 hours in the PICU, with lots of new toys and books to keep us occupied. Hazel and her Auntie Susie will be at home, having a special visit together. By Sunday, we should all be back home, eating popsicles under the blankets of our very own beds.

And I Quote

2010-02-05T16:42:00.002-07:00

Here is what it says on Rain's "Prior Notice of Special Education Action" sheet from his IEP meeting today:

"Rain does not demonstrate a disability as defined by the State of Colorado that is significantly impacting his ability to access and learn in an educational setting."

You can bet I'll be mentioning this sentence when I meet with my legislators later this month for our FACES advocacy campaign!

We've Been Busy (duh!)

2010-02-04T07:52:00.002-07:00

I want to spend hours and hours writing on here and telling you all about the great stuff my family has been up to-- working on the house plans, going to doctors, meeting with PPMD folks, meeting with Children's Hospital folks, meeting with FACES folks, learning the glockenspiel, visiting Kindergarten, doing art .... But this is what I have time for.

Hey! I Do See a Bird in your Ear

2010-01-25T19:54:00.004-07:00

A composite view of our family's day today--

Category: Not Recommended
12am Go to bed
5am Get out of bed
6:30am - 8:30am Drive through heavy rush hour traffic with a toddler in the back seat
1:45pm Discover that an important package went missing nearly a month ago. Fight United States Post Office.
2pm-2:45pm Attempt to nap by fighting with two totally unwilling, wiggly, exhausted children and one exhausted but caffeinated parent in one bed.
2pm Fail first Algebra quiz in 22 years
3:45pm Major tantrum by one out of two "responsible adults"
7:30pm Discuss surgery with at least one overnight stay in the hospital for tiny, innocent child (with dimples).
Bedtime reading: "Preparing for Your Visit-- Surgery" from The Children's Hospital!

Category: Recommended

8:30am-9:30am Productive and reassuring meeting with Doctor. Great bedside manner-- all business w/ the adult, all play with the toddler.

9am-12:30pm Run all the errands with Dear Friend; have lots of good conversation. Receive offers of future babysitting.
5pm Dinner at the Taqueria los Comales with long lost but beloved Relations

Bonus Question:
So, you're wondering, what exactly does an Associate Professor of Otolaryngology, Diplomate of the American Board of Otolaryngology, Co-director of the Cleft Palate Clinic, MD, FACS, FAAP at Children's Hospital do? According to Rain, he looks deep in your ear with a light, while whistling bird calls, and tells you that you've got a butterfly in there. Rain told me that he also enjoyed the light shining in his mouth and saying "ahhh".

Brief Update

2010-01-21T20:36:00.003-07:00

Too Busy to Think! Too busy to write! Too too Busy!!

Last week's Audiology report--

Failed the hearing test. Fluid in the ears and can't "pop" one. Probably due to Humongous Tonsils.

Yesterday's visit w/ Dr. B the pediatrician--
Vaccines! It's now or never with steroids coming. Danger Will Robinson!
Scoliosis! A bit of a curve between the shoulder blades.
BMI 75%
Height/Weight 25%
Fluid in the ears?
Recheck with the pulmonologist due.
Call our psychologist as another member of the DMD team.
Get Those Tonsils Out Now!

Today's Chiropractor visit--
Spine looks pretty ok, but can see where curves may be starting to form, upper and lower back. Come back once a week for a month and then we'll see....

Tomorrow--
The IEP/IFSP full developmental assessment.

Bring a huge stack of documents.

Then there's the House. Scott's just handed the plans for the structural engineer's stamp. Then we pull permit and break ground.

Got that FACES program up and running w/ a meeting and an event ... Next Weekend@! I've already handed out half my business cards.

The freezer is empty. The laundry basket is overflowing. We are looking to hire a babysitter and an errand runner. Mama's going to have another cup of coffee while she runs out the door.

One More Minute

2010-01-15T15:12:00.002-07:00

There is a free contest going on facebook right now. From today through 1/22/10, every person in the world has a chance to help PPMD and/or Darius Goes West to win $1million. It only takes a minute of your time each day for a week to cast your vote. If either PPMD or DGW wins the money, we will be $1million closer to a cure.

This is such a crucial moment in the life of Duchenne, with really effective treatment potential in human trials right now. We have come so far. There is hope that we really can End Duchenne. There is still hope that we can do it in time for Rain. Please take a minute to vote.

http://apps.facebook.com/chasecommunitygiving/charities/301212?src=comment

Rain's New Skill

2010-01-11T19:22:00.003-07:00

With a little carpentry from Papa, Rain is now able to get into and out of his bed alone. As much as I like to sleep in (til 7!), I am really looking forward to the dark morning when Rain pops up right next to my ear at 5:45 and squeaks "Hi, Mama!"

Birthday

2010-01-05T19:52:00.002-07:00

Under a Bright Star

2009-12-25T11:20:00.004-07:00

In a time long ago that is also not long ago, in a place that is far away but also not far away, an Angel descended to the earth. After a long night of labor under the winter stars, In the bright sunlight of a new day, A Baby was Born. She was beautiful and holy in every way; an Angel of Joy, blessing the whole world with a message of pure Love. Today, Hazel is Five.

A Christmas Wish

2009-12-24T12:14:00.003-07:00

My sister just wrote this poem. I hope it moves you as much as it does me.

The Entrance Into Heaven

God is both female and male
and God is neither female nor male.

It was in a dark night of winter—
the moon held up golden horns in the West,
the shifting clouds rocked in waves beneath it,
the stars were scattered blooms in the sky—
when God created the Woman and the Man.
It was just like that, these two people
were not and then they were,
for that is the way of God:
foals are born before the dawn,
blossoms open and turn to fruit,
new leaves broaden into maturity
between the first and second rays of the sun.
These two people, Woman and Man, Man and Woman,
were as innocent as the earth:
they knew nothing of life or living,
and they knew not each other.

For a long, long time, they lived in darkness,
in the holy night of winter,
as babies live within Mother’s womb,
as the dead return to Mother Planet.
When the sun rose on these two people,
sitting back to back in the world,
they did not look or know each other,
did not recognize that they were one kind.
Man and Woman dug in the dirt,
they chewed on dry grasses,
they did not see the world or the sky.
But like the plants sprouting in the morning,
at the second ray of the sun, they faced each other.
And in that moment, God in God’s Wonder
smiled all around them, and gave them
Original Blessing.
And Woman and Man saw each other.
They blinked their bright eyes and they smiled on each other,
for the Original Blessing of God’s Wonder
was the knowledge and desire of Love.

These two people learned a language
so they could speak to each other’s hearts;
these two people walked the world
and with their eyes showed the world to each other;
these two people ate the fruits of their Mother
and felt that they were alive in a paradise;
these two people made love to each other
kissing earth and sky, embracing branch and vine,
encircling river and pebble, mingling water and wood.
And in her sex he saw the blooming of the flower
and in his sex she saw the growing of the stem
and all around them the world was a garden
and all around them the world was a wilderness
and all around them bright colors of life opened
and all around them it was their first spring.
And the Man brought the Woman fish from the sea
and the Woman brought the Man roots from the earth
and the Man brought the Woman fruits from the sky
and the Woman brought the Man soup from the fire.

Then these two people brought forth children
and gave them all their boundless love,
for that is God’s Wonder of Love,
that is the meaning of Original Blessing.
Love is fertile as the Planet, Love is everliving as All Life;
the more it is that Love is given,
the more there is of Love to give.
And the children of these two people
were of every kind and persuasion of people;
and the children of Woman and Man
embodied among them every aspect of God;
and the children of Man and Woman
bore all the Blessing of Original Love.
After that, all the people had to make their way in the world,
had to leave the Original Birthplace,
had to spread their love all over,
had to love all life on this planet,
and in their wandering and their discoveries,
their exploration of God’s Wonder,
they found the entrance into heaven—
for heaven is love, and it lives in your heart.

Merry Yule

2009-12-20T22:13:00.005-07:00

A Christmas Card to you:

Dear Family and Friends,
This year has been one of settling in to our "new lives" in the post-Duchenne-diagnosis era. We are grateful to report that there have been no cataclysmic upheavals, merely a lot of subtle shifting. Such a nice change from the past few years!

Rain is now two and a half. He is an intelligent, cheerful, sensitive and hard-working little boy. Rain enjoys his music class, just for fun, and loves to sing, play and dance to music of all kinds. His continued therapy regime has been honed and polished into a supportive and effective three therapies per week. Rain works hard on physical therapy with Angie at our house, standing, cruising, transitioning. He enjoys his time in the pool with Stacy, walking freely, immersed in the supportive water. And Rain has always loved his massage time with Heather, soothing, stretching and gentling his growing muscles. Rain is still in the building-up phase of early Duchenne and we have high hopes that he will continue to gain in strength, endurance and mobility for a while.

Hazel is about to turn five and has grown amazingly in the past year. Her biggest accomplishment has been in verbal communication. At the beginning of the year, she was diagnosed with serious speech delays. We began an intense bout of speech therapy twice a week, both privately and in a public school group. Hazel worked and struggled with the "s" sound for weeks ... and then surprised and thrilled us all by not only getting "s" but also catching up to every other sound she had lacked. She graduated from speech therapy in June, a clearly intelligible mistress of the English language! Hazel has blossomed in every way, enjoying her Waldorf preschool and beginning a Kindermusic class. Hazel is a refreshing source of joy and wonder as she helps and learns and busies herself about the house and the larger world.

Scott has jumped into the deep end of the architecture pool with his first major project. He has designed a new, fully handicap accessible, sustainable home for our family. Working as the lead architect on the project, Scott is getting a chance to work with some of the top engineers, architects, planners and builders in the area. We hope that by this time next year, we will be writing from our new address ... and Scott will be designing other great projects in his new career.

Ivy has also been stretching herself in the world of careers and callings, working closely with the Parent Project Muscular Dystrophy (PPMD) on a variety of projects. You can find out more about this wonderful charity on their website http://www.parentprojectmd.org./ or by phone 800-714-5437. Ivy is now a coordinator for PPMD’s Colorado and Wyoming FACES outreach program, serving as a mentor and facilitator for other families living with Duchenne. Together with the rest of the family, she attended PPMD’s annual conference (accompanied by a delightful, epic road trip) and raised funds during September’s Coach to Cure event. Ivy spent time lobbying to raise awareness for Duchenne, meeting with Representative Betsy Markey and Senator Max Baucus. She continues to update her blog, http://www.mysonmyrainweatherreport.blogspot.com/ and to play with various crafts and handwork projects.
Much love to all of you from all of us!
Ivy, Scott, Hazel and Rain

Zoom

2009-12-17T15:38:00.002-07:00

What a walking week for Rain! First a few steps between Mama and Papa. Then a walker (which had been on order for months) arrives and Rain can go as far as he wants to. Today, he has pulled to stand at the walker, transfered in and out at will and ... walked completely independently, no helps at all, across the room. Wow. Zero to zoom in one week.

Farther

2009-12-15T19:59:00.005-07:00

Today was the first day with our new family member, Walker. He's a lovely blue Gator. He barely fits in the house. But he's awesome outside. I feel like we've gone from having an eight month old baby to a two and a half year old in a couple of hours. Rain's very first action with Walker was to dash out into the parking lot, in the opposite direction from the car, giggling maniacally all the way. Our little boy is ecstatically happy to do it "all by myself." Repeatedly, in this one evening, he has demanded "Walker please." Well, you asked for it, kiddo. Here we go!

RAIN WALKS!

2009-12-14T11:28:00.002-07:00

RAIN CAN WALK! RAIN WALKS!! RAIN CAN W.A.L.K!!! Rain can walk. Rain walks. Rain Can Walk! Laughing all the way.

This is no longer a lurch and stumble to Mama (which came earlier this week). This is 3-4 steps from person to person. Rain even walked from me to Angie today (a big deal when it's all about trusting the person who will catch you at the end). Next we'll be working on person to object walks and object-person (like from me to the chair and back). Then it'll be object-object and he's off!

Rain pulls to stand. Rain stands here. Rain stands there. My little Rain stands Everywhere! He can even climb down from off of that chair.

"All by Self." Independently. Alone. All by himself. It's official. My son is a big boy now who can do things all by himself.

Snowball Effect!

2009-12-09T14:50:00.003-07:00

Here is an email from PPMD. Hooray for snowballing generosity!

Dear [PPMD community],
Amazing news! Just a few days ago, I sent out the email below, and the response has been tremendous. In fact, the challenge match has now been quadrupled!
First, Rick and Lelia Ginder came forward: “Anytime we hear of things like this, we want to jump on board and capitalize on the opportunity to raise much-needed funds. Lelia and I are honored to add $30,000 to this incredible matching opportunity Rain’s grandparents put out there.”
Just a short while later, we heard from Marty Karlin: “On behalf of our organization, Rally for Ryan, named for our son, Geri and I would like to offer an additional $15,000 to the match amount. We hope this helps others know that their donation will make an even bigger impact.”
This is enormous, unexpected, and welcome. And we really need everyone to rise to the challenge. If we can raise $60,000 from the rest of you, we’re looking at a total of $120,000, an unprecedented goal for our end-of-year fundraising. Together we can show that we’re an unstoppable force that will end Duchenne.Thanks, everyone!Pat ------------------------------------------------------------------------------------------------------

Dear [PPMD community],
For those of us in the Duchenne community, the holidays are both a celebration and a challenge. I miss my sons every day, but never more than I do at this time of year. I miss the silliness, the stories, the laughter, but most of all I miss their smiles.Although we still have so far to go, our sons are living longer, more independent lives now than ever before. And that's worth celebrating.We have another reason to celebrate this year. Ralph and Louise Haberfeld, whose grandson Rain was diagnosed with Duchenne last year, are offering a challenge to all of you. If we can raise $15,000 online from our community by December 31, they will match it with $15,000 of their own.This is a terrific opportunity to stretch your donation even further. If you give $50, it can become $100; $100 can become $200. Your generous online donation today will make an even bigger impact in the lives of boys with Duchenne. But we need you to help us reach that first $15,000. Join Ralph, Louise, and me by doing everything you can. We are blessed to have such an amazing community. Always remember this: you are a powerful force in our fight to end Duchenne. Thank you, and we wish you a healthy and happy holiday season.

Sincerely,
Pat FurlongFounding President & CEOParent Project Muscular Dystrophy P.S. Always remember: give from the heart; hold on tight to those you love; hope for a cure; and fight to end Duchenne.
Our Mission: To improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, education, advocacy and compassion.
© Parent Project Muscular Dystrophy 2009 — All Rights Reserved. 158 Linwood Plaza, Suite 220 Fort Lee, NJ 07024Forward to a Friend. Was this e-mail forwarded to you? Subscribe today.

Homage

2009-12-07T20:30:00.011-07:00

Grandma Cay's Butternut Snowballs. Mmmmhmmm.

New Housing Starts Increase by One

2009-12-02T21:40:00.002-07:00

A great kickoff meeting with the builders today. Scott has marshalled a team of great, intelligent men and stylish, down-to-earth women to get this project rolling. Plans are due in by January 1, groundbreaking sometime mid-February. An ETA of July!! (Now mentally add 3-6 months and 30% to budget and be amazed when it's done so quickly, economically and well!)

Twinkle Lights

2009-12-01T20:52:00.001-07:00

So, what have we been up to?

Here is Hazel "thinger" knitting. She really does have dexterity and concentration. So proud of her newfound skills.

The crocheted hat that just won't be small enough for a certain little girl. I guess that means it's mine. Good thing I have a great idea for making one that will fit her. And, of course, the ever-present bowls of popcorn and cranberries for Yule tree garlands. Hazel likes to make them herself. You'll recognize hers by the *amazing* number of cranberries. Rain likes to sit on my lap and alternate handing me the popcorn and having a little nibble for himself.

The seasonal job Scott votes most likely to require a beer to recover from. But the lights always look so pretty!

Peanut butter and birdseed pinecones. Notice the intense concentration ... and the amount of peanut butter on Rain's face. Not really sure how much birdseed he actually ate but the peanut butter was delicious aparently.

A quick bike ride over to the land to give some love to the creatures there. There's nothing like a food decorated Yule tree outside. Now for that snow drifting down all over.Happy holidays to you and all your squirrely friends!

Back in the Saddle Again

2009-11-28T15:12:00.000-07:00

I'm feeling much better. Weaning myself off the hateful diet ... or maybe crashing it by what I've tasted today. More info to follow with Dr. appointment in two weeks. Until then--

Bracing myself for the chaos that is the first three weeks of December. It's the fun kind but still.

And the kid update:

Rain is awesome. I mean it. I am in Awe. He is gaining in strength, endurance and confidence with amazing speed. He crawls up the stairs alone. He pushes to stand at a special step stool we've got set up for him. He cruises everywhere. He WALKS between Hazel and me, holding onto our hands. He WALKS in the grocery store using a kid-sized cart for balance. And he wants to walk MORE!

Hazel is awesome too. She is helpful, thoughtful, loving, imaginative and ... Almost Five!

Ok, back to my crafting. I have so much to make before Yule!

Visual Cues

2009-11-23T13:10:00.001-07:00

I have been rather seriously ill the past couple of weeks, so I am not thinking clearly at all. I hope to have test results about my thyroid back this afternoon. If it's just my dose needing to be raised (a lot!), then I'm fine with that. Otherwise, we'll have to dig deeper. Some of my symptoms are helped by my current hateful high protein, low carb, no-grains, no-nightshades diet. But here is what I do remember about the past few weeks:

Little Red Engine that Can

2009-10-31T21:38:00.001-06:00

Here are my firemen. Please notice the red fire engine conveniently held by Papa prior to its work as a trick or treating machine. Definitely not a baby anymore at 2 1/2. Hazel, who is sick, wisely declined to be photographed. Her firewoman suit will have to wait.

Halloween

2009-10-31T15:57:00.001-06:00

Thinking about ancestors on this day. I am grateful for all that you have given me. I am grateful for all that I have passed down to my children. Blessed Be.

The "Or What" Category

2009-10-15T20:42:00.000-06:00

Some things I feel positive about in random, nearly- stream of consciousness order:

Hazel is beginning to "know the words". She sings songs that have a clear melody (close enough to the original) and all the right words (mostly in the right order). This is a big relief on a developmental milestone I had mildly fretted over for nearly two years.

Rain is willing to do his stretches without a tantrum twice a day. He calls them "Twinkle twinkles" because he likes it when I sing that to him while we stretch.

Tonight Rain asked for "hamBONEs" with "wishywashywees" and "ta tas". This means Papa playing the trombone while Rain does sandblocks and drums and Hazel plays the claves (ta ta teetee ta).

I have great big crafting plans. I want to make angels. I have the ideas all set up. I have the materials all laid out on my great big beautiful fantasy table in my mind. I'm almost ready to start.

Hazel sewed a beanbag "all by herself"! I helped but she really did a fine job on the stitching, a lot of which she really did do all by herself. She really likes to sew. I have big plans for a sew-related birthday present coming up. I just need to discuss it with Grandma and Aunties. I liked the story I told Hazel about the needle being a cat with a long thread tail. And how kitty moves makes the different stitches ... until kitty goes nuts with her tail and chases it around and under twice until she's all in a knot.

We had a lovely family dinner with a friend and some new friends met yesterday. And we got the family pictures done. My blonde haired, brown eyed children do look striking in chocolate brown, if I say so myself.

I am so looking forward to going to Grandma and Grandpa's house on Saturday. I think I'm even excited about the 8 hour car ride. I'd better provide some really spiffy snacks for the little ones though. And maybe an art project?? When we get there I am going sit down in front of the fire and toast my toes with knitting on my lap. Oh yeah.

Scott's feeling better and has worked hard on the house plans every day. We are going to make it. We really are. It'll be nice to have a real date while the relatives look after the babies.

I like timers for my ghostie lights. It makes me feel the good part of Halloweeny without the effort.

I like that we've come to a decision about where to send the kids to school. It's a great little public school with an excellent, fully integrated program for kids with various disabilities. I won't have to be an aide because Rain will have a really good one provided for him. Hoorah.

I found a suitable, available and free venue for my friend's party. That's a big relief. And I'm a little relieved to know that I will never try to reserve the "Common" House again. I just don't need to go there.

I like how Hazel wants to tell me a few choice things she particularly enjoyed about her day each night when I cuddle her. Tonight's was about how she loves her teachers and the other kids at her delightful little Waldorf preschool.

I like how Rain *always* asks me for a cuddle at bedtimes and how the other day at naptime (my favorite) he was about to poke me in the eye (as he likes to do for comfort, don't ask me why because I don't know), he stopped himself and said "No poke eye." Good boy!

I like how Scott is warming up the bed for me right now while he reads under the covers. I'll be there in a minute.

An Autumn Leaf

2009-10-13T11:19:00.000-06:00

After a long and deep talk with a good and wise friend, I'm starting to see something that needs my attention: my self. I've been having a multi-month tantrum over my neighbors (a convenient excuse). It is time to stop. I have become unpleasant and I want to change and do better. Some private journaling is in order and some more attention to/with/from/about my Angels. I will begin by deleting the entries in this blog that showcase that negativity. I am getting started on the hard work of transforming myself into the better and bigger person that I can feel starting to want to emerge in myself. I can be better than this.

Two Year Old Boy on Wheels

2009-09-28T20:28:00.000-06:00

Conversation with Rain this morning.

Mom- Guess who we get to play with today!
Rain- Angie! (That's Rain's PT).
Rain- Walker?
Mom- I don't think she's bringing a walker today, sweetheart.
Rain- Chair??
Mom- Wheelchair?
Rain- Wheelchair! Yes!! Dat Easy.

COACH TO CURE MD TODAY

2009-09-26T09:30:00.001-06:00

COACH TO CURE MD TODAY!

TEXT "CURE" TO 90999 AND DONATE $5 TO HELP FIND A MEDICINE FOR RAIN!

CLICK ON THIS WIDGET AND DONATE MORE!

Don't Forget Hazel!

2009-09-25T21:47:00.001-06:00

AND

Hazel learned how to ride her own big-kid two-wheel bike today. She was awesome. She laughed the whole time ... until she had a really major crash which required an ice pack and some arnica cream. But she declared that she wanted to keep on riding again tomorrow, with a little help from Mama to get her started.

Yes, But Today You Look It

2009-09-25T12:54:00.000-06:00

Here's Rain trying out some Devices.

This is the moment when Rain first began to realize what this horrible walker-thing could do.

And you see in this one that Rain has gotten across the room and seems to like it. This model is the Gator and it is what we plan to get for him.

Here's Rain zooming around in the Quickie that he tried once before, last week. He very much enjoyed pushing the door-opener and pretending to roll away.

And here's Rain's reaction to his first ever try of a wheelchair. Can you see the joy beaming out all over his face? He was laughing with pleasure at how easy it was to move himself anywhere he wanted to go.

Just So I've Got It on Here

2009-09-24T11:51:00.001-06:00

Since I go back and reread these things from time to time, this one is to help me remember.

I have Real Friends who actually Love Me.
I have no obligation to stay in an abusive relationship with anyone, even if I have to see their house everyday.
I am modeling good choices to my children.
Hazel has shown that she has noticed by kindly including and comforting a friend who was being excluded when another friend wanted to "play mean". Good job, kiddo!

Rain Crawls!

2009-09-20T20:03:00.000-06:00

Rain crawls! For real. He was in his bed. Stuck his bottom up in the air, then worked up the arms to get into all fours. Then a hand moved. And knees shuffled. And another hand moved. And the knees shuffled. Go, kid, go!

Vote on Facebook Right Now!

2009-09-12T15:08:00.001-06:00

ACTION ALERT FROM PPMD

Talk about the power of the people! You voted and PPMD has made it to the third and final round of the Facebook Vote For A Cause contest! Only 8 organizations out of over 500 that started, remain. The grand prize winner will receive $50,000 in co-branded advertising with Intel, as Sponsors of Tomorrow™.
We know it's the weekend but our competition is tough, with some large, well-known organizations seeking this incredible reward. But like we said before, we have something the other groups don't have...YOU!
Facebook allows you to vote once a day, everyday until September 20. So vote and then forward this email to your friends and get them to vote. And continue to post the voting information on your Facebook page...because it's working!
Facebook is the largest online community in the world, and we are well on our way to become one of their most influential nonprofit organizations!
Thanks again for your continued participation. We'll keep you posted on the results!

Our Mission: To improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, education, advocacy and compassion.
© Parent Project Muscular Dystrophy 2008 — All Rights Reserved. 158 Linwood Plaza, Suite 220 Fort Lee, NJ 07024 Help us end Duchenne. Donate today. Forward to a friend. Was this e-mail forwarded to you? Subscribe today. Unsubscribe

I Want My MTV!

2009-09-09T20:05:00.001-06:00

DARIUS FINALLY MAKES IT ONTO MTV FOR HIS 20TH BIRTHDAY!!

Here's the scoop from Charley's Fund:

DGW update: National TV PremiereStock up on popcorn for the pantry and a whole bunch of tissues for tears of sadness, joy and laughter! On Saturday, Sept 27 Darius Goes West will air on two MTV stations:MTVu -- broadcast on college campuses across America (time to be announced) MTV2 -- basic cable network at 12 noon estThis presents Darius with a combined audience of 80 million households!!! The television premiere of the best documentary ever comes on an extremely special day -- Darius' 20th birthday. Please let the entire world know...let's rock the ratings like we did with Nightline and Ellen!Attention early risers and TIVO users: CNN will feature Darius' story tomorrow (Thursday, Sept 10) sometime between 6-7am est. They'll run the story on Headline News (HLN) from 6:30-7 am and again from 1-1:30pm. Tune in for the latest on Darius' quest to end DMD!!!!

A Great Day

2009-08-31T19:48:00.001-06:00

First I woke up (as my dear brother always used to say). Scott helped a friend while I got the kids ready for school. We dropped Hazel off and I think she was the happiest kid in the whole world. Then Rain and I got home in plenty of time and chatted with a friend in the road for a while. When it was time for PT, Rain was ready. He worked really hard and did awesome, showing off his scoot-off-the-big-bed-and-all-the-way-down-the-stairs move as well as cruising for pumpkin pie. I got some work done as Rain napped and Scott got Hazel from school. Then a lovely afternoon of happy, charming Hazel playing with a neighbor girl we really like. Good homemade supper and an early, peaceful bedtime. Rain used his little bike-o to set the napkins on the table while Hazel did the silverware, plates and cups. After his job was complete, Rain kept riding bike-o around the crowded kitchen saying "'scuse me. sorry. 'scuse me. sorry." I even managed to lobby a Representative! What a good day.

And last night, for reasons known only to herself, Hazel decided that her doll, whose name had been simply "blue dolly," needed a proper name. Now his name is Juniper. Hazel is taking very good care of him.

My insecurities seem to have been unfounded after all. My kids are happy, polite and helpful. I'm in love with my husband. Even the cat is behaving well.

The Plan

2009-08-20T20:37:00.001-06:00

Here's the plan:

In the next 10 hours, I finish the laundry, pack the clothes, ignore the neighbors' really loud fight (they'll be fine), get the compost and the trash out, clean up the kitty throw-up, get the lunch for the road, pack the van and get on the road. Not necessarily in that order. Then I drive through Wyoming all day.

On Sunday I meet the Senator from Montana. The whole family will be dressed and pressed and at our cutest and best behaved. Then I say ... something ... and hand him/his staffer a packet of information. There's a bunch of good stuff from and about PPMD. And I've added a letter and some photos. Here's the final version:

Dear Senator Baucus,
My name is Ivy Scherbarth. I am a mother from Fort Collins, Colorado. I have contacted you through our mutual friends, Robin Farkas and Carl Knobloch, because I believe that you may be able to help me with a cause that is very near to my heart. I am trying to save the life of my son, Rain.

Rain has Duchenne Muscular Dystrophy (DMD). It is a severe and debilitating handicap, causing progressive and irreversible loss of muscle function. Most boys with Duchenne need a wheelchair full time by age 10. If they live to their mid-twenties, they are the extreme elders of the DMD community. There is currently neither a treatment nor a cure.
For boys with Duchenne, the continuous fight of their weakening muscles against gravity eventually becomes insurmountable. Therefore my knee-jerk response upon approaching you is to ask you to immediately repeal the law of gravity. However, I think that request may be beyond even the scope of a United States Senator ....

Actually, I would like to thank you for the support you have already given towards the fight to end Duchenne. You supported the MD Care Act, sponsored by Sens. Amy Klobuchar (D-Minnesota) and Johnny Isakson (R-Georgia), which passed unanimously in 2008. This law has done a great deal already to increase the chances of finding a treatment for DMD in my son’s lifetime.

I am requesting that you continue to bear us in mind as you work on our nation’s current healthcare reform push. It is very important that families facing catastrophic diagnoses like DMD have access to health resources that we desperately need. Children with Duchenne and other rare disorders really need to get to the clinicians who specialize in their particular disease. People with disabilities need to be able to get the particular assistive devices that enable them as individuals to be independent and contributing members of society. It is important that the FDA spends its time wisely, facilitating the emerging drugs that can help people win their fights against rare illnesses even if those groups are small and have little money or political cachet. Our bottom line is that we believe that Rain deserves a chance to grow up and pursue his own life. More support means a faster turnaround time on the medical research that can save Rain’s life.

My son is a bright and happy two-year-old. Rain loves music and books. He loves to swim and go camping. He loves fire trucks. Rain works hard with his team of physical therapists. A couple of months ago he learned to sit up independently for the first time, having worked diligently each day for a year and a half. We hope someday he will learn how to walk, even if his muscles can only carry him that way for a few years.

Thank you for all that you have already done on behalf of the 15,000 families in our country who live with DMD. Thank you for all that you will do in the future. My family and I are happy to assist in any way. Please contact us if we can help to explain anything about our family or answer your questions about Duchenne Muscular Dystrophy.
Sincerely,
Ivy Rebecca Scherbarth

And here are the pictures:

Senatorial

2009-08-19T13:42:00.001-06:00

What do you think of this one for leaving with the Senator? That's my boy!

Devices, Part I

2009-08-18T21:51:00.000-06:00

It was a pretty intense PT session today. Yes, Rain had a total and full-on tantrum, tensing every muscle in his body, particularly the screaming and kicking muscles .... But that wasn't it. He recovered quite quickly and worked hard on pulling to stand and cruising. He's going through a bit of a dip right now anyway-- asking for help with sitting and falling down a bit more. But I still feel that we're continuing an upward trend.

No, it was a tough PT session because we had our most serious discussion yet on Devices. We've ruled out the cool-sounding "anti-gravity" device for now. It is basically a structure on wheels which supports a harness. You can have more or less "gravity" by adjusting the supports. It would probably be great to counteract some of the deterioration down the road someday, but right now we don't want to do anything that could sap Rain's ability to increase in strength and endurance.

But what about a walker? I'm feeling pretty much all for it. But what kind? A gait trainer would offer more support, a reverse "granny style" would be more freeing. I like the idea of a reverse granny with a seat. Then he could go, without being strapped in, but he could rest whenever he needed to.

Ok, what about a wheelchair? He has tried them before and loved them ... they've just been the wrong size (or occupied by his ampa!). There are little ones that he could do, manual. That would still be a great work out for his arms, the only part of his body that never seems to get tired (of throwing things anyway). And I've got to say I can see some cuteness advantages here too. Can you just imagine my little 2 year old cherub zooming through the aisles at Vitamin Cottage?

I'm a little concerned about my motivations since I'm so close to the issue of Rain's mobility. As it is now, his only viable transport options are 1. butt scooting, which is becoming increasingly inefficient and frustrating, 2. Bob, our stroller-- great for wandering around downtown, impossible in our house, and 3. "uppies!", which as you can guess means me (or Papa) carrying him. The stairs are a whole other kettle of fish altogether. I have not yet been reduced to sitting on my butt with him on my lap, but the day is coming faster than I'd like to admit.

But I have other issues here. The cuteness factor. It's frivolous. But there's something sort of adorable about teeny little kids zipping around in wheelchairs. Ok, and there's the fact that if Rain had some kind of device, he would finally start to look handicapped. Then I could sort of feel like I was strutting around going, "See! I really wasn't kidding about the whole DMD thing."

And maybe I could feel like I didn't look so guilty using the handicapped parking spot. But I'm so getting over that one. I dropped Rain and all the glass bottles we were carrying trying to get him out of the car the other day so that I wouldn't have to leave him alone while I went all the way across the parking lot to get a cart to put him in. He was unhurt, the bottles survived and I had only minor bruising. But it was a wake up call. I really, really do not want to fall down and drop my child because I'm not strong enough to carry him.

So clearly I need to start an intensive body building regime tomorrow morning. Surely I could outpace his growth?? Yeah, in my copious spare time. Do you really see me as the body building type?

Coach to Cure or How I Became a Football Fan

2009-08-12T12:53:00.001-06:00

I never thought it would happen either, but I am becoming a football fan. Thank you so much to the president of the American Football Coaches Association! He has put this together for his nephew. I hope that we raise a ton of awareness as well as money we need so much for research. Thank you!

Snaps

2009-08-11T22:23:00.001-06:00

Now that it is officially official that I will be meeting with a US Senator in two weeks, I've been working on my leave-behind packet so that there is a small chance that he'll remember me and my family at a crucial moment. I'm also working on getting an appointment with my US Representative, so this will apply to her too.

Of course, you know that I usually take pictures like this:

Yes, that is Scott vacuuming Rain.

But this is a time to be really serious. So, up for your personal consideration are the following candidates:

That is Rain actually walking unassisted in the pool. Swimming and water therapies are very good for boys with Duchenne.

Thanks to the awesome firechief of Gibsland, Louisiana. My kids believe they've been deputized.

Enjoying Carlsbad Caverns, one of our nation's many wonderful, very handicapped accessible National Parks. This one's for you, Darius!

Rain and Hazel in the test garden of Santa Fe Nursery (aka High Country Gardens).

Kinda blurry, but you can't do cuter in my opinion.

At my cousin's house in March.

Rain's first experience of a mobility tool. He was so excited that he could go *fast* all by himself.

Rain loves music. That's him playing the harmonica.

At the park in March. You may notice the big sock covering up his cast from when he broke his left femur in February.

Ok, that's it for now. Let me know what you think. Oh, and I also mentioned in my letter to the Senator that my first priority is for an immediate repeal of the law of gravity so that it won't matter if Rain's muscles fall apart. Was that a good idea?

Rain Pulls to Stand and Cruises!

2009-07-31T18:59:00.000-06:00

One day it's same old same old and then the next ... abrafadabra (as Hazel likes to say)!

Rain just pulled to stand all by himself for the first time ever!!! I did help adjust his feet a smidge to get him started but he did all the work. And then he cruised the length of the bathtub, both ways! (Second time on that one. The first was yesterday.)

That boy is going places. Especially if those places have cute little penguin bath toys and running water. Go, Rain, go. See Rain go! Go, Rain, GO!

Golf

2009-07-15T21:46:00.001-06:00

Scott has decided to take up golf so that he can play in the Jumping Jack charity golf tournament next year. This picture, sadly tiny here, shows what Rain thinks of that.

"Weird. No matter how hard I try, I just can't seem to hear the ocean with these things."

Howwwoooooooooooooooooooooooo!

2009-07-14T22:00:00.000-06:00

(Editor's note: I realize that this post is extremely negative and angry, but I have kept it in because it describes thoughts and feelings that I am continuing to work through. I do not mean to imply a problem with institutions or religions, but a philosophical question on what/how to present different ideas on death and afterlives. Please excuse the tone, understanding that the underlying issues are important and worth grappling with.)

There aren't really all that many situations that make me feel like this:

But if you start to mess with my puppies, there are going to be Consequences.

Let's put it this way. While on our travels, we were lured into the territory of a different alpha pair. Their territory is in every way inferior to my pack's. My pack has no desire to infringe on them and their territory is quite far from mine. Normally, there is no reason for us to encounter each other. But we were doing our familial duty.

The bottom line is that I will not allow *Anyone* for *Any Reason* to mess with my pups. I love and adore my puppies and I will tear to shreds with my teeth anyone who tries to hurt them.

I have long tried to give them the benefit of the doubt but there is now no more doubt in my mind to benefit them. In their "church" I am an evil demon sent to test them. Rain's MD is my fault because I am an evil creature of "Satan" due to the fact that I am not a member of their "church." According to them I am going straight to "Hell" to be tortured eternally and I deserve that because I have not accepted "the Lord Jesus Christ" into my horribly twisted heart of stone. Rain will die because of my sins which caused him to get sick and he too will be tortured forever without stopping because he deserves it too. If only I could be severed from Scott and he would divorce me and he would, of course, get custody of Hazel, once he was no longer blinded by my demonic wiles, then he and Hazel could be "Saved" and everything would be lovely for them while they watch me and Rain be tortured in "Hell" forever. If I've exaggerated at all, let them stand up and contradict me.

They have completely written me and Rain off. They didn't even look at him. They refuse to even use my name. Scott seems to get sort of middling treatment.

But Hazel, my dear beautiful innocent girl, they watch with the kind of lust and hunger that suggests that they would cheerfully kidnap her at any moment if they only thought they could get away with it. They believe that she can be "saved" if they just have enough time with her. Luckily, that is easy to prevent.

But can you imagine what their attempts at "salvation" would do to my sweet sweet openhearted babe? What possible good could be served by introducing to her a fear of death? A fear of eternal separation from all her family? Because it would truly be all-- not one single member of her pack is a Christian of any sort. Not her beloved aunties and uncles. Not her worshipped grandparents. Not her own parents who remind her how much we love her at least 20 times a day. And not her darling brother, the apple of her eye, the subject of every waking moment whom she declares weekly that she will marry when she grows up.

I consider driving a wedge in these relationships child abuse. Particularly as regards Rain. Maybe if she were to believe that her dear family deserves eternal punishment for being non-Christian, maybe if she were twisted in such a way, there would still be time to mature and grow and come to repair the damage that would be done to her relationships with her family. But Rain doesn't have any time to waste on pointless hatred.

I absolutely vow to do everything in my power to protect my children from the kind of rift in their relationship, pre or post mortem, that a belief in hell and damnation would cause. I swear to protect my children from an unnatural fear of death. I absolutely excoriate and ban the belief that a disability is a curse from a malevalent deity or that it is ever in any way anyone's fault.

I believe that this world is reality. And that it is Good! I believe that Love is Good. I believe that Life is Good, no matter what form it takes. I believe in loving and caring for my children and keeping them safe, physically, emotionally and psychologically. I believe that if something feels good, it is good and that we can trust our senses and our universe.

They may be looking at Hazel as the daughter that they will never have. And I say, That's right. She is the daughter that they will NEVER HAVE. She is mine. She belongs to her own self and I am doing everything I can to help her to grow into her own sweet, wacky, loving, intelligent, brave Self.

No One will prevent her from growing in safety as long as I defend her. Oh, and you know the very best part of being a wolf family? Mamas are never defending their pups all alone. So if you want to try to hurt my child with your hate-filled beliefs, you'd better watch out for the rest of the pack. They're on the side of the alpha pair who bred those puppies and they're not afraid to do whatever it takes, despite the "Big Bad" label.

What a Long Strange Trip it's been

2009-07-14T21:34:00.000-06:00

We made it home. On the whole I'm calling it a good trip. There were a lot of great moments and we saw a lot of great stuff. It's just too bad that we had to organize our visiting by geography rather than personality. We ended badly what was started so well.

But here are some pictures of good times.

That's the kids dancing to a fantastic song by the Gypsy Kings-- the original version of "Hotel California."

And these two are from Cahokia, the most important archaeological site in North America. It's a Unesco World Heritage Site. You haven't heard of it? Check it out right now!

Rain in the Desert

2009-06-21T09:15:00.000-06:00

We woke up in Santa Fe to rain falling and mist on the mountains. The air was as sweet and clean as the desert can be.

We drove across the state to Brantley Lake State Park where we camped. It is such a weird feeling for a Coloradoan like me to be camping and hot at the same time. We slept in our regular summer pjs! We didn't even use the wool sweaters! And now I'm blogging from the campsite! Whoa. The modern world. But we're still feeling the morning desert breeze and watching the sun climb over rocks and scrubland with the Pecos river just visible down below. Cottonwoods are unbelievably green.

The jackrabbits have been busy having little bunnies all spring and now they are everywhere. Rain love to point out the "bunnines". We've seen roadrunners and spiders and lots of other small wildlife. Mockingbirds and something lovely with an orange breast that my parents and sister will be embarassed I don't already know.

Serendipitously, Dr. Hale of the Hale-Bopp comet of 1997, was here last night giving a talk on astronomy to the campers. We bicycled over to the lecture site (about a mile away) and listened to most of the talk. The kids won prizes in a raffle-- two little monoculars. They were thrilled and amazed. I was amazed. What a lucky thing.

Now it's off to the cave. I love being a family of happy campers.

On the Road

2009-06-19T13:59:00.000-06:00

The Whirlwind Tour Begins

2009-06-15T21:04:00.000-06:00

Our summer trip is starting out nicely. We're managing to stay out of the hail that keeps following us around but never quite getting to where we are at any given moment.

The Meadowfest campout was a success. An interesting time, a fun time, even a relaxing time ... at times. But I do love going up there to that spot and breathing in the clean mountain air. There's nothing like that ponderosa pine forest. My kids were great and we got to connect with some folks we've always enjoyed. Sweet.

Today's golf tournament was a completely different cultural experience. I've never done anything like that before. I should have remembered but we managed to go to the one place in Colorado where we could be conspicuous because we were wearing jeans. Hey! They were clean and didn't have any holes in them! And nice shirts and shoes! Oh well. The organizers of the tourney are, as we all knew already but it's always nice to have it confirmed, a lovely family. I'm looking forward to knowing them better. Got to meet some boys with DMD for the first time. Mixed feelings. There is a sense that Rain is on a different track ... but maybe that's just early diagnosis wishful thinking ... It's a world that we've just dipped our toes into.

We took the kids to the Butterfly Pavilion after the golf luncheon. That was magical. Watching their little faces light up when a butterfly lands on them. Hazel with butterflies on her fingers. Rain pointing out "fly!"

And now it is time for bed. There is so much work to be done over the next two days before we hit the road for good. Wish us butterflies!

Repent! or Eat Falafel! or Both!

2009-06-10T20:00:00.000-06:00

Just another side to my psyche (in case you wanted to know)--

This evening I enjoyed a lovely meal from our local Lebanese restaurant. My sense is that with all the angel images around the dining room, I'm gonna guess that our local Lebanese family is Christian. And as I stood around and showed the kids pictures of the blue Mediterranean and cedars covered with snow, I was so pleased and happy to be able to support a family of Christian Lebanese immigrants, who must have had many hard times and searches of soul but who have remained true to the beliefs handed down to them for nearly 2000 years. I am impressed by that kind of fortitude. I think that if I were from Lebanon, I would probably be a Christian too. And I could devote myself to it in a place like that .... The baba ganouche was especially delicious.

Headline News Updates

2009-06-04T13:27:00.000-06:00

* Our desktop computer has been virused into oblivion. Trend Micro has proven itself useless. We are calling in the Geek Squad for $300 to save the baby pictures and wipe the hard drive. Hopefully that'll do it.

* Luckily, Scott is letting me use his new laptop.

* RAIN CAN SIT! RAIN CAN SIT! AND HE CAN SIT AGAIN! Rain is no longer trapped on the floor. He can sit and lie back down on his own power. He is so proud of himself. Now, how do we get him to stay lying down at bedtime?

* We spent all of yesterday at TCH (The Children's Hospital in Denver). Rain and Hazel were extremely well behaved. Rain's EKG and echocardiogram are normal. His heart function looks good. He'll be checked every 2 years until he's 10 or there's a problem, then he'll move to every year. The doc said that Hazel doesn't need a check until she's 25-30. And I should be checked every 5 years. I asked for the research and they said that they'd sent it to me. I'll try to remember to ask again at the PPMD conference.

* Rain got his first pair of SmAFOs (orthotics). He did really well in PT with them today. They look like they do have a stabilizing effect on his standing and stepping. We'll see how they go long term.

* Pinwheels are fun but there is nothing better than a bike ride with the whole family. Particularly if it's muddy out. And mud spatters look great in long blond ponytails as long as there's a big shiny smile to go with them.

* We leave for our camping trip on Wednesday. Then a fancy golf tournament. Then a day at home for laundry ... Then it's onto the open road. Yay!

Computers Make Our Lives Easier

2009-05-27T21:06:00.000-06:00

Mmm hmmm. Yeah.
We've spent the last several days cleaning up computer viruses acquired through Facebook. Lovely. Scott lost a few hours worth of work on this computer and wasted precious days worth of work on the house. But we didn't lose the baby pictures. I am going to get them all printed out and stuff them in a shoebox in the basement where they'll be safe. Yeah.

So, Back to the Drawing Board.
We went and mapped out our house on the land and realized that we need to rework some key features, move walls and move the house on the site. But we are so glad that we know it now and not after they've dug a big hole ... or put on the roof. We'll get there.

Tomorrow's weather is looking more summery and I'm eager to get out into it. It's Hazel's last day of preschool for the summer and she is itching to get on her new bike. My baby has a two wheeler! I've been running along behind her for a few days as she giggles and crashes and goes for one second without me (twice!). I'm thinking she'll be zooming all over the place by September.

Rain is doing well in his therapies. His PT today had him walking around outside while holding on to my hands. He went really far! And he's been working very hard on sitting. I really think he's going to be able to do it soon. And then the independent two year old explosion. I would never want to hold him back but ... I guess it's just a good thing that my body really would appreciate a little more exercise in my life ...

Perfection

2009-05-18T22:04:00.001-06:00

Part 3: The Birthday Party

2009-05-18T21:58:00.000-06:00

Some pictures from Rain's birthday party, April 23, 2009.

Post 1, Arranged by Topic: DGW

2009-05-18T20:28:00.002-06:00

We hosted a moderately successful screening of DGW on Saturday. We had a rather exceptionally low turn out for our two screenings ... Thank you to those who did attend! ... But the event has sparked some very successful fundraising and awareness. Many friends and acquaintances contacted me to say that they would not be attending but they would like to buy a DVD to watch at home. Thus far we have raised nearly $300 (I consider that a lot).

Today I took a few of the copies of the DVD that I purchased and distributed them around town. I donated 2 to the library system (one for each branch). I donated one to our fantastic local video store, The Village Vidiot. The proprietor of the Vidiot was touched and seemed eager to see it himself-- He told me a brief story of his wife, who died of MS 10 years ago. It seems that when she was diagnosed with MS she was confused as well as distraught and wailed that she would end up on that Jerry Lewis telethon ... I would have liked to have met her. She had a sense of humor.

I also spoke with a very informative gentleman at our local art movie theater, The Lyric Cinema Cafe. He was also supportive of my showing the movie there and offered to get me in touch with some promotion companies they use.

So, a successful production all in all, despite the uneaten popcorn.

Another fun side note: one of the dollar bills that was donated is participating in Where's George? online. I wrote in a report thanking the giver and included the DGW web address for more info. I'm spreading the word any way I can, aparently. Go Darius!

Know About It

2009-05-01T14:38:00.000-06:00

I have lots to report about how Rain had a great birthday, Hazel is doing well and the whole family is making fantastic progress toward achieving our goals .... But this post is really just an announcement.

ANNOUNCEMENT

May 16, 2009

2:00pm and 7:00pm

Two Showings of Darius Goes West

at the Greyrock Common House

2265 Shooting Star Lane, Fort Collins, Colorado

Admission is free. Any proceeds from donations or merchandise purchases are tax deductible and go toward research for a cure or treatment of Duchenne Muscular Dystrophy.

Be there and tell your friends!

Fabulous Prizes!

2009-04-13T15:11:00.001-06:00

My sister is hosting a contest on her blog. The winner will receive a free DVD of a great movie, Darius Goes West. Sign up!

http://lepusdomesticus.livejournal.com/49660.html

First I woke up ...

2009-04-07T20:48:00.000-06:00

When we were kids, my dear brother used to always tell us the story of his day by starting with "Well, first I woke up ...."

Hazel had her IEP meeting today. She has an official, binding document now that officially labels her "disabled." Whoopee. She'll be starting with the public school system's speech therapy as soon as we can rearrange the rest of the family to fit in with the only time available for her.

And I just wanted to be sure to post it when it happens, since I am so often seeming to gripe about our co-housing community. Today was a perfect cohousing day. We had several very pleasant interactions with a variety of neighbors enjoying the lovely weather before it snows again on Thursday. See, there was a reason we moved here. It is a good idea. Sometimes.

Our Family Vacation

2009-04-06T20:41:00.000-06:00

We drove to Cleveland for Marc's funeral. Leaving town, we missed the really big snow storm by hours. Coming back home, we raced for two days to beat the big snow storm and made it by hours. A whirlwind trip for a sad occasion, but a good one nonetheless. It was good for us to be on the road and out of our daily stress. It was very good to connect with loved ones we don't see enough of.

The photo essay:

We went to the lake. Typically lovely weather.

We visited relatives.

And more relatives.

We ate exotic foods and were complimented by being asked "Are you Czech?"
We found some time to play.

We drove day ...

... and night.
But we made it home safely and had a really good trip. The kids were perfect angels from start to finish. Next time we'll do it in the summer.

Marc Scherbarth, RIP

2009-03-24T21:24:00.000-06:00

We got the news this morning that Scott's older brother, Marc, was in an accident yesterday. It seems that Marc was going down the stairs to the basement, carrying a load of laundry, just as he has countless times over the last 17 years that he lived in that house. He lost his footing and fell, smashing his head at the bottom. Since Marc was physically and mentally handicapped, he lived in a group home and his caretakers rushed to him almost immediately. But there was not much to be done. They rushed him to the hospital and got him on life support but his brain was seriously injured and bleeding. When the doctors gave the news to Tom, Marc's father, he went ahead and told them to let Marc go. Right now he's technically still on life support while the match up his organs for donation but he'll probably be let go by the time we get there. We'll start the drive tomorrow, arriving some time on Friday.

But even though this is very sad, somehow I can't really see it as tragic. Marc was a numbers guy and would have found the 1/2 century mark very satisfying. He lived to be 50 and then he was done. A nice, round number like that just has a good feel to it.

Marc was an amazing person. He was courageous and hard working and he accomplished things that no one ever thought that he could do. He graduated from high school. He learned how to walk again after the catastrophic accident he was in at age 15. That was horrible. He was hit by a car; spent 6 weeks in a coma and 6 months in the hospital. But he defied the doctors then. He just wasn't done yet. He lived independently from his family in a really nice group home where he had his own room (that was very important to him). He loved his job. He travelled all over the place and saw great works of art and theater. He collected baseball cards and matchbox cars. He really had a pretty darn good life all in all.

And what an amazing older brother. He set such a good example for his younger brother and sisters. He was determined and tenacious. He was brave. He never smoked or drank or gambled or slept around. And in the end, his final act in this world is to save the lives of others. We reckon he's got the loveliest 50 year old organs in the country, giving 7 people a chance to live their lives because of him. That is a noble gift.

And now he'll rest. He'll get to go be with his Mama again, on the other side. And over there, running is easy and fast. Talking and thinking are completely effortless. Loving is all that there is.

Rest in Peace, Marc. And know that you are loved and remembered, no matter what.

The Sphinx was a Monster After All

2009-03-23T19:55:00.000-06:00

Yesterday was an intense day. Some highlights:

Hazel stated that she wants "to have children with no Muscular Dystrophy." So I told her that when she is all grown up she can adopt children. I told her that that means that someone else is the mother who gives birth to the children but Hazel would be the mother that would love and take care of them every day. She asked me who would be the birth mother so I told her that they usually like to keep it a secret; the birth mother gives her child to an adoption agency and then Hazel would adopt the child from them and take him home to live with her until he's all grown up. And it costs a lot of money. She asked, very worried, do I have enough money? Yes, my darling. Tell grandpa thank you.

It was a very emotional conversation, deeply involving us both. Hazel continued on with it today, saying that she will need to have a papa for her family before she adopts any children. I told her that I think that is a very good idea.

We have a book which features the adoption of a child by a couple who can't have any of their own. When we read it this afternoon, Hazel was impressed that it was a story about what she had been thinking over herself.

Did I do right to present it that way? I certainly don't want to go into IVF and modern medical pros and cons. But I don't want to lay it out too categorically-- you can adopt or have no children or run the high risk of having a child with DMD .... She's 4 years old. I hope that she feels free to make her own, true to herself, decision when she really is all grown up.

Then of course, since it was a beautiful day, Rain was out and visible playing on his little bike. And so I had to explain to the neighbors (again) that he still doesn't walk or stand or get to sitting by himself. Hello people! He is not developing normally! Do I have to go over it again?! He needs a wheelchair! My Son Is Handicapped!! Profoundly Handicapped!!! Ta da! And Rain's disabilities are permanent and progressive. He's not going to get over it; barring some miracle, he's not going to get well. My little boy has a horrible condition which will kill him, most likely sooner rather than later. I don't want to tell the neighbors about how worried I am that he is slipping this week, over cake and ice cream at a casual birthday party.

They are just trying to be nice and it is unfair of me to get annoyed with them. I am glad that they care enough to ask. They just don't really get it. And why should I expect them to? Just because "handicapped" is normal in my family doesn't mean that these folks have ever been exposed to someone who does things differently. They just simply don't know that my children's inabilities to do what is expected of them is intensely painful to me as a parent. I love my kids but it hurts to have it drummed into me (all the time) that my children are disabled.

Hazel's delays may be subtle to an outsider (and hopefully temporary, whereas Rain's sure aren't) but they are present none the less. We're going to start the evaluation process to get her IEP on Wednesday so that she can enter into the same kind of therapy program as her brother has through the school district....

Anyway, the day just went on and on like that. But I had a great, cathartic conversation with a dear friend that evening. And I set the date for a double Darius Goes West showing (May 16). Go Darius!

And, of course, doing something productive to help fight Duchenne helped a lot. So today I had a really good day. The girls were well behaved (I watch a friend's daughter on Mondays). Rain was shiny and adorable. I made myself a cup of coffee and drank it, with good conversation, with Scott. (Ah, happy juice. Coffee can't become the same kind of horror as alcohol, right?)

I have come to realize that I have stepped out of the life of Irony and into the life the Tragedy. As your English teacher told you but you've mostly forgotten, Tragedy is when you can see the doom all around you where everything you cherish is falling apart, and you are not only powerless to stop it, you are even forced to participate in it and help it disintegrate. Think Hamlet. Think Oedipus. And yet ... if you really do it with spunk it's pretty interesting entertainment. My plan is to make this as interesting an entertainment as possible. After all, I am a dragon married to a phoenix (don't call him a chicken). If I can't go down in flames that impress the neighbors, who will?

Merry Ostara

2009-03-20T12:24:00.000-06:00

"Sweet water and warm sun bless us
sweet water and warm sun bless us.
With spring comes hope
Rising in us
With spring comes hope
Rising in us.
Out come the leaves
Up comes the grass
Out come the leaves
Up comes the grass.
Oh seeds and eggs
Ostara
Oh seeds and eggs
Ostara!"

You'll just have to imagine the lovely melody.
Merry Ostara. Spring is really here.

Spring Break

2009-03-19T19:55:00.000-06:00

Ah, sweet reprieve! What did I do to deserve this? Oh yeah, a whole lot of work.

It is spring break here which means that all of our therapists are on vacation. So we get to have a normal life for a week. And let me tell you, it is great. Other people just don't appreciate how good they've got it that they don't have to go to the doctor basically ever. They have time. Time to breathe. Time to cook. Time to play with their children.

And I've been playing with my delightful children. They have both been well behaved and healthy for 3 days in a row! They wake up in the morning and I cuddle them and feed them.

Hazel gets dressed all by herself, without prompting, in weather-appropriate clothing that matches (!). She makes her bed. She plays with her toys. She shares them with her brother. Then she plays outside on the green, remembering her hat. She checks in on a regular basis without prompting. I call her in for meals and she comes right away on the first try. She remembers to wash her hands. She folds her napkin and pushes in her chair. She takes off her clothes before bath and gets in promptly. She gets out of the bath and then we squabble for a few minutes over pajamas and toothbrushing (come on, she's 4). Then she goes to bed and says "I love you, Mama." And by 7:30pm she's snoring gently. And she's making excellent progress with her speech. She can do her "s" and remembers pretty often. She has independently discovered "k" "g" "z" "v" and "f". She is starting to use them and get them right. Perfect. I am amazed.

Rain endures a great deal of hugging and kissing throughout the day. He has brought in another tooth. He is speaking well. He says "outside" and "bike" and "shoes". He tells us that he wants to play. Today he scooted himself 3/4 of the way around the green (about 1/2 way around a city block) on his bike. It is the furthest and the fastest he has ever been able to propel himself on his own power. He is so proud. He has been voluntarily eating fruits and vegetables (but he likes popcorn better). And his favorite thing to do is take his bath. He says "bath!" as soon as we start up the stairs after supper. Then he's almost as happy to brush teeth, which he can almost say as well. And I snuggle him in bed while Papa reads Winnie-the-Pooh to us all, and as soon as the story is done, I kiss him and say goodnight ... and he rolls over and goes to sleep. Snoring his cute little nose off just minutes after his sister.

I took a bike ride today. I took a nap in the sunshine. There are daffodils in bloom in my garden. I am starting to feel almost human. I am happy. I am not stressed out. I found a great babysitter for the kids for Scott's birthday dinner. Oh the miracle of a little time to ourselves.

2009-03-07T20:05:00.000-07:00

Here is Rain, playing the harmonica.

And you may not be able to tell from the pictures alone but these two are Rain moving through the house *very fast* in perfect squid-like reverse motion. His awesome Thursday therapy session got him moving on this little trike. He is thrilled! He has some serious go-power with his latest motor aid/toy. That boy is so ready for 2 year old mischief.

Notice the smirk in this shot.

And with this one you get the full after-bonk, post "uh-oh", wow-I've-really-done-something-just-not-sure-what look. That boy giggled uncontrollably every time he bonked into something on the first day. What a happy, happy kid!

Cast Off, March Fo(u)rth

2009-03-04T20:48:00.000-07:00

Well, the cast came off this morning. Rain screamed in terror for at least 20 minutes. I have never witnessed him, or anyone else, so consumed with panic. He truly believed that we were cutting off his leg. Poor little munchkin. He'll probably have nightmares for the rest of his life.

But the bone is healed and the trauma is over. Rain has been finding consolation in being massaged with scented oils, scooting around easily, wearing both his shoes (this was a major concern of his over the past month) and, the best-- taking a bath with his sister and splashing the whole room. Hooray!