Chronicles Of Us

Snow And Rain

2012-02-06T19:37:00.000-08:00

This winter brought a bit of snow to our area. I had to go out the night the snow began and I prepared for the sick feeling I've had with snowfall for the past few years. But that sick feeling didn't happen...instead I noticed how beautiful it was. I drove slowly, enjoying the fat flakes falling on my windshield. It was amazing.

I feel wrapped up in life's circle today. Yesterday my sister got engaged, beginning a huge chapter of her life. I was excited for the possibilities that lay ahead for her. The news took me back to when Brandyn and I were engaged. We were so involved in the experience of falling in love. We were naive to how hard life could possibly become - stupidly in love. I'm so glad we had that.

Today brought the passing of a family member on Brandyn's side. The sadness has amplified the wide-open wound of loosing Brandyn's sister and the heart crushing future Duchenne Muscular Dystrophy has for us. The afternoon has been occupied with tears welling in the bottom of our eyes (and a more than a few falling too).

The person my sister in law was is permanently etched into who I am. I miss her every day and it feels strange that we are continuing life with her gone. And there will be a day when we will have a loss too big to comprehend. How strange life will feel after that?

This post has little to do with snow and rain but it all feels connected right now: getting past the stomach ache over simple snowfall; bliss in the beginning of things; the impact of loss.

I've been listening to a song on repeat...

Your ship may be coming in
You're weak but not giving in
To the cries and the wails of the valley below
Your ship may be coming in
You're weak but not giving in
And you'll fight it you'll go out fighting all of them...

song by Rilo Kiley

Along The Way...

2012-02-02T19:52:00.000-08:00

My last post was prior to a doctor appointment for Isiac...that appointment was rescheduled for the end of February. Rescheduled appointments are a relief for a few days then I remember I'll just get freaked out again about two weeks before the next appointment. My brain files it away as a "To Do."

I've not gotten along well with my brain for years now. Its "To Do" file is packed with scheduled freak outs over future events. And when I'm not in panic mode, my state of mind simply downgrades to anxiety then depression. I work to keep things in some sort of manageable balance. But grief getting stirred into this mental medley has made things more difficult.

*********************************

Yesterday I read a synopsis of a movie I want to watch soon which speaks to how nature changes life. It's an appropriate movie for this point in my life, where I feel experiences and nature have changed me and my family immensely. There is so much distance from the person I was ten years ago. I don't see the changes as bad (although some might disagree), I see myself as someone in a continual flow through this journey. I would say one of the greatest transforming influences for Brandyn and I has been loving Isiac. We experience constant converging streams of happiness, laughter, grief, frustration, pain and joy.

*********************************

Ten years ago, appointments overwhelmed me. Now they just throw me off a bit...all those years of life have not resulted in a completely balanced mind. But the years haven't destroyed me either.

Friday On My Mind

2012-01-24T20:45:00.000-08:00

Isn't this complete sweetness? I caught Isiac right as he looked up at me, before he realized I was taking a photo...before he got the chance to contort his face into a photo-mocking expression.

His legs have recovered from falling. No more screaming in pain...and oh my word, that is such a good thing. He has an appointment with his Muscular Dystrophy doctors on Friday. I keep assuring myself it will be fine, nothing will need to be done.

I'm on a streak of paranoia this week. One of the Duchenne Muscular Dystrophy boys I follow through a blog had surgery just a few days ago. It wasn't revealed what kind of surgery, just one that would "hopefully prolong his life." It was most likely spinal fusion surgery, the surgery Isiac may have one day to straighten his spinal curve.

Since learning Isiac has a progressive spinal curve, I dread his checkups. A couple weeks in advance of every checkup, my mind repeats an "everything is OK" mantra. As if I have any power over the universe.

Friday morning, I will drive Isiac up a winding hill on the west side of town to his doctors. I will be calm, hold his hand and smile at him as often as I can. I will assure him everything is alright (even though I know it isn't and the checkups are with doctors who can't do a thing to stop this disease), as I have done every six months for the past six years. I'm almost a pro at it now.

Homage

2012-01-14T17:36:00.000-08:00

December was my time for a phone upgrade so for Christmas, I got an iPhone (yay!). I was sitting next to Brandyn while we scrolled through the accessories. I saw this case and had to have it:

Not because it's girly and purple. No, it's because when I saw it I squealed in a pitch way too enthusiastic to be normal, "Put A Bird On It!" (a phrase from season one of the IFC show Portlandia)

I love that show. I love my bird-clad phone case. It's the little things.

And by the way, season two of Portlandia has Brandyn and I saying "We can pickle that." Because we're dorks.

New Entertainment (sort of)

2012-01-14T16:54:00.000-08:00

Awhile ago, Isiac started watching the Simpsons. He's asked to watch episodes before, but until recently I figured he was too young for the show. For my own sanity, I should have kept that door closed. I am now routinely plagued with clips, YouTube videos and entire episodes of a show that revolves around animated yellow people telling butt jokes.

This afternoon, he begged me to watch one episode with him. It was a long 30 minutes.

But it made him so happy when I gave in and laughed along with him.

Now I have to admit I laugh at butt jokes. The things I do for this kid..

Little Yellow House In The City

2012-01-04T21:56:00.000-08:00

We seem to be serial movers. We planned on purchasing the past two places we've lived, but life pretty much never follows our plans. Our latest move was this past August. This one is going to stick because we actually bought the home.

Poor Brandyn put up with my insanity for weeks. From the time we qualified for a loan to the day we moved in, I was a living ball of stress. Sometimes I feel bad for all my crazy that Brandyn puts up with, then I clean up the clutter he leaves everywhere and I figure we're even.

We really love this house (in spite of the Creamsicle orange bathroom paint). It's almost perfect for Isiac...just needs a few tweaks for full accessibility.

I've been extremely slow unpacking boxes from the garage and organizing. Since it's a brand new year, I'm gonna get busy. I just have to paint all the walls and find a place for everything in a house with less closet space and one less bedroom (that's possible, right?).

Can This Just Be Over Please?

2011-12-30T00:42:00.000-08:00

The second day of winter break, Isiac fell out of his wheelchair. It wasn't a hard fall, but it doesn't have to be hard to do damage to Isiac's body. His muscles have been taken over and changed by Muscular Dystrophy.

His doctor thinks he has a small muscle tear by his right knee. She called it a "baby tear" but there is nothing small about how much it hurts. It's been two weeks of awful pain for him. Two weeks of my stomach churning with worrying over him.

He is getting better, which is such a relief. It was a complete accident, caused by bad timing and him leaning too far forward without a buckled seat belt . But I see him falling like it's in slow motion over and over in my mind...I keep replaying when he asked "Mom, why did you drop me?"

I'm gonna say this winter break pretty much sucked eggs. We totally need a do-over.

Christmas Eve & Exhausted

Sweet Sixteen

2011-12-23T19:38:00.000-08:00

Anniversary number sixteen.

This is the third year in a row we celebrated without Isiac coming along. The day before, he heard Brandyn and I deciding on a steak place for our date. Isiac thought he was going with us, naturally, so he added his thoughts on the matter.
"Yeah! Steak sounds like a good idea."
"Um, you're not coming with us."
"What? But I want to go out for our anniversary!"

Did you catch that? He called it our anniversary. It's our fault he's confused, really. He's been along too many times. But child care is not easily available when there is an endless list of information one must know to be alone with him.

When we reached the momentous ten year anniversary, we brought Isiac right along with us. We even clinked our glasses of soda with his in a cheers to ten awesome years.

Hashtag

2011-12-13T02:10:00.000-08:00

I read a blog of a woman named Jess, who has a daughter on the Autism Spectrum. I relate to a lot of what she writes since Isiac has Aspergers (which, by the way, is on the Autism Spectrum). There are so many variances between each individual with Autism...at the same time, so many common threads.

In a recent blog post, she pooled together a list of tweets with the hashtag#YouMightBeAnAutismParentIf.

I wanted to re post a few comments that were so familiar, they could have been written about our life in Isiac's world:

You're pretty sure your kid would never leave the house if given the choice.

You know details of (fill in the blank) that no one should ever know.

Your defenition of funny has changed. A Lot.

Your kid can't tell you what happened an hour ago, but three years ago...Remembers every detail.

There are lists and links to lists, if you look into the Twitter feed. It's an odd feeling of relief to know you're not alone...not the only parents who face the quirky, uniquely challenging life with Autism.

A Quick Pick-Me-Up

2011-12-08T20:27:00.001-08:00

This past year has been tough. Most days I feel old and broken down and it shows on the outside. But I have the sweetest son who will spontaneously tell me he thinks I'm a "cute mom."

Tonight I overheard him in the other room talking to Brandyn.
"I think mommy is beautiful. Do you think she is?"
"Yes, I think so too."

There's no way to feel down for long with that kind of love floating around.

Cards

2011-12-01T16:40:00.000-08:00

Isiac's birthdays are complicated for Brandyn and I, with the Muscular Dystrophy factor always intruding. Even so, birthday thirteen was pretty fun. My mom was here from Utah and Brandyn's brother who lives in Nevada was here. We had a house full of family and Isiac loved it. I loved watching him be happy.

I had to show these birthday cards made by Isiac's cousins...

From Izzy, who lives in Utah.

front view:

inside view:

"You are the sun and you light up the day even when you're away."

So sweet!

From Dominic, who lives here in Portland.

front view:

"To: Sargent Major Isiac Hale

From: Chief Petty Officer Dominic"

inside view:

"Happy Birthday Soldier.

US Marines Hoorah."

Way cool.

Sappy Thanksgiving Thoughts

2011-11-23T02:29:00.000-08:00

Who said the American Cancer Society could be the official sponsor of birthdays? Not that I oppose the idea...in fact I think the ad campaign is powerful in its simplicity. But I don't like the unexpected swell of tears whenever I see, hear or read an ad. Do I need to cry in the middle of The Daily Show?

I've been a bit freaked out because I am making the Thanksgiving turkey this year. The thought of ruining the all-important main dish of a holiday is a bit much. Plus we're having the meal at our house which means there are so many things to ruin. My brain keeps nagging me about how many things I should be doing to make the day perfect.

But here's where I give you a glimpse into the unpredictable workings of my mind: The above mentioned ad for birthdays changed my perspective on Thanksgiving, or rather, told my brain to shut up and calm down already.

I read a post in Her Bad Mother ,one of the blogs I frequent, and decided to make a concerted effort to enjoy the holiday and all that comes with it. Catherine (writer of said blog) has lost her father somewhat recently and her sister's son has Duchenne Muscular Dystrophy. She knows the heartbreak of losing a loved one. She also knows the hovering heartbreak of Duchenne. As she puts it "Everybody faces loss, because – here’s the aphorism – life is short. Too short. Too short to not celebrate".

While I'm not evolved enough to celebrate every day, I think I can manage having more fun during holidays. And there's a lot of good in celebrating a day with my two favorite people, even if the turkey isn't perfect.

i don't feel much like forming long sentences

2011-11-19T19:28:00.000-08:00

I'm just gonna get the blog going again with a photo.

One of the photos I took on Isiac's 13th birthday. All my photos turned out too dark, too bright or too blurry. However, this is my first post in six months. And this follows the video Isiac made for his aunt Amanda, who passed away twelve days later. So I'm giving myself a break over the poorly executed photography I'm sharing.

I will find better photos (if even marginally better) and brighter things to talk about. Right now though, I have to make dinner.

Destroy Kancer (yes, with a k)

2011-05-03T21:10:00.000-07:00

The morning Amanda went in for her mastectomy, she stopped by the house. Isiac was home that day and Amanda asked if he would use one of his computer games to make a "cancer planet" and destroy it for her.

A few weeks after her surgery, Isiac asked to use my phone. I figured he was going to call someone for a chat, as he often does. He came back a few minutes later and showed me the video he had made.

He made this all on his own, holding the camera himself and using his own words for Amanda. He does say "eff cancer" at one point, which is so Isiac and also so Amanda. And it's difficult to read, but Isiac spelled out "Destroy Kancer"...cancer with a K.

For so many reasons, Amanda is one of the most supportive and important people in Isiac's life. She's just that awesome.

Out For Lunch

2011-05-03T20:05:00.000-07:00

Love that kiddo's eyes.

Isiac has a fondness for going out to lunch. I don't mind this too much because I get to be his lunch date. He loves the whole experience of it: picking a place to eat (Panera Bread is his usual choice); reading through the menu; asking questions about sandwich bread options or what might be the soup of the day; eating an "awesome" meal in the middle of the day.

It really is great to sit with him and have conversations when he is feeling happy about life. These times are often when I get to know him best.

Beyond Words

2011-04-29T22:43:00.000-07:00

I wrote about my sis-in-law's cancer last July. It was a year ago, this month, she found a lump in her breast.

She's a strong person with an amazing amount of fight in her. She had chemo before a lumpectomy, then a modified-radical mastectomy followed by more chemo and radiation. There have been shots to boost her blood count (shots that made her feel awful in all kinds of ways), platelet infusions and blood transfusions. All that...and the cancer still grew, still metastasized.

For months now, my mind has been full of things which could have been written about here. But I've been stumped as how to put such a complicated and emotional story into words. I was afraid to put anything into the universe that wasn't positive for Amanda. But the day came when she sat across from us and told us nothing was working.

I think we are all holding out for the day she begins getting better. We love her too much to not believe.

Giving The Doctor Bad News

2011-02-05T21:08:00.000-08:00

Late night on New Years Eve, Isiac called me to fix his blanket for him. His muscles are to the point where a blanket feels heavy and he struggles moving his arms and feet against the weight. I adjusted the blanket over his feet, leaving his toes out just a bit (the way his blanket has to be at all times). I snuggled next to him, on the edge of his bed, so I could tell him the year was about to be over.

"It will be 2011 in just a few minutes."

His eyes popped open and instantly filled with tears. "I don't want to die in 2012, Mom."

"What? Why do you think that will happen?"

"The world is going to end in 2012. I don't want to die in a year."

I think it was 2009 when Isiac found out the Mayan calendar ends in 2012. He either heard or assumed that small piece of information meant the world would end. I had told him before how that isn't scientific proof of anything and I thought he'd let go of it. Fortunately, giving him a hug and reassurances the world would be fine was enough for him to fall back asleep that night.

Yesterday, I took Isiac to his annual cardiology appointment. His heart is doing well and we don't have to get another check-up for a year. As we left, the doctor waved "See you next year." Isiac yelled back with a smile "The world will end in 2012, so we won't see you." I guess he didn't really believe me when I told him it wasn't a fact...but he can smile about it now. The doctor is a bit confused though.

Holdiay Photo Attempt

2011-01-11T13:54:00.000-08:00

I had the intention of sending a Holiday email to family & friends. Then I couldn't think of things to say about they year of 2010. There were good things, of course. But all the elements added together make for a not-so-great holiday card. It was one of the few years of our life I hope becomes a faded memory, with only the good spots left vivid.

I know our photos are not great, however:

1. This self-timer photo shoot is one of the things I can laugh about in 2010.

2. I happen to love Isiac's "robot-photo-smile," which he began doing around 4th grade.

3. My mom...she doesn't get to see us enough.

Family Pose:

Isiac's idea: "Surprised Faces."

I had to crop myself out of this one because my face
actually scared Isiac.

Hopefully for the 2011 holidays we'll have better photo-luck.

About Christmas 2010

2011-01-11T12:52:00.000-08:00

We had a bit of fun leading up to the Holidays because Brandyn and I ~~lied to~~ surprised Isiac. We told Isiac "if you wish hard enough, Aunt Mindy might show up for Christmas." Of course, we knew she already had the plane tickets to arrive on Christmas Eve. He was completely surprised when we drove to the airport and Mindy was there.

Later that day, Brandyn's youngest brother came to town for the first time in five years -- also a surprise. He shocked each (and tackled one) of Brandyn's family as they arrived for dinner. I really didn't care about presents at this point, it had been about 12 years since all of Brandyn's brothers and sisters were together for Christmas (and I am aware of how "Tiny Tim" that sounds).

Anyhoo..Pictures from the party:

Mindy's trademark "thumbs up."

Brandyn's dad, Brandyn and Isiac, holding Aunt Jen's new baby. He's so cute with babies and wants us get one. He doesn't understand a baby wouldn't play video games with him, even if it's a boy.

After dinner, Brandyn passed out presents from family. Notice how he looked semi-unconscious from massive amounts of turkey.

Gabu (nickname, of course) was ecstatic to help Brandyn pass presents, even though I think she wanted to open all of them. By the way, she is completely adorable.

Love Dom's face here as he ripped ribbon off the box.

C couldn't stop talking about, and showing me, his mini skateboards

...because they were so awesome!!

Brandyn's youngest brother -- he was introduced to the ceremonial "snowball fight." This is where everyone throws tissues and wrapping paper from opened gifts.

We totally pummel each other -- good times.

A small glitch occurred before dinner when someone pushed a ton of sweet potato peelings down the drain, overloading the disposal and massively clogging the pipes. But we totally don't blame you ~~Mindy~~ Anonymous Person -- you are still loved. We had an amazing holiday, thanks to all our family.

Cycling

2010-12-21T04:26:00.000-08:00

Brandyn and I watched a movie tonight. It was funny and sad. There was a clip of the song "Memories" and I do mean that song from "Cats." Now I've never seen the musical "Cats," so I have no reference to why a cat would be singing such a song. And though I've heard this song many times, this clip brought me to tears.

It is usually unexpected, the way some familiar thing will bring grief to the surface.

Last week, Brandyn and I celebrated our 15th anniversary. It was also the night Brandyn's sister went into labor. So after our dinner out, I should have been all smiles. I think I can now count on my emotions to be inconvenient and surprising because as soon as we got in the car to head home, the tears began. I was happy to soon meet our new niece and at the same time, a flood of sadness washed over me. Happy and sad, like the movie we watched tonight.

I have to accept this state of being...never knowing when emotions will pop up. My child has a disease with no viable treatment and no cure. I'm not sure why I've been thinking I will get to the point of permanent emotional wellness. I would, however, love to be at a place where ten seconds of a song won't effect me for hours.

Fifteen Years...

2010-12-21T04:24:00.000-08:00

Anniversary - Dec. 14th

and we're still in love.

The Things-Matter-Now Age

2010-12-17T21:59:00.000-08:00

So Isiac turned twelve in November. Yes, I do realize it's late...and how could I be such a horrible mother to wait over a month to speak of my child's birthday? My new motto is to not stress about things like "being on time" or "getting things done" or "goals." In fact, I'm just doing this post today because I strained my back lifting Isiac and can't get out of this chair.

Isiac turning twelve was a huge deal for me. I remember my life pretty well beginning at twelve so I figure it's some kind of magical age where the brain opens up and pays attention to life. The months leading up to Isac's birthday, I took opportunities to stress the big-deal of turning twelve. Brandyn and I both would let Isiac know how he would be, officially, "A Big Kid." I totally use that ~~brain washing~~ motivational tool now-- when Isiac's whining or something of the sort, I say "That's not okay because you are twelve now." Manipulative? Yes.

By the way, I am totally expecting someone to say it to me - "Jen that's not okay, you are 36 now."

Brandyn's family, who always bring a whirlwind of chaotic fun, all came to celebrate. Isiac loved all his gifts, but he had an extreme reaction to Aunt Amanda's git of a video game he'd been wishing for intensely.

**I need to interject a reminder. Isiac has Asperger's Syndrome and will say whatever thoughts/words that come into his mind -- no filter in this kid. He has learned almost every expletive, attending school with many kids who also lack such a filter.**

Isiac opened the completely unexpected video game from Amanda and began screams of delirium.

Then he topped things off with "THANK YOU SO BLEEPING (yes, that word) MUCH"!

Isiac's shock and joy captured in a photo:

(there is a mental image of Brandyn's parents' expletive-shock ingrained in my mind)

Isiac's cousin, Dominic, helped him open the presents (he's a cool kid). Uncle Nate helped show them off (he's cool too).

Blowing out the candles...

I look like a card board cut-out in the photo but I assure you I was really there.

Isiac's birthdays have been bitter-sweet since learning of his DMD diagnosis in 2006. The days leading up to the event had me a bit blue. Brandyn and I took the hours of his party to celebrate and stay in the positive.

We are so fortunate to know this unique, creative, funny and extremely loving child (expletives and all).

It's All For The Costume

2010-11-07T02:28:00.000-08:00

This year Halloween felt like a mini-marathon. Two days before the actual holiday, there was a Trick-or-Treat event in the area where Brandyn works. Isiac had no costume...yet. He wore one of his Storm Trooper masks and held his matching Trooper Laser Gun (of which, he has two varieties. Just sayin.).

We did not have a fun time that day. My child has issues with Halloween. The task of going from place to place, asking for candy and having to say "thank you" is a bit much for him to take.

Lets talk about what Isiac does like about Halloween...the costume. He has been pretty consistent with Star Wars. But this year, he wanted me to make a Spartan helmet out of cardboard and "spray it with plastic spray out of a can." He saw this on the internet and, for weeks, expected me to make this freaky contraption. Plus, he thought he was being benevolent by having me only make the helmet and not an entire suit. My thoughts on that were "Plastic spray sounds stinky, flammable and expensive. Plus I need to put better parental controls on the internet." So we went to Party City and Target in a feeble attempt to find something I could easily alter using spray paint. No luck.

So Saturday rolled around...the day of Trunk-or-Treat. You know, the Mormon tradition of going from car to car in a parking lot, instead of house to house. (Just FYI: This is such a good thing for kiddos in wheelchairs. The woman who thought of this was a genius!) Anyhow, Isiac was debating if he really felt like going out because of the huge 'Spartan Costume Let-Down.' I was more than fine with staying home. I thought things were decided until...one hour before parking lot deadline, Isiac decides we're going and he wants to be a Sith. As in a Star Wars Sith. But not a Sith from the movies, like Darth Sidious or Anakin-turned-Darth-Vader. No, he wanted to be "Star Killer," Darth Vader's secret apprentice as seen in the video game "Star Wars, The Force Unleashed." (Do I sound nerdy yet?)

last minute, thrown together:

Star Killer, The Sith

Little note: Isiac thought it was totally awesome how eyeshadow made just the right "dark force" effect.

(Yep, I do sound nerdy.)

I loved the angry looks Isiac gave people all night and he had a fun time. We went to Brandyn's parent's house after, to hang out with some of the family. We came home that night completely worn out but we actually enjoyed Halloween.

Just because I want to--

Photos of past Halloween:

2009, Disgruntled Pirate.

2008, Darth Vader

and the Most Awesome Pose Ever

2007, Clone Trooper

(he still wears this mask, when being a Clone of course)

2006, Anakin Skywalker

and (close) second Most Awesome Pose Ever

Mia Mamma

2010-10-22T17:05:00.000-07:00

My mom came for a visit in September. Isiac, of course, had her play endless hours of video games. She came for the best and worst week, all wrapped in one. I was sick and slept for what seems like her entire visit, so it was amazing to have help with Isiac but I hate I missed time with her.

When she left, Isiac was sad and I panicked the whole drive back from the airport: I have to go back to life without breaks and how am I going to get sleep anymore without my mom here?!!

Ok, it's not just the sleep...it's all she does, plus having her company that makes it so great when she's here. I love independence and I'm a control freak when it comes to my home. But it wouldn't be bad if my mom were to move in for just a while -- just a few years, nothing crazy.

Not an unreasonable request, right?

Looking At The Past, Present And Inside

2010-10-22T01:31:00.000-07:00

I transferred my phone's photos the computer the other day. Whatever I did put the new uploads in a file with photos taken way back in 2006, just before Isiac turned eight.

Looking back is never simple. Isiac's body has gone through a lot since then -- steroids for the DMD, diabetes then being in a wheelchair for 18 months now.

Sweet Smiles:

2006

Ready for Battle:

2010

He'll be twelve in a few weeks...hard to believe. Looking at how disease has changed the outside of him - his appearance - is frustrating. I will always think he is my beautiful boy but he thinks less of himself. It's hard to hear him say he doesn't like his "puffy face." Assuring him he is still a cutie doesn't make him feel better either.

I know (and tell Isiac all the time) appearance is nothing, especially in comparison to the person he's grown to be. If I just had a camera that could capture the aesthetic of his intelligence, imagination, wit and bravery...a photo of his "inside."

Does Apple have an app for that?

Creative License

2010-09-19T01:54:00.000-07:00

Before ever having a baby, I was familiar with basic fun activities a mother would do with her child. I bought the Legos, Playdough, and everything Crayola. When my baby boy finally reached the age of creative fun, I was hit over the head by the sledge hammer of his uniqueness (or, in other words, stubborn individuality).

Isiac never took much to Legos or blocks. He liked me to build while he acted as Foreman. He commanded me to build perfect, uniform, rectangle towers so he could then knock them over and laugh at the chaos. Building things by himself, he found frustrating and boring.

Playdough held his interest for ten, maybe twenty minutes. He did think it was neat to tear the dough into tiny pieces and throw it across the room. Sculpting was not his forte.

The dagger to my heart was when I realized it was futile to get Isiac interested in art. I love art and had visions of my child's masterpieces filling a wall of our home (a dream I had to let die). He could care less about painting, hated drawing and despised coloring.

Little side story: There was an Art Therapist with a table and supplies set up at Isiac's endocrinologist one day. While we waited, we sat at her table. She was really happy to be around the children and just so perky when she spoke to Isiac and handed him painting supplies. He was in a rare mood and actually painted -- he painted a "devil." I prompted him to make the picture less grim, "draw that devil holding a flower or something happy." He painted a bright red sun, because "devils can't be in the regular sun." As we were leaving, I noticed his picture was not chosen to hang on the waiting room wall and the therapist was not as perky as before. I guess she'd never met an "Isiac" sense of humor before.

Needles to say, I was shocked at the end of last school year when he brought home three pieces of art. They won't fill a wall but I am framing these puppies for sure!

First, a chalk drawing of his mother (me!). I love the way he captured the blue tone of my skin.

This piece began as a dot-painting. He used the end of a Q-tip, which up close looks really cool. He told me he got tired, threw away the Q-tip and used his fingers to fill the remainder of the page.

He's a rebel that way.

The last piece is broken up so you can appreciate the effect:

When looking from left to right, it's simply a cute painting.

Further across the page, the complexity of Isiac's artistic mind appears. I doubt even the most esteemed art critics would be able to discern the meaning of the characters on the right...

Isiac explained it to me and, really, it makes a lot of sense....see for yourself:
(I used my wording to give more of an explanation)

I'd say he's quite brilliant, don't you think?

(painful) Realization

2010-09-17T00:23:00.000-07:00

Breakfast on the 1st day of 6th grade

My boy is growing up.

Solstice

2010-09-14T21:54:00.000-07:00

I usually have anxious feelings when back-to-school time arrives. Not this year. School resuming and the weather cooling off came as a huge relief. It wasn't that Isiac was leaving the house, not at all, it was the symbolism of this wretched summer ending.

Isiac and I used to have fun summers. That kid and I would go around like buddies (and Brandyn too, on his days-off). Play structures drew Isiac in like a bug to light. And it wasn't the slides, swings or climb-ropes of the intricately built structures. For Isiac, it was about being up high, on top of everything. He was King of the Castle, Ruler of All.

Because I gave him no siblings (nobody wants to hear about our family planning), I was always his playground pal. There were no limits on what a play structure, group of boulders, or grassy hill could become with his imagination. Brandyn or I were there, as his co-pilot, ready for adventure.

Summers slowed down a bit as Muscular Dystrophy wormed it's way into our lives. Then even last year, his first wheelchair-bound summer, we did what we could -- the zoo, science museum, movies, sword fights in the living room...we had fun. This summer -- not all bad but not-so-fun either. I've hated watching Isiac's life become even more dictated by disease.

This all may explain why I've not kept up on posting. I've not been in much of a good place mentally which is no surprise to those who know me well. Though, letting myself get too "unbalanced" can be confusing when writing....

When Brandyn read my last post (about my lack of posting) All he could say was "What the...?"

My answer to that was "Exactly."

Summer Slacking

2010-08-23T20:49:00.000-07:00

I do remember I have a blog, really.

I turned older at the first of the month. Turning older hasn't sat well with me since turning 30 ( six years ago). Pretty much all of August has been a hazy headache and I've let myself have an "I'll get to that later" attitude. Actually, I'd say almost the entire summer has been this way...as awful as that is to admit.

I'm aware I have a poor attitude...

I'm close to 40 now, cut me some slack.

Thank you.

However...I'm wondering if maybe I can blame a chemical leak for my lack of getting-things-done. I am thinking there might be some mind altering affect going on here instead of me just being a slacker.

Evidence:

The other night Isiac had a giggling episode. It reminded me of myself when I'm up at 2:00 in the morning, laughing like mad at something not-so-funny yet unable to stop. He had the silent, head bobbing, belly laugh thing going on. Neither I nor he even knew why he was laughing. Freaky, no?

If we don't find that all-to-blame chemical leak I will catch-up on stuff I should have written about during summer, when Isiac goes back to school. That will be after Labor Day.

What's Going On With...

2010-07-31T21:48:00.000-07:00

I've been trying to write about this for a while now - news about my sister-in-law. It was April when she found a lump in her breast. I can't write very much on this - it's hard for me to put into words how I feel, we feel, or what we're all going through. I can't find the right words, the sting is too fresh.

There is that waiting time after tests and more tests, when nothing is "for sure." During that time, she came over to our house to give us what information she'd learned and researched. When she left that night, I was convinced it was not cancer, sure of it. She's too young...35 is too young. I still feel that hit-in-the-face-with-a-bat shock when the tests came back positive for cancer.

Three months later, she is almost finished with 12 rounds of chemo. This treatment was the last thing she wanted to do, but the "Stage III Aggressive Cancer" had grown the lump three times larger in just a month. Not much choice was left.

Every time I see her now, I'm amazed. She hates what is happening in her own body and mourning the loss of her hair. To me, she looks as gorgeous as ever - even a healthy glow in her face. And I've not seen anyone rock a head scarf like Amanda.

I'm so blown away by how she stays in the positive because, of course, It's not all sunshine and rainbows. I know there's that ugly side, with pain and tears and emotions overflowing. It hurts to know she has to go through such things.

As for "in law," those words that would place distance are not between us - I think of her as my sister and one of my most cherished friends. And how fortunate I am to have such a friend.

Today: Defeated. Tomorrow: Something Else (Like Make Cookies)

2010-07-03T05:29:00.000-07:00

I planned on posting on other topics, but the crescendo of pitifulness today hijacked my train of thought.

It's July and I had to turn the heat on this morning. Really. In July.

It was rainy, windy and gray. So no gardening got done (again).

I didn't get the laundry put away (again).

And I dropped Isiac on the floor. Yeah, that was the kicker.

He didn't get hurt...just scared and frustrated. Me too. It all revolved around bathrooming, which is the most difficult thing to do for Isiac. When he slid out of my grasp and clunked down - half on the feet of his wheelchair, half on the bathroom floor - I felt defeated.

This defeated feeling is not only about logistics of care with Isiac's physical deterioration. No, the emotional half is just as big and wears on the body just as much. His questions about death have become more frequent. He asks me when/if he will die as tears roll down his cheeks. I think he feels it...with every weakening muscle; as every task becomes more difficult; every time he reaches for something but can't lift his arm enough. How could he not feel, in his mind and soul, the death-grip this disease has on him?

I follow a blog of a woman who's Nephew has DMD. Her sister's son. She "gets it." Somehow she understands the ugliness and pain of this disease, even though it is not her own child she will be losing. In
This Post of hers, she speaks on one boy's sudden death and the impending loss of her Nephew:

One’s heart would stop beating, would it not? How could it not?

It wouldn’t – it doesn’t – of course. The heart does, as the song insists, go on, even after the worst griefs. It restitches itself, it mends, it requires none of the king’s horses and none of the king’s men, just time and love and, I imagine, faith. But it always remains scarred. It is transformed.

My family is losing a child. You know this story. It is a slow loss. The ticking of the clock has been louder, faster, of late, but still: the loss will not be sudden. It will not be unexpected. We have watched its approach for a long time now. We see it coming. This monster is not under our beds or in our closets or in the woods. It stands in the corner, in plain view, tapping its feet. We have come to know it. Knowing it does not make it any less terrifying. I have wondered, sometimes, whether it would be better to not see the monster, to not know. My sister and I talk about this, a lot. It’s better to know, she says. It changes your heart in advance; it strengthens it, readies it. It teaches you lessons, the monster. You cannot ignore those lessons.
You hug your children more.

There are days when I question this, when my own grief about Tanner and my sorrow for my sister become overwhelming. When I’m forced to confront questions about life and death and heaven and love and the soul. When the monster is too hard to ignore. Don’t ignore it, my sister says. Accept it.

I can’t, I can’t. I look at Katie, suddenly facing the monster, and my heart shudders in terror, and I know, I know deep in my bones, that when the monster steps forward for Tanner, I will curl up in a ball and shove my fingers in my ears and sing LA LA LA LA and I will deny it, deny it, just like I did when it came for my dad, just like I still do when I think of my dad, and I will not be able to look up, I will not be able to move, I will not be able to help. I am ashamed, knowing this. I am so ashamed. I am struggling to get past it, but today, I am failing.

I can hear Isiac snoring in his room, down the hallway. He had more-than-usual the amount of anxiety and took hours to fall asleep, so that snoring is music.

*Quote taken from Her Bad Mother

He, Who Bought Us Breakfast Burritos, Which Forever Changed Our Lives

2010-06-24T02:08:00.000-07:00

Near the end of May...

I receive a message from my little brother, Dave. He tells me he's flying up for a visit and will arrive on Sunday (it was Tuesday when he sent the message). Later that day, a follow-up message: "I hope that's alright, the ticket is non-refundable." It was, of course, alright. We hadn't spent time with Dave (who is now 27 and not so "little" a brother) since he stopped for a night, the summer of 2007.

He happened to be arriving in the middle of a firestorm of emotional stress: Brandyn in pain from his messed up spine; another family member with a devastating diagnosis (which I'll get to in another post); and I was near my mental and physical limits, about to break. So most any other guest would have pushed me over the edge. But this is Dave -- I can say "find your own breakfast" and I know he won't be offended because he knows I hate mornings. Plus it just makes me smile to say "Dave."

I was happy to be seeing him after so long, but I had no idea he'd be a saving grace. He's a calm soul and I very much needed calm. He also spent hours on end with Isiac...going for drives, hanging out, playing video games and such. That -- hanging out with someone, a person who listens to him talk about anything and everything, having someone to laugh with -- makes Isiac indescribably happy. When Isiac is happy, I can be happy and even relax.

He stayed for six days, which seemed like not enough time. The only pictures I took were a few with my phone, in poor lighting (yes, I feel rotten about it). The picture above is from a night we went out to eat. The wait at that place was incredibly long but we didn't mind so much...we had great company in Dave. If life would only be so simple, we could be around him more often. And the happiness he brings would be around more too.

Sorry, Dave, if my over-sentimental blubbering cuts into your cool image. But, dude, you even took Isiac to get a haircut! This elevated you to Hero Status - you're gonna have to live with the burden.

Crafty Project Idea

2010-06-15T18:28:00.000-07:00

What happens when Isiac and his cousin, Dom, get bored:

Sticker Face

What happens when Isiac becomes mindless with laughter:

(and Dom is a willing accomplice)

Sticker Mask

I'm still finding tiny stickers all over the house and they really stick to things.

Fun for me when I am bored and feel like scraping for 15 minutes straight.

It's a win/win project.

Conversations and Twisted Sentiment

2010-06-15T12:13:00.000-07:00

It was a couple of days before Brandyn's back surgery.

"Oh my gosh, my comb is on the toilet!"

"Yeah, I moved it out of my way."

"But you had to move it to the toilet? T h e T O I L E T? You know who I am, right?

"I didn't put it in the toilet."

"But toilet germs are all over it now. It's ruined."

"You're crazy."

My favorite, wide-tooth comb, made of the best plastic ever, pretty much the only thing I use to brush through my hair, went in the garbage. I hate germs that much.

~~Cut to the night before surgery. We were both lying in bed. The thought of "1% chance of death from anesthesia" the doctor had quoted was looping through my mind.

I grabed Brandyn's hand, with tears in my eyes. "I forgive you for my comb."

After a pause he squeezed my hand tight. "That's about the sweetest thing you've ever said."

We held hands in the dark extra long that night.

And here he is, post-op. His face was a bit swollen from tons of IV fluids and he was only at about 1/4 mental capacity (pain meds).

I was just happy to see him.

Now no more surgeries. Ever.

I Must Have Kicked Fate's Dog Or Something

2010-06-10T03:00:00.000-07:00

Fate - the little imp - has had an arrow pointed our way. The arrow being back surgery. We thought Isiac was going to have major surgery this year. We lived with that thought looming over our heads for months before we were told he didn't need it..yet.

Fate, being the devil it is, decided leaving us alone would just not do. So out of nowhere, pain smacked
Brandyn's back...it was a Herniated disk. He also had sciatic nerve damage - which caused rapid atrophy in his left leg and possible permanent nerve damage in two spots. And this started the week of his birthday. Ugh.

You know, some things just are overkill. I could have been left with the weight of my son needing very unpleasant surgery in a couple of years. That was enough. Did my husband have to get smashed in the back too? Not cool, Fate. Not cool at all.

So, Brandyn had back surgery last week. Thankfully this is 2010 and there are Microneuro Surgeons who make very small incisions. And thankfully Brandyn's mother loves him enough to take him to the hospital, sit for hours in the waiting room and then sit more in the hospital room as he came out of a post-surgical/morphine stupor.

I could only be there for a couple of hours. I came in at the end of the waiting room phase. Brandyn's mom had been in there forever, with no updates. She was clutching a pager that should have gone off at the end of Brandyn's surgery. After waiting another hour with her - still no news - I got up and hunted down someone. I may look innocuous but I can be fierce when provoked.

The older desk clerk was of no help - he was standing between me and info about my husband. Bad place to be. After asking and being ignored three times, I was ready to put him in an Jujitsu Arm Bar. Lucky for him, a shift change occurred just before I approached and the new clerk gave me information.

Ahh...Brandyn's mom (Elaine, by the way. She does have a name) and I went to the cafeteria and ate a big lunch. Lots of calories get burned while waiting and worrying.

Brandyn is home and recovering well. The good thing about recovery is all the time laying around - time for video games and naps and comfort food. Comfort food for the stressed out wife too.

On The Late Side

2010-05-21T16:34:00.000-07:00

because it's been over a month...

My Mom & My Sister, Mindy

Spring Visit, 2010

Have I said how lucky we are to have my mom? I doubt it, since I am the ornery type. I also love that I get along well with my sister, who is ~~12 years~~ a tiny bit younger than I am. Mindy and I can always find things to laugh about.

*Tangent:

I've been fortunate in most our family (yes, even the in-laws...especially those guys). We get all these fantastic people, I'm sure, due to Isiac. With all his needs and amazing heart, he deserves the best.

*Back to Post:

Isiac talks to my mom on the phone a lot and planned for her visit, this summer. But then every time he spoke to her, he convinced her to move the date up. She's a softy that way. Isiac can also wear people down with his mind-bending powers. She really had no chance against him.

So it became a spring - not Summer - visit. Not the best weather time in Oregon. But whatever, eh?

On the one good weather day, we made it out to Waterfront Park. A place I love...for the view of the river, sailboats, and bridges. It might take a girl raised in the land-locked-tumbleweed-desert-of-Utah to love a place like this so much. There is really nothing to do but walk around or sit on a bench and stare. But I could stay for hours.

Photo Time:

Loved this graffiti! Defacing public property in a "nice" way. It makes me smile.

These downtown buildings look just like those in Isiac's older video games...he'd call them "simplistic graphics." And the electric rose - Portland is dubbed the "Rose City" but I rarely see roses around town, so why? I'll have to Google it.

The kind of bridge that move up and down for large boats and things.
Walking under this bridge is cool...steel grates are all that separate you from racing cars. And the noise is a loud roar.

He's trying not to smile.

Contemplating if she'll live...in a van, down by the river! (couldn't resist -- ode to Chris Farley)

Super happy or high on toxic river fumes?

We passed really cool murals on the side of a building. Mindy loved the drunken owl.
(no comment)

You can see the thrill Isiac had when he saw the rockin' monsters in this mural.

(would it cause him physical pain to smile on queue for me...really?)

My mom took us all out to dinner -- an early Birthday for Brandyn. Isiac had lobster tail. Brandyn had trout. I ate too much and forgot to take pictures. I blame the clam chowder.

Isiac and I have decided all our family should move to Portland.
End of discussion.

Easter, A Long Story

2010-05-04T22:20:00.000-07:00

Easter, 2010

A Hale tradition is getting everyone together to color eggs the day before Easter. It was just (sis-in-law)Jen's family, Isiac and I this year. Brandyn worked until evening and the rest of the extended family had things going on.

But we didn't have an empty house...Jen brought her four children and her huz, Larry.

Good times: eating pizza, dying eggs; decorating sugar cookies; setting the house on fire.

I should introduce the kids. Jen has the most children of Brandyn's brother's and sisters. She's had five gorgeous babies and is expecting another this year. I often watch her, holding one child while another pulls at her leg and am impressed at how calm and happy she is.

We weren't much competition in number of children, with having an only child. I do like to think we bring more to the table with Isiac than just one though. With his many sides, he adds up to at least three, I'd say.

Anyways...

We have Dominic, preparing the dying station. He's a cool kid.

Josiah was totally into the bright colored dies.

Christian made some cool puke-colored eggs. They looked pretty great with the camo stickers...the traditional military-theme- Easter.

Gabrielle had such a serious face. She makes very cute serious faces.

Behold The Eggs...

Cookie time!

To which Larry, Jen's husband, is a master cookie decorator. He went to town on those cookies. Jen made some fabulous creations too, but it's expected because she's creative and...she's not a dude.

(love ya Larry!)

The Fire...

Jen, Larry and I let the kids play while we finished decorating cookies. As if we could get away with doing something leisurely without disaster striking. What were we thinking? So we hear this beeping sound and I tell Jen it's sounds like the horn on Isiac's power-wheelchair. The beeping keeps going and I just sit there thinking "how strange." So a few more events and some yelling happen while I'm wondering who's playing with Isiac's chair. And long story short...one of Isiac's toy baskets had caught on fire. In his closet. While Josiah was standing next to it. Good thing Larry was there - he actually picked up the basket of fire and ran it out of the house.

I stayed sitting at the table for a long time after Jen and Larry had gone to save the house. I didn't catch on to the fact the beeping was the smoke detector until Larry ran out the door...carrying fire! Not my greatest moment.

***********************************************************

This was the end of Easter, 2010. Isiac was sick of posing for the camera; I was disheveled and tired; Brandyn was stuffed from holiday food. We had fun.

It was a good Easter.

Cherished Memories (or not?)

2010-03-30T21:34:00.000-07:00

I bought this hoodie way back in 2002 at the Winter Olympics. I haven't worn it in maybe two years, I'd guess, based on Isiac's comment:

"Hey Mom, I remember going on that trip with you to Canada when I was really little."

"That's a neat memory but we weren't in Canada."

"Yeah, where that Olympics' stuff was."

"Um, that was downtown Salt Lake City."

Looking at his face, I knew I had just totally blew his mind. To help him feel better, I offered this consolation...

"But I'm sure it was as cold as Canada that day."

It's hard being the parent and tearing apart childhood realities...Santa, the Easter Bunny and now Canada.

Decompression Mode

2010-03-29T17:16:00.000-07:00

Back in November, Isiac had his bi-yearly appointment at Shriner's. They took x-rays of his spine after the Orthopedic doc (not our usual guy, by the way) had a look at him.

When the x-rays were done the doc came in Isiac's room, followed by a mass of wide-eyed residents. Turns out Isiac had developed a 20% spinal curve, as is usual for DMD boys. While Isiac was entertained (distracted), the doc had me follow him into the hallway so I could see the curve for myself.

The doc's voice turned into indecipherable noise as technical terms trickled from his mouth. Dozens of eyes watched as I took in the scope of what was hanging on the illuminated wall -- deterioration of my son's spine, in black and gray tones. Was this training for these people, I wondered, or just cruel curiosity?

My first question was if he was in pain. He wasn't. However, the doc said he would need surgery "within six to nine months." They were going to put a rod in my boy's spine and fuse it all together.

Since he was not the Orthopedic Surgeon at the hospital, I would need to come back and speak with the surgeon (he, who happened to be our regular guy) to get details and set a date.

Last Friday, after a reschedule and months of waiting, we had our consultation. Turns out, our regular doctor...the Surgeon/more knowledgeable doctor on the subject said Isiac can wait a couple of years. He gave us more information about the surgery and told us how long we can push the waiting limits.

Now, after months of holding ourselves in constant tension, Brandyn and I feel like we're recovering from a car crash. How days after the crash, when adrenaline is winding down, there's those awful body aches from the bashing and bruising. I guess we're in tension-decompression.

Note: Thanks for Brandyn's dad who came with us for support. He pushed Isiac around the halls and waiting room while the doc went into details that would have been way too much for Isiac to hear. You're a trooper, grandpa!

Relating...

2010-03-15T21:55:00.000-07:00

There's this new television show on I-don't-remember-what network, "Parenthood." It has a great ensemble cast with people from shows I've liked in the past.

In the first episode, what seems to be the main character's son is having trouble at school. When he and his wife were called in for a meeting with the school - and on a side note, the dad kept bringing up how the boy would not take off his pirate costume (too familiar) - I knew where the show was headed. Asperger Syndrome.

It was interesting to see the reaction written for these parents, blind-sided with unwelcome information: denial, shock, sadness about something possibly wrong with their son.

Isiac was just a year younger than the child on the show when he was diagnosed with Asperger's. Our reaction was so different. We sought out a diagnosis, hoping for a label to sum-up the totality of Isiac.

Asperger's has not been an easy thing to deal with. Though from the many, many evaluations since he was 4.5 yrs old, we have grown to realize he is much more complex than just that one label.

Back to this new show...the second episode I watched delves deeper into the feelings of the parents and extended family of this boy who is now confirmed to have the syndrome. I was unexpectedly hit with emotion while watching and not about Isiac's Asperger's, but about his Muscular Dystrophy.

I could relate to the dad's heart break over what his son "might have been." Who would Isiac, with his unique and complex mind, become if it were not for this monster called MD?

I remember when he was just a few months old...I, still stunned from sleepless nights filled with colicky cries and the new reality of time no longer being my own, felt a deep sense of protectiveness. Then Columbine occurred. As I watched coverage of the grieving parents, I thought about how much work, sacrifice and love goes in to raising a child. How uncontrollably angry I'd be if someone took my son's life after of all that giving -- putting my soul into helping shape my baby into a person.

Well, that feeling I had the day of Columbine now resonates in my body daily. Muscular Dystrophy has dared to come in our life and say it will take my son.

I can see parents of children with other diseases, syndromes, disorders feeling something similar too. There is something uniquely stifling about knowing your child, who was once your baby with an anything-possible future, is now limited or changed or put on a path not chosen.

One might think my thoughts regarding disease incredibly immature. They might be. But this show...there's something about it that makes me feel like less of a wuss for feeling like I got punched in the gut. I think I'll keep watching.

I Need To Sound-Proof My Thoughts (tinfoil hat maybe?)

2010-03-12T19:49:00.000-08:00

So far 2010 and I have gotten off to a bad start. One or all of us in this family has been ill, minus a few weeks, for the whole year. The past six weeks have been the worst, with all of us in various states of debilitating illness.

I must have put a hex on us when, just after New Years I thought we had passed the cold & flu season. Maybe a day after I had that happy thought - POW - Strep Throat. My whole family punished, just for one optimistic thought - Come On!

Listen, Universe: This kind of betrayal from Optimism solidifies the cynical side of my personality. I might become a bitter, scary old woman and that's just not good for anyone.

But really, there's nothing new about illness in this household, right? What is new and shocking is my rapid deterioration into becoming a Frumpy Housewife. I went through this on a small-scale in winter 2008, but this time it hit full-throttle. Except for a few - maybe three - occasions, I had really let myself sink to a new low.

The no-makeup-shower-optional-pajamas/sweats-and-slippers marathon was interrupted when (thankfully!) Brandyn's dad came over to watch Isiac so Brandyn and I could get out of the house for a couple of hours.

Our date was going on an errand to Ikea - because we're romantic that way.

So I did my hair, put on makeup, and... Oh My Gosh - Mascara! Thank you, inventor of mascara! Your ingenious black goop transformed my eyes from sunken-eyed-alien-zombie to green-eyed-human-girl.

I had to commemorate the miracle -- the mascara and leaving the house -- with a photo. And since Brandyn wasn't close by, I grabbed my other favorite guy...Isiac. He agreed to smile because he was happy Brandyn and I were leaving the house (very, very happy).

Thus, 2010 began to not suck quite so bad. But I won't tempt fate by thinking optimistically or having a sunny outlook on the rest of the year. I'm just gonna take good times as they come.

I've learned my lesson, Universe.

Essay, Part 1

2010-02-25T21:57:00.000-08:00

Isiac came home last week and said he had written an essay...

"What? You wrote an essay?"

"Well, my teacher wrote down what I wanted to say."

"What did you write about?" (this being his first essay)

"It's called My Life with Disease. My teacher said she would send it home tomorrow."

So here are some well-thought-words from Isiac:

Once upon a time, in my life, in the year 2006, I was diagnosed with Muscular Dystrophy. I was only seven years old. I wish it would go away. Now, I'm sad that I can't walk. I have a dream that someday there will be a cure. I'm really scared about what could happen to me and I hope that I will make it. I have a dream that all kids and everyone else with Muscular Dystrophy wouldn't have to live with the disease. Listen, my friends, I am really worried about this. Hang in there, stay strong, and hopefully one day there will be a cure. In the meantime, know that you are not alone. It is part of us but it is not who we are. Even though it is difficult, we can still be happy.

Sincerely,
Isiac

I'm officially impressed.

The optimism voiced in this essay he often reflects at home. It's good he feels this way...I'm elated he feels hopeful. For us (his parents) optimism is complicated -- that hope he holds innocently and speaks of so often can often make my heart hurt.

I know the reality of DMD - the reality is not hopeful and it is not kind. A cure for DMD is years away. Too many years. And there's no way we'll tell him -- we can't do that to him. What I can do, for now, is reflect the optimism and hope that I see in him. Because he needs me to "still be happy."

*The parts in bold were underlined in his original copy and, he says are "very important points."

From The Back Seat

2010-02-23T21:35:00.000-08:00

I ride in the back seat a lot lately. When we all go somewhere together, that is. Mainly because it's much easier to transfer Isiac into a front seat of a car - the larger door and a seat with more foot room - so why make things difficult on ourselves? However, I have a life-long hatred of sitting in the back seat and a propensity for motion sickness.

Suffering aside, I've found a good thing in being ostracized to the back...the view. I watch Brandyn and Isiac as they groove to the car stereo. See, they share taste in music so when some glaring-guitar-hard-rock or hip-hop-half-rap slams through the speakers, it seeps into their souls and releases their front-seat-dancing beasts.

I should have caught this on video instead of still shot (maybe next time):

This is what happens when we are forced to sit in line at a the Krispy Kreme drive through. The radio gets turned up to stave off boredom. Then, the Black Eyed Peas...

	The Black Eyed Peas - I Gotta Feeling .mp3

	Found at bee mp3 search engine

Brandyn opens with the "Finger Point." One of his more infamous moves.

A couple of smiles and head bobs...

Hand-Tappin to the beat.

I'm the odd one in this family, with the my narrow minded music taste. I do admit liking some Black Eyed Peas. Sometimes I need a good car dance too

(even from the oppression of the back seat).

*Sorry for the grainy pics...did my best with my phone camera.

The First Step Is...

2010-02-10T12:24:00.000-08:00

Admitting I have a problem. Hello, my name is Jennifer and I have an addiction to moving.

I mentioned in a previous post we had moved. Again. I haven't yet given the details of this move, which happened the first of November (09) because I can rationalize this as not a move. You see, it was just a shift to the right a few blocks.

We had planned to purchase our former place, when the market stabilized and such. But my sister-in-law decided to move out of her home and live on Walton's Mountain (figuratively speaking). So then our plans changed.

My sister-in-law (who shall further be referred to as Amanda) had a better home with more room. Plus...Plus, we were able to convert a space into a handicap accessible bathroom. This was through the help from: a very giving person Amanda knows; Amanda's husband, Mike, who has a big heart and a knack for wiring; and Amanda herself putting in long hours and hard work.

There was also help from two fabulous ladies I know. They bought supplies and offered the free labor to build a ramp Isiac needed to get everywhere in the house. I don't think I have thanked them enough.

Brandyn and I did a couple things too, but nothing compared to all that was given.

It's taking me a while to feel at home in this new space. It has to be a side effect of moving so much the past 14 years - rarely making a space my own. The other day, I came in from a grocery trip. Tired from people, traffic and rain, I took my shoes off and threw them in the closet. Wiggling my toes against the floor, I felt that homey, at-ease comfort. It felt good - having a place where I not only occupy but where I belong.

Meeting - Schmeeting!

2010-01-27T18:15:00.000-08:00

I admit to being a wimp in dealing with life lately. I'm giving myself allowance to be so for a while. I even became so bold as to not attend the latest school meeting concerning Isiac. But it was the meeting to make sure Isiac still qualifies to receive special ed services. And at this point, really...there are questions as to Isiac's needs of services at school? Can't we just give him a "yes" stamp for life (since his qualifying conditions will never be going away)?

*print taken from rughfamilyworkshop.com

So I just received the huge packet, from the missed meeting, of all the specialists' assessments of my son. I only read about half way through the packet. How much am I supposed to read about the shortcomings of his behavior, cognitive progress, physical strength and agility? It's like reading a list of his faults. This is why I did not attend the meeting...what mother needs to sit through all of that and then agree? Not me.

I'd rather be at home with Isiac. Like today we watched what I think is a hilarious series on the History Channel - "Life After People." The show supposes all people will be eradicated from earth at one time, leaving all surroundings untouched. So it gives an accounting (very dramatically) of the disasters that will occur with no people to maintain earth.

Isiac gets so into this program, especially when the show gets to the "40 years after people" and beyond point. "The destruction is just too amazing!", he says.

I'm going to spend my time as a specialist gathering data on the good things and strong aspects about my son. That's a meeting worth my time.

This, Here, Is Broadway Caliber Drama!

2010-01-08T21:40:00.000-08:00

So Grandpa Hale came over to hang out with Isiac this evening. He brought Isiac's cousin, Dom, too. Today was one of those days where I needed someone to visit Isiac. It hadn't been a bad day, just overly dramatic and my brain needed a rest.

Just for starters...Isiac stayed home from school today because one of the breaks on his wheelchair tires wasn't tight enough. Not safe for the bus lift. I said I'd drive him to school but that was Not OK with Isiac. The routine had been demolished in his eyes, so why bother going to school? Why bother with anything? Insert angry eyes and fist shaking skyward.

How did this child become so dramatic? (don't answer, Brandyn)

Another example -- the other morning, I was lying in bed and heard Isiac scream...

"I will not tolerate this."

A few seconds later,

"This is absolutely intolerable!"

So I get up to see what's going on and Brandyn explains Isiac was upset because he wanted hand sanitizer for his hands. But before he gave Isiac hand sanitizer, he had lifted him to his chair. So Isiac thought being moved with unsanitary hands was an egregious offense.

Kid needs to relax.

Life with Isiac is never dull. Grandpa (Steve) is not afraid to get into the drama with Isiac...the fun drama. Isiac's latest thing is the Military, circa WWII. I like this photo because it shows what a great sport Steve is, wearing Isiac's army hat. Also you can see how intense Isiac can be. He is Wolverine here - Wolverine who enlisted in the army, as a secret weapon against the Germans...of course.

At Least I Can Say I Got It Done This Year

2009-12-31T19:19:00.000-08:00

Since I'm so behind in posts - major life events and such - I am going to keep the words to a minimum. Also because Isiac and I (and, really, much of the Hale family) are having a bad day.

And because I feel lazy on this last day of 2009 -- the year diabetes smacked my son in the face and all-too-soon made him wheelchair bound. 2009, you kinda stunk.

Note to 2010: Be a kind year.

On with the pictures...

Isiac comes up with unique ideas, out of the blue. He held a Spore (computer game thingy) movie night. An exclusive, held in our office.

Brandyn helped write and post the sign...movie times were all Isiac. We're still not sure what he meant.

Way to be creative, kid!

Sometime in August, we went to the annual Starlight Foundation's day at the zoo. A day we get in the zoo for free, plus drinks and popcorn. Yay for free stuff!

I took this picture because I thought it would be funny in our front yard. *I can be a bit lame sometimes, I admit.

This zoo-pic is for Nate (bro-in-law) - proof I wear the Aboriginal Taiwan-eese (?) pouch he gave me. It's about eighty times lighter than my purse. I carry around a lot of stuff in my purse cause you never know what you're going to need (I blame my Grandma Stoddard for the mental programming on that one)

See the Monstrous Torture Brandyn inflicts on Isiac? Tickling his neck and squishing his face until he can't catch his breath from laughter and begging for mercy. This happens pretty much Every Day -- No Joke, Y'all!

I'm smiling here, cause we're about to leave the zoo
(cause sometimes animals just plain smell).

My mom came for a visit, late October. One of the ways she's cool is that she'll take Isiac for a walk several times a day. He loves that! Thanks, Mom!

Yep, he's wearing his pirate hat on the walk.

Isiac was way happy for Halloween

(what he's upset about here, I don't remember but I get this I-am-not-happy face every day. So funny).

My mom Saved Halloween (thanks for that one too, mom). First, she helped him with a costume (hat from Disney land, 2006). She then took Isiac Trick-or-Treating and he had tons of fun. He didn't care so much about the candy, just being around the other kids and talking non-stop to passers-by.

In November, the best month ever, Isiac turned 11! We had the party at Grandma Hale's house -- Brandyn's mom. She made a huge dinner and everything. (Thanks to Grandma Hale for saving the birthday!).

At this point, I'm sounding like I do nothing for my child. I did buy the cake and candles...I'm not totally useless.

*Right before Isiac's birthday, we moved.

Not so much moved, but shifted to the right a couple blocks. I'll get to those details next year*

Christmas Eve dinner was at our house, which used to be Amanda's house (my sister-in-law, who is the best at dinner parties and, well, everything else... big shoes to fill). In spite of my hosting anxiety and our house in semi-reno mode, Christmas Eve was great. Having a house full of people we love was like medicine for a day.

We didn't get a family photo on our own camera so I stole this photo off my other sis-in-law, Jen's, Face Book page.

It's a small photo and not so perfect -- somewhat like our family. With all our quirks, flaws and bad days, I wouldn't trade our family for anything. I'm kind of attached to these guys.

That concludes the year-end picture marathon. If you got this far, you're a trooper! Love to all and Happy New Year!

Chutney

2009-12-20T01:01:00.000-08:00

Today, while scrubbing a spot out of the carpet, I was thinking back to this online rate-your-stress-IQ test I took a few years ago. I remember thinking it would be very accurate because it was in a medical magazine in my doctor's office. I didn't score as high as I thought I would (which then made me question the reliability of that medical magazine).

What I remembered most was the question about "putting things off." A multiple choice question, asking which is the more stressful: to put things off or do tasks right away. I thought, for sure, the correct response had to be to put things off (hopefully until the problem just goes away on its own). I was so wrong.

Turns out the less stressful way to live is to tackle things as soon as possible. I tried to be in denial about it, but then I tried this theory -- which was clearly made of bologna -- and it did make me feel good, relived in a way, to get projects checked off my list quickly.

Lately, having that shining kernel of wisdom has made me feel just awful about myself (darn kernel). Life here, lately, is a bit of a quagmire and I would call it a good day if I accomplish more than one thing. Case in point: This Blog. It hasn't been updated for almost two months (though I think about it daily -- does that count? No?). That's two months of un-captured moments in my son's life. I should be flogged.

There was my mom's visit, Halloween, moving to a new house (don't even ask), Isiac's birthday, Thanksgiving, our 14th anniversary and now holiday stuff. I will get to all these things...but right now my brain is chutney (the jelly kind, not the yummy salsa kind). I need a peaceful minute or two so my brain will turn back into electro-conductive gray matter.

Grey And Green And Scary Things

2009-10-25T20:48:00.000-07:00

There are many things Isiac is afraid of (he may get that fear-thing from me). He takes his fears to the point of obsession - no surprise there, if you know my child (yes, Brandyn...I'll admit he gets a bit of the obsessiveness from me too).

But it got a bit weird when his obsessive fear began to erode his trust in me. Me, his MOTHER.

It began with a bad dream. He woke up yelling and when I got to his bedside, he told me about this monster he called "Grey Mommy." Huh? I get his description of a grey-faced-witch-lady being a nightmare...but why call her "Mommy?"

He had this dream months ago and he still brings up "Grey Mommy" as if she's absolute horror.

'My son thinking me a monster' theory was about to gain further proof. Brandyn was working late (as usual), I put Isiac to bed then went about doing whatever (this is my nightly thing... doing whatever).

Isiac yelled from his bed "Mom, are you a Zombie?"

Long pause while I processed the question. "No"

"OK." Then he fell asleep.

This became a nightly question. "Mom, are you a Zombie?"

So alright, it was funny. But the mom-psychologist side of me wondered if my son thought I was a monster inside, since it was just me he saw as scary.

A few weeks later, when Brandyn was home, Isiac had been in bed for about thirty minutes then out of the silence...

"Hey You Guys, are you Zombies?"

In sync we yelled "NO...go to sleep" and smiled at our crazy life. I smiled a bit longer at the relief of no longer being the only monster in the house.

Google Has Become The Step-Mother

2009-10-17T15:10:00.000-07:00

The things Isiac becomes interested in...they become a part of our lives like a family member. Like the way Buzz Light Year became Isiac's Uber-Cool-Space-Man Uncle (that is, once Isiac understood he wasn't Buzz. Long story). He lived with us as a toy, on clothing and dominated our television screen every afternoon for months on end.

I can better tolerate the now ever-present love of Star Wars. There is more than one character, several movies, cartoons and an almost infinite number of action figures. Anakin Skywalker and Captain Rex (the Clone) are like second cousins to Isiac now. Plus the story complexity keeps me from poking my eyes out. Which, by the way, I'm proud of not doing when Isiac was four and was into Toy Story. He would rewind, over and over and over, the gripping scene of Buzz Lightyear jumping from the neighbor's up-stairs railing, thinking he could fly, only to fall to the floor in disappointment (it hurt my mind to recall that scene long enough to type it out).

Now Isiac's new interest/obsession is, well...I don't know how to deal with it. History. How do I deal with something as huge as history? At first, he just wanted to know what year things were invented. Like ketchup. So we'd Google it and we'd have a fun thing to do together. Then, he wanted to know facts about certain decades, such as the 20's. Again, we'd Google it and learn some cool stuff.

Now he wants to know details about centuries...ancient times. "What did people do in the year 400BC?" I didn't even Google that one, I just made something up - "They made pottery."

He has also turned his interest into almost constant questioning:

"When was peanut butter first made?"

"What year was the airplane thought of. Not made, but thought of?"

"How did people fight war in the year 1400?"

"Which came first, the Bow and Arrow or the Sword?"

"Were the Dark Ages the worst time on Earth?"

"Who made the hammer?"

"Why don't the Police just use little machine guns like those bad guys did in the 20's?"

AAAAAAAAAAAHHHH!
*that's me screaming in my head*

I don't know the answer to everything in history! I have to admit - Sometimes a search engine is the more intelligent parent around here.

The barrage of questions has lowered me (for the sake of sanity) to answering him with a question of my own. He'll ask me some off-the-wall, out-of-the-blue thing and I'll say "Isiac, what am I not?"

He'll smile, roll his eyes and say "Google."

Seeing A Silver Lining (Not Hallucinating, I Swear!)

2009-10-10T23:06:00.000-07:00

All our twists and turns these past four-or-so years have taken us, in my opinion, somewhat backward in life. We're in our mid-thirties but there's this de-ja vu thing going on...career wise and in other aspects, we're right back in our mid-twenties.

Brandyn is now re-climbing the career ladder from the bottom up. I admire him for this. It takes patience and an ability to swallow a lot of pride reporting to managers who have far less experience than he does. I couldn't do it...I'm impatient, defensive and mouthy (good thing I'm not exposed to the general public on a daily basis. We'd probably be sued by now).

Here's another piece of info about me. I have what I call "Phone Phobia." I rarely talk on the phone, it causes way too much stress and panic. I know how weird this sounds. Many people have told me how weird this is and nobody "gets it" at all. Until the other day...Since Brandyn is back out on the cellular sales floor, he meets tons of interesting people (strange, creepy and angry people too).

Yesterday, Brandyn sold a phone to a lady who asked for a ton of extra text messaging added into her plan. She mentioned she texts more than she talks on the phone. Brandyn, being married to a ~~crazy~~ phobic person, picked up on that cue. So Brandyn asked a few questions and they swapped phone phobia stories. She laughed a bit at herself - Brandyn laughed, more than a bit, at the absurdity of me.

When Brandyn told me about meeting her, I was shocked to hear someone had the same ~~level of insanity~~ problem as I do...especially since nobody has ever thought it a rational thing. I wanted to meet this chick! Then I thought it would be a bad idea...we could never be friends since neither of us would call the other. Oh well.

But what a nice surprise -- Brandyn's drudgery on the cellular sales floor led to a serendipitous meeting of my brain twin!

I Blame The Swines

2009-10-06T21:24:00.001-07:00

There has been constant illness in our house for at least three weeks now. Brandyn came down with something really bad and after a week he gave in and saw the doctor. He had the FLU!

Isiac had his Flu shot two weeks before. However, there's always a tiny chance he could still get the Flu and it would be bad for him. Really Bad. So we dodged a bullet when just Brandyn and I got sick. But then our Flu turned into Bronchitis and there's no immunization for that. So of course, Isiac got Bronchitis.

Now we've all been sick for so long and the antibiotics didn't make Brandyn or Isiac completely better. So I'm thinking they might have the dreaded Swine Flu. That immunization wasn't ready when Isiac had his Flu shot. He just had the basic shot...no pig juice involved.

But seriously, if Isiac does have the Swine Flu (which has been renamed H1N1 as to not offend the pig population), I will never eat bacon again!

Needing A Pound Of Bravery & A Case Of How-To-Deal

2009-09-21T17:35:00.000-07:00

We took Isiac to the doctor last week. Like many, many doctor appointments, he had to have some blood taken. His arms have tiny veins and he always has to be poked and prodded until they can find a "good one." This last time, they gave up on the arm and took from his hand.

During all this, I was distracting him from the pain (or trying to). I had a flashback and told Isiac about the first time I had blood taken. I was in 6th grade and needed to be checked for Mono. I cried, screamed and kicked the nurse away. I remember feeling my civil rights were being violated and telling the doctor he "couldn't take my blood!"

Isiac got through all the needle pokes and had a little laugh at the 11-year-old me.

Today I was thinking back to the first time Isiac had to have blood taken. He was seven. When I told him about the appointment, he put his face on my arm and told me he was scared. He cried just a few tears. At the actual appointment he yelled a bit and resisted giving his arm to the nurse. But he was a champion compared to the young version of me.

I have to give Isiac the credit he so completely deserves. Because I think he surpasses me in bravery even now. In thinking about how I deal with Isiac's life - all he's been given (or what's been taken away) - I might still be that 11-year-old girl because in my mind I'm crying, kicking and screaming about how this isn't right.

Who Knew Guitarists Go To Beauty School?

2009-09-21T16:56:00.000-07:00

Before school began, I took Isiac for a hair cut. We go to the cheap-o chain salons, where you get any stylist available. I usually hold my breath during these haircut sessions...Isiac sees them as high-level torture and will loudly object to the abuse.

I stand right next to him as he gets his hair cut to keep him as calm as possible. I can see when he's about to loose it and go postal because there are hair remnants falling on his face (the inhumanity!).

So this haircut before school...We walk in to the shop and our appointment falls to this stylist who looks like he has no place, whatsoever, in there. Turns out he's in a band makes extra money cutting hair. Isiac had an instant guy-crush and wanted to be his BFF when he heard the dude played guitar.

For the next 40 minutes Isiac showed a side of himself I've rarely seen. He had this amazing conversation with the guy. They talked about bands, songs, drummers and guitarists they like from different rock bands.

I got to see Isiac's passion for music. All that information he has in his mind - I had no idea he knew so much. I got to see a bit of his independence, thoughts, life and love apart from me and Brandyn. Basically I got to see a glimpse of him growing up. And I loved it.

Best haircut ever.

Meetings, Music & Math

2009-09-13T01:03:00.000-07:00

The week before Isiac went back to school, I went to his IEP meeting. This is basically where everyone who works with Isiac during the school year sets goals for him. These meetings are long and somewhat tedious but necessary.

During the math section of the meeting, there was a debate on whether Isiac needed to have double-digit addition committed to memory before moving into multiplication. Since he's not at grade level in math, some wanted him to move right into multiplication. I pushed for memorizing addition first because I relate to being mathematically challenged.

In second grade, I never memorized my times-tables. I still don't know them all and I'm in my thirties. It can be a problem but I deal with it (calculators). For example:

The other day, Isiac asked us to burn him a new CD for his bus ride. I promised I would do it that night. It was really late when I remembered about it but I promised, so I turned on the computer and Brandyn sat on the couch playing a video game (giving me moral support I guess...he's great that way).

So I selected the songs and pushed burn. The read-out at the top of iTunes showed the first song and seven minutes. I turned to Brandyn and in a defeated voice said "So, I guess I'll just go to bed and hope this burns by itself, with no problems."

Brandyn paused his game (small miracle!) and looked at the computer "Why? It will be done in a few minutes."

I turned back to the computer with a smile. "Oh, so that's the total time, not the time per song? Because there are 14 songs and I don't know what 14 times 7 is but I know it's a lot."

Then I had to laugh at myself for saying that out loud.

So yeah, teachers...get my son to the point where addition is tattooed in his mind. It would be tragic if years from now I hear him say "I don't know what 20 plus 6 is, but I know it's a lot."

Last Minute School Time

2009-09-08T14:20:00.000-07:00

Isiac started school today. Fifth grade.

It wasn't until last night, around eight, that I did his back-to-school shopping. The two hours I was out shopping I was thinking "What is wrong with me, putting this off until the last minute?"

What made me feel even more incompetent - the school supplies were sold out. I couldn't even find a pack of pencils! I asked if there were school supplies in another area of the store and got a sneering, judgmental look from the teenage clerk . Because I was stressed (and moody) I almost gave her a few words on how complicated grown-up life is, especially parenthood.

But whatever. I can get school supplies when they are re-stocked and life will go on. And that little blond girl will someday know the amount of brain power it takes to be a mom.

Not Termites

2009-08-19T01:11:00.000-07:00

A while ago, I noticed a clicking sound in the ceiling. At first, I only noticed it at night when sitting on the side of the couch near the window. So I thought it was rain. Then I realized it hadn't rained for weeks.

What in the world was that noise in the ceiling?

After a lot of contemplation on weird noises, I came to the conclusion it was termites. I then sat on the other side of the couch for a couple of days just in case the ceiling caved in.

Then when Nate (bro-in-law) was in town, He stopped by and happened to notice bees (many, many bees I never noticed...right by our front door) flying in and out of a crack in the dormer.

This made way more sense than the termite theory because I had just Googled termites and the found out their clicking noise could only be heard with some sound amplifying device. (which I tried to ignore, thinking we had really good acoustics in our ceiling or something).

So Brandyn went to Home Depot to by some pesticide. He came home not only with two cans of spray but also his version of a bee-keeper hat (netting from the fabric store).

He posted this on Facebook - his plan of climbing in the attic and attacking the hive...I guess so if he was wounded in battle, people would at least know of his bravery and smart fabric choice.

I love this Facebook response from his sister:

"You are out of your freakin head! Like Dad said....post pics of you in your white-trash-honky-bee-keeper-halloween costume for our amusement. Nothing that some netting and a can of Wasp killer cant fix, Jethro!"

Behold the Yellow Jacket Terminator (as he likes to be called).

I have to say, I can't disagree with his sister's description of the outfit (and she hadn't even seen him in his full bee-killin' outfit yet).

Classic.

Fundraising and Awareness

2009-08-17T16:52:00.000-07:00

I used to be attached to the computer screen, reading everything I could about Duchenne Muscular Dystrophy. That first year after Isiac's diagnosis, I dove in to the pool of information trying to find hope. I eventually climbed out of that overwhelming pool and accepted the course of an unstoppable disease.

But that is our story. There are other stories, there is hope - for boys who are still young and who are yet to be born. There are scientists dedicated to finding a cure for Duchenne. Cures that are so close but still years away from being viable. I believe science will catch up to this disease someday.

One foundation dedicated to finding a cure is PPMD. I read their news feed, from time to time. This video about an upcoming event is pretty great. All the boys in the video have Duchenne - putting a face to the disease.

Identity Crisis

2009-08-08T18:25:00.000-07:00

Excuse me while I work on the blog. It might be all messed up and weird looking for a while...a long while since I'm not a graphic designer or anything close.

Plus, I changed the title. Twice.

Don't freak out, we're still the same family. Although I've always thought it would be fun to change my name. Of course, I may end up hating that name and want my old name back.

Maybe I'll just get a little tattoo instead.

*Just kidding, Mom.

Update: I think I'm done. It's blue. It's white. It's simple. It's good enough (for now).

The 4th Of July, Uncensored

2009-08-08T12:34:00.000-07:00

The 4th party was at our house this year. We had barbecued turkey burgers, a jello salad, chips, pop and watermelon...because we live dangerously with our party food!

The party really got going when the fireworks started:

Not a real grenade. But almost as dangerous!

Don't be fooled by the lounge chairs and Brandyn's relaxed look. See that gun Isiac has on his lap? Oh yeah, don't mess with our party!

The first of the fireworks were so out of this world (the colorful smoke bombs), Isiac was moved to salute.

Isiac livin' on the edge, lighting a fountain of fireworks!

This is sis-in-law Jen's son. Don't be fooled by his incredible adorable-ness. He parties like a lion!

After a while, things got really crazy. This is Nate running around, like a mad man, with a sparkler!

Then a jumping-higher-than-the-fireworks spree began. If that doesn't say party, what does?

OK, this is Jen's husband, Larry. He has mad jumping skills. Beyond words.

Brandyn didn't jump, he went for the fireworks-shooting-out-the-bum look.

I think it's a tie between the three guys -- all party worthy shots.

Eventually, the adrenaline of our totally wild party wore off. Then I got this shot of Nate holding Jen's baby, Gabrielle (so cute!).

That about sums it up for the 4th 2009.

Bear With Me As I Dredge Up The Past

2009-08-08T10:57:00.000-07:00

Years ago, my bro-in-law-Nate, my sis-in-law-Jen and I all rode to work together.

Being an avid morning hater, I liked to contemplate my contempt for being awake on the morning commute.

Nate, however, liked to sing. He sang along with the radio or just part of a song in his head. He even made up songs- like about a road sign he would see along the way (Who is that happy in the morning?).

This cheeriness did not bode well with my morning petulance. I told Brandyn how rude Nate was. Brandyn thought it was funny I was being so "tortured." Then he, of course, told Nate. Then Nate sang even more. I think they were trying to kill me.

(What I know now: Nate has a nice singing voice. I still hate mornings, but with less passion. I was a tad over dramatic when I was younger and Brandyn was due a laugh at my "pain" because he put up with my drama so fantastically.)

All these years later, Nate is one of the people I care about most in the world. He's a great brother to have.

He came for his annual visit, from Taiwan, in July. It was a nice time and we'll all be incredibly happy when he moves back (no pressure there Nate).

Love ya, Nate Guy.

Holy Moly, July!

2009-08-05T23:43:00.000-07:00

Here in Portland, spring was long, cool and wet. I often wondered if summer would ever arrive. Why did I wonder such a stupid thing? As if I yearned for the harshness of Summer? I must have sent out bad Juju into the universe.

Well, summer came in July. It came with all the blaze and inextinguishable force of the sun. We had near record days of high temperatures in Portland ever!

Seeing that we lived in Texas for a year, you'd think we could take the heat. But, you see, those Texans have air conditioning...everywhere. Here in Oregon, the land of "Sweat it out for a couple weeks, who needs air conditioning?" not every home is equipped properly (as I ranted about last year). And during the heat assault, it reached 107 and all we had to fight back with the was our tiny AC window unit...in the kitchen.

We hardly slept for days.

And our lawn is pretty much dead.

Feel free to shed tears over our suffering.

P.S. There were a few good things in July. I'll get to those later.

Butterfly Wishes

2009-07-23T17:04:00.000-07:00

There is this big, plastic butterfly Isiac has from when he was four years old. A friend of mine let him take it home when she noticed how attached he was to the thing. He named it "Bem Bem" and completely loved it for a couple of years. It has since been packed away, with the rest of his "too-young-for-me" toys.

I was putting Isiac to bed the other night and, out of nowhere, he pretended to be Bem Bem. But he wanted to change the butterfly process - go back inside the cocoon and be reborn. So we both pretended to be inside a big cocoon then come out as new, awesome butterflies. It was a nice story.

It's been on my mind since then. When I was huddled beside him, in our pretend cocoon, I didn't really want to come out. I wanted to build a real cocoon around us. Just shut out all the things that don't matter -- the petty, sometimes ugly, things that make up the nagging noise of life.

I know I'm wishing for something idealistic that will never happen. I do that a lot. I'm a wisher. The mother in me wants to lie down, fold my arms around Isiac and wake up to a beautiful, perfect life.

I should keep my head in reality but then I constantly hear the noise: the weeds in our yard; laundry waiting to be done; feelings hurt and people forgotten in the mix; notes from school about behavior problems; muscles wasting day by day.

I'm a bit old to belive in wishes...and the truth of that butterfly with those bright, yellow wings - it will stay in that box, there is no magic there.

My Career Doesn't Come With Paid Vacation...Or Sick Days

2009-07-18T23:29:00.000-07:00

At lunch today, Isiac asked how many carbohydrates he's allowed to eat in one day. Since he's on a strict carb meal plan, I added them up in my head.

"You can eat one hundred and eighty carbs in one day."

"How many carbs can a person without diabetes eat in one day?" He asked with his serious thinking face.

"I don't know...probably about the same amount, I guess."

"Come on Mom, you're a nurse. You should know the answer."

"Isiac, I am not a nurse." I gave him a baffled look, confused he thought I had a nursing degree.

"Well, you're the House Nurse." As though it is an actual occupation and I am thoroughly qualified.

It did make me smile to know he thinks I am competent to take care of him. I hope that lasts into his teen years. You know, when kids think their parents know nothing (I hate that phase!)

Now, if I'm ever in the job market again, can I list "House Nurse" on my resume?

Typical Trip To The Store

2009-07-15T23:36:00.000-07:00

This afternoon I made Isiac a sandwich with our last two pieces of bread. So I sent Brandyn a text asking him to pick up two loafs on his way home for lunch. He works close to a Great Harvest Bread store and although their bread is $4 a loaf, we really needed bread (plus their bread is yummy).

But then Isiac wanted quiche for dinner and we only had three eggs. So I sent Brandyn another text and said never mind about getting bread...Isiac and I were going to the store.

(A bit of a side note: It takes some effort to go shopping with Isiac. I get Isiac in the car, break down his wheelchair, put it in the trunk then do it all in reverse when we arrive at our destination. Since I push Isiac around the store, I am limited to about twelve items or so...whatever will fit in the reusable shopping bag I hang on the back of his chair. I'm not complaining about taking him with me, it's just that we need an easier system.)

Mid way through the store, Isiac spotted a former classmate (an older boy,12 or 13). They talked for a bit then we went our separate ways. Isiac, not understanding social boundaries asked me if we could invite his friend over or maybe go to his house. I explained the many reasons why it wouldn't be such a good idea and I wasn't going to turn around and ask the boy's father for his number.

Oh, the screaming and crying! It was like I tore out his soul and stomped it into the gritty grocery store tiles, he was so distraught. I had to pick out the rest of our items in a huge rush because I knew this was not going to end soon.

So we paid for the groceries, loaded them into the car. Then I had to get Isiac in the car while he was still crying and angry with me (twice as difficult as when he is cooperative). Luckily, the drive home was quick. I got everything in the house and gave Isiac a hug, which calmed him down (I should have just done that at the store!). By then, I felt like I needed a nap...or a vacation.

After unloading all the groceries, I noticed something...
I forgot to buy bread.

One Of His Top 5 People EVER

2009-07-11T15:58:00.000-07:00

My mom came to visit in June. She was here for five days and it was great. She spends so much time with Isiac when she visits. It's amazing, the patience she has.

She helped me out so much that when she left, I was out of practice in lifting Isiac. I tried to lift him from his chair to his bed and I almost fell over "How did I do this before, Isiac?" Laughing at me, he said "We need Grandma to come back."

Racking Up The Bad-Wife Points

2009-07-11T14:54:00.001-07:00

I'm trying to do some catch-up posts, since I've been a huge blog slacker lately. So I was looking through our pictures for a shot of Brandyn on Father's Day. Then I remembered I took none.

That day, Isiac's glucose level kept dropping for no apparent reason. It sends a bolt of panic through me when his glucose level is low. Since this went on the majority of the day, I was pretty stressed out.

By the time we made it to the big family dinner, my brain was fried. But what kind of wife misses out on all those Father's day photo ops? Me, that's who! If only there was a way to upgrade my brain. I could use a few more gigs or maybe I need an external backup system.

I'm going to make it up to Brandyn by posting a couple photos of his 36th birthday.
(only 3 months late)

His super-cool brother-in-law got him a signed Michael Jordan jersey. And this is a face Brandyn makes a lot...pretty awesome, eh?

Instead of 36 candles, we used Isiac's Darth Vader candle holder. That would be a Storm Trooper mask Brandyn is wearing as he blows his candle out...he's cool like that.

Even though I have no photo of Father's day, I do have mushy stuff to say... you're a great dad, Brandyn, and I love you.

Morning Storm

2009-07-10T23:42:00.000-07:00

Summer school is now session. With Isiac out of his morning routine, he rages like a bear when we wake him for school.

The first day I wake him, he yells and screams the whole half hour until the bus comes. He even yells while he eats his breakfast (I didn't even know that was possible). He turns into someone else, during these episodes...doesn't really look like himself.

And of course, the bus is late so Isiac has extra reason to be frustrated. Anything that doesn't work perfectly, on schedule is just broken or stupid in his mind. I should let him in on the news that nothing works perfectly (but could he handle thinking everything is broken and stupid? Do I dare find out?).

Finally, the bus is here. His new, happy-to-meet-you bus driver gets Isiac up the lift and is securing his chair on the bus. Then I see him come through the morning storm as the anger disappears from his face. I recognize a new emotion on his face - fear - as he notices all the new faces on the bus. He looks at me with wide eyes and his innocence strikes me -- he looks fragile and timid as he says "love you, mom."

Nostalgia In Motion

2009-06-14T16:22:00.000-07:00

So as I said in this earlier post, we've moved Isiac around a lot. A. LOT. I am resolved to stop the madness and stay put for a while. Though, apparently, the damage has already been done.

Isiac recently got a free CD in a Happy Meal from McDonald's and it has this one song that really resonated in his ten-year-old heart.

The song? "Photograph," by Nickleback. The lyrics are basically about a guy looking back at his hometown and all the nostalgia of growing up...letting go of youth. The first time Isiac heard the song, he got teary-eyed (not kidding).

The parts that really "get" to him most:

"Every memory of looking out the back door
I had the photo album spread out on my bedroom floor
It’s hard to say it
Time to say it
Goodbye, goodbye
Every memory of walking out the front door
I found the photo of the friend that I was looking for
It's hard to say it
Time to say it
Goodbye, goodbye"

"I miss that town
I miss the faces
You can't erase
You can't replace it
I miss it now
I can't believe it
So hard to stay
Too hard to leave it"

He listens to this song over and over when we're in the car and while he's tenderly reminiscing days gone by, I'm just thinking "Dude, Nickleback is not that good a band." I am so cold hearted.

I filmed a short clip of this with my phone today:

I could have taken an angle showing the anguish exuded in his oh-so-expressive face. I just don't think the internet is ready for that much drama.

Letting My Nerd Out

2009-06-14T11:04:00.000-07:00

Way back when, I used to watch the original Star Trek (reruns, of course) on television in the late afternoons. I fell in love with the idea of living on a space ship and thought Spock was so great. My favorite thing of all time was the idea of being transported through space...so cool and such a time saver.

Then there came "Star Trek: The Next Generation." I loved that show. I'm pretty sure I have seen every episode more than once.

This is where I admit that I have this inner Science Fiction Freak inside of me. Brandyn and I recently saw the new Star Trek movie and thought it was amazing. I know this kind of stuff is not for everyone but when a 20-year-old kid who works with Brandyn said there was nothing special about the movie and even called it "hokey," I had to take a few deep breaths so my inner nerd didn't rage on the guy. My nerd side is very passionate.

Then Brandyn was told by another (more intelligent) co-worker about the Battlestar Galactica series. The guy said it's "Totally Awesome." I was skeptical but we rented the first season and were up watching it until 2:00 am. And I admit to being such a dork, I can't wait for tonight so we can see what happens next.

Ruining The First Day Of Summer Break

2009-06-14T10:44:00.000-07:00

So Isiac says "Lets do something summery!"

I have a moment of absolute insanity and think it would be fun to do some yard work. Ya know, we'd be out in the sun and fresh air, with the birds chirping. Isiac could even help me spread mulch while in his scooter (plus he likes to crank up the speed and do laps around the house).

Three hours later...

Isiac is inside not-so-patiently waiting for dinner -- I am outside pondering the necessity of weeds in the world because doesn't everything in nature have a purpose? Then what are weeds for? -- I am covered in dirt and chemicals of all kinds. -- My body is just beginning to register pain (that will intensify by the hour). This was not at all "summery."

And just a thought...yard work was invented by masochists.

"Hooray!"

2009-06-14T09:22:00.000-07:00

The Last Day Of Fourth Grade!

Friday was Isiac's last day of school. I should say "last" until summer school begins. Nevertheless, he was deliriously happy - like a monkey in a banana tree - to be done with the official school year.

It wasn't until just a few days ago that I realized this was his first year, since preschool, where he began and ended at the same school. What kind of monster/moving-junkie parents are we?

He has one more year before he moves on to Junior High. Because of the kind of program he is enrolled in, he will not only be in the same school for one more year but in the same class as well -- same teachers, desks, windows and classmates. Having that much stability in his life could cause a ripple effect that spreads through earth and space...one never knows.

Day Dreaming

2009-06-06T13:38:00.000-07:00

The school year is almost ending for Isiac and I think he is worn out from trying to hold himself together for seven hours a day. I had to go pick him up early this Wednesday...he had passed the acceptable limits of school behavior. I was upset and frustrated. He got a big talk and a time out when we got home.

After leaving his room (letting him ponder my lecture) he called me to come back in. Huge tears were running down his face, soaking his pillow. "I want to go back in time, back to preschool when life was good and easy. Please, let's go back." My heart fell on the floor in a million pieces. I curled up beside him on his bed and cried with him for a while.

I've heard this song many times before. Then I heard it last night and it reminded me of Wednesday.

Keane - Somewhere Only We Know -

Lyrics:

I walked across an empty land
I knew the pathway like the back of my hand
I felt the earth beneath my feet
Sat by the river and it made me complete

Oh simple thing where have you gone
I'm getting old and I need something to rely on
So tell me when you're gonna let me in
I'm getting tired and I need somewhere to begin

I came across a fallen tree
I felt the branches of it looking at me
Is this the place we used to love?
Is this the place that I've been dreaming of?

Oh simple thing where have you gone
I'm getting old and I need something to rely on
So tell me when you're gonna let me in
I'm getting tired and I need somewhere to begin

And if you have a minute why don't we go
Talk about it somewhere only we know?
This could be the end of everything
So why don't we go
Somewhere only we know?

Oh simple thing where have you gone
I'm getting old and I need something to rely on
So tell me when you're gonna let me in
I'm getting tired and I need somewhere to begin

And if you have a minute why don't we go
Talk about it somewhere only we know?
This could be the end of everything
So why don't we go
So why don't we go

This could be the end of everything
So why don't we go
Somewhere only we know?

But I understand this is life -- suffering, mixed with joy and drops of mediocrity. If there were a way to go back to the perfect time in his mind or a place without pain would it even feel like living? ...it is a nice thing to dream of though.

Giving His Autograph

2009-05-31T21:15:00.000-07:00

Isiac's Muscular Dystrophy clinic is in the Portland Shriners Hospital. The hospital has been under construction - adding more space to treat more children. The framing of the addition has been in the news here, as construction workers have been writing names of children staying in Shriners on the metal beams.

So we just happened to be there on the day when they were holding their "Beam Topping Ceremony." Isiac got to write his name on the final beam to be placed on the building.

*I am kicking myself for not taking a picture*

The beam was painted white and Isiac wrote with a black Sharpie, in all caps -

I S I A C.

I asked if he wanted to add his last name. He gave me a confident "No." As if the word Isiac is his complete identity and anyone reading that one-word name will know of whom it speaks. Naturally.

I like the idea of his name up there in that building on the hill -- embedded in the body of a giving, healing place. I don't know how long Sharpie ink lasts...I like to disregard science on this one and believe it lasts forever.

Summer Hair

2009-05-22T16:45:00.001-07:00

Three things Isiac compares to being boiled in molten lava:

Having his toenails cut
Washing his face
Getting a hair cut

So the great experimentation...ignore the long hair or subject myself or someone at GreatClips to a 20 minute scream-fest? If you can see, it's already hanging over his ears. Since it's almost summer, does it really matter? I guess it's all about how unruly and maybe down-right trashy it gets looking. It could look great, who knows. Plus, he's been begging for "Ozzy Hair" ...not that I want it to go that far but a bit long-ish might be somewhat cute and much easier on our pshychies.

I also hate to get my hair cut - because of the cost, the time it takes, the mandatory small talk, etc.

Recently, my hair had become pretty long and annoying. So I cut it myself, about four inches. I have the basics of hair cutting from classes in high school (yeah, all those years ago). Though I really don't have to be a genius with my hair because 90% of the time it's up in a mom-tail (a ponytail of convenience and looks absolutely mom-ish).

When I cut my hair, Isiac said I looked "pretty". It must have been the shock of seeing me with out the "tail."

Thanks kid, you made me smile today.

Dental Assistant

2009-05-22T15:26:00.000-07:00

On Wednesday I had a very long and painful dentist appointment. I didn't have an ounce of dread leading up to the appointment, even though one of the procedures was to be a rather heinous root canal. I had two reasons backing up what might be considered abnormal thinking - ridding myself of serious tooth pain and being in a two hour nap-like state, courtesy of Nitrous Oxide.

I am no druggie, but I do love being in that hazy state when horrible things are happening to my mouth. I was sitting in my reclining chair almost giddy with anticipation. Then Dental Assistant came into the room and ruined everything:

DA: "Um...your dentist, today, is not licensed to use Nitrous Oxide."

Me: Blink. Blink. Blink.

DA: "She does use Valium to replace the Nitrous. Are you familiar with the drug Valium?" (She said that last part very slowly).

Me: "I know what Valium is. I guess it will have to due."

(Quick inner dialogue & mild panic: "Was she kidding with the Valium question? She definitely has not read my chart or she'd know I know what Valium is. This drug is not going to be enough to take me to a happy place while they drill into my teeth!)

DA (smiling): "Oh, that won't work for today. You have to get a prescription beforehand and take it one hour prior to the visit."

Me: Blank. Stare.

Dental Assistant is not on our Christmas List.

Has It Been A Month Or One Very Long Day?

2009-05-15T21:50:00.000-07:00

Time has had a strange way of passing without distinction...days blurring together to become an indistinguishable mass.

It seems like Brandyn's birthday, almost a month ago, was the last date I can recall with full resolution. After that, Isiac became ill, then there was the hospital stay, then the I-don't-know-how-many days home from school.

To complicate things more, the time spent lying in the hospital bed was not good to Isiac's muscles. His Muscular Dystrophy jumped forward almost a year, in loss of strength and ability. He can no longer walk...an event we were not prepared for.

So Brandyn and I have been here for his frustration, anger and tears over the diabetes, muscle damage and altogether unfairness of life. Outsiders who don't know him well - haven't spent ten years getting to know him - think he's not handling himself with enough emotional restraint. I see him though, he is a soldier. He fights through every burden placed on him to find some happiness in the day. The king of imagination, he uses the most beautiful thing about him, his mind, to go to worlds where disease doesn't matter. We may need some guidance on how to manage this better - but he should get credit for keeping his smile, his laugh and the hope I see he has.

With head spinning from new information and worries, my body sore from being the physical strength for Isiac, keeping track of time has all but disappeared from my mental ability...and I'm kind of OK with that. Time has not been much of a friend anyhow.

On The Learning Curve

2009-05-05T23:24:00.001-07:00

Tomorrow is our follow up appointment with the Diabetes Educator. It is a two hour appointment in which we will go over the more complex aspects that weren't rammed into my brain during the hospital stay.

Brandyn requested the day off to be there. He wasn't able to learn much from the initial hospital training since he had to work and they didn't give us appointment times. They pretty much came whenever -- in and out of Isiac's room throughout the day (no time to let me nap!).

I gave Brandyn the basics of insulin shots today and he gave Isiac his pm shot. He did well but I have to say, he gives manly shots -- poking that syringe in Isiac's upper-toosh with robust force. The educator will have a few practice shots for him so he can learn to give them more like a girl.

We have a few questions too:

Why is he still tired?

How come he's hungry all the time, seriously?!

Do I need to be scared about cutting his toenails, because just getting that done is already a battle?

What about eye check-ups?

Any chance if we wish while throwing a penny in a fountain he will spontaneously get better?

The scary thing about tomorrow's appointment? Two hours with a bored Isiac!

Add This To The Mix

2009-04-30T13:32:00.000-07:00

A week ago today, I took Isiac for an early visit to the ER for a urinary tract infection. I thought the infection had turned into Sepsis. An IV was started (he was very dehydrated) and blood tests were taken. The doc came back, relatively quickly, with news. I was expecting to hear Isiac needed IV antibiotics and lots of fluids - I was completely wrong.

"He has diabetes and we will need to transfer him to a pediatric ICU." I felt like I couldn't breathe. How could Isiac have another disease and something so immense as diabetes? I wanted to not believe it. Just as the doctor was giving me the news, my father-in-law walked in the room. It was perfect timing - I needed someone there.

It is long and complicated as to why I thought he had a UTI. I can be thankful the symptoms of Sepsis are similar to those of Diabetic Ketoacidosis. He was seen just the day before at the Urgent Care and the doctor had missed the diabetes alltogether and given him antibiotics for a UTI (I cursed her out a bit in my mind since her ineptitude could have killed my son...totally deserving of a few choice words).

Anyhow...a day and a half in the ICU and then two and a half days in a less critical room. I stayed with him. I had to get a crash course in type 1 diabetes and how to manage Isiac's care.

So now our life feels like it has been taken over by counting carbs, planning meals (and I am NOT a planner!), pricking fingers, charting numbers and giving insulin shots. People keep saying it will get easier to live with - become second nature to me. For now, my mind is seriously overloaded and every glucose reading is possible bad news.

Where's my Valium?

The First Step Is Admitting The Problem

2009-04-20T19:46:00.000-07:00

Procrastination has crept into my brain and made a cozy nest where my determination used to live. I haven't put much fight into getting rid of procrastination. I figure I can work on getting my resolve back another day.

So goes the frequency of my blog entries. By the end of the day, I barely have enough energy to speak and make sense at the same time. Writing seems like something better left for tomorrow (where I optimistically hope for a magic reserve of energy to kick in).

So when I finally get to uploading the pictures form Easter and Brandyn's birthday, I will post them. It could be tomorrow or a week from now. It does put a bit of excitement in life...never knowing when something will get done. I like to think of it as a lottery -- things get done by sheer chance and there's that temporary high afterward. It's Fun.

Here Comes The Sun

2009-04-09T19:52:00.001-07:00

Highlights from the first real sunny day of the year -
from ending to beginning.

For dinner, the boys ate out in the back yard. Isiac had his first Big Mac - He thought it was awesome.

By the afternoon I took off my slippers and socks to show off my pasty skin with Capri pants and flip flops.

On a morning walk, Isiac found some Dinosaur Eggs (or rocks if you're boring and have no imagination). He's pretty sure they're Raptor eggs and we need to make a nest for them.

It was a great morning to lounge and snuggle. We wanted to start the day slow and lazy.

After waiting for so long to see sun shine again, it was a good day.

History, Evolution & Sinus Problems

2009-04-03T18:39:00.000-07:00

Isiac stayed home sick today. I'm sick along with him. We spent a big part of the day siting on the couch, tissue box at our side, watching Discovery and History Channel programs. Isiac loves these types of shows and can navigate the On-Demand menu to find some pretty interesting, informative and entertaining programs.

We watched two programs in the past week about ancient (around 200 BC) war mongers. Those guys were brutal back then and never seemed to tire of conquering other empires. I'm thinking leaders back then had major childhood/anger issues.

The Discovery show of the day was "Dinos to Turkeys." A 46 minute investigation on how ancient Raptors may have evolved into Turkeys. I found it so comical - the contrast between the sleek Raptor and the plump, goofy Turkey. Great entertainment. I also learned ancient Crocodiles survived most of earth's epic catastrophes...similar to Cockroaches, in how they can survive a nuclear bomb. Gators and Cockroaches may one day rule the earth (this just may be a thought provoked by intense sinus pain).

So next Thanksgiving, when you carve into that juicy Turkey, think of how you may be having the grandchild of a dinosaur for dinner. You'll be eating a piece of ancient history, smothered in gravy.

After School Surprise *on april fool's day but not a joke

2009-04-02T00:01:00.000-07:00

When Isiac came home from school, we sat and talked about his day. He was describing his teacher's cell phone and what he ate for lunch, etc. But something was off...different. I watched him as he talked for a few minutes, looked closely at him, and then I saw it - His Hair!

"What the...? Did you cut your own hair?" My eyes bulging out of their sockets.

"Yes," he said as he tried to contain his all-to-proud grin.

"Why on earth would you do that? Were you mad at your hair?"

"I just wanted to. I wanted to see what it would be like."

"Kid, you're killin me." I decided he'd wear the awful hair for a few days, hoping he will realize it was, indeed, a very bad idea!

Now if he were three or four, I would have a chuckle and think it was silly and kind of a cute "little-kid" thing to do. But shouldn't the urge to mangle one's own hair be out of the system by age ten? This is just four days after I finally got a proper hair cut too! He had an awful buzz cut for about two months, we let grow out and just the other day it was long enough to be fixed.

He had way too much pride and no embarrassment about his hair creation, I'm thinking the buzz cut may have to be permanent...as preemptive damage control.

*Notice the almost bald spot, right in front!

*And the jagged hair line too. He must have taken two or more swipes with the scissors (my crazy kid.)

Through A Wormhole

2009-03-31T19:46:00.000-07:00

Mindy (she has dreadlocks in most of her hair - total hippie), Mom (doesn't she look wiped out?) & Isiac (oblivious to the chaos he's caused) on the last day of the visit

My mom and sister left last Friday and Oh My Gosh, somehow we were drawn into a wormhole (created by the force that is Isiac) that led straight to a black hole of craziness. Strangely, we came back to normal (I know calling our life normal is a huge stretch) when my mom and sister left -which is so weird because he is usually so happy when they're around.

Isiac's behavior was, well, out of control. I kept thinking he would behave better the next day - maybe he was overexcited or something - but no. Fortunately my mom has an almost never ending fuse and unbelievable patience. She took him for tons of walks in his scooter and even stopped in the mattress store (To sit on the model beds. This is fun?) and the dollar store. She played UNO at least fifty times too. Way to go mom!

There were positive times. Brandyn and I got almost a full day alone together. My mom sent my sister and I for a leisurely lunch and pedicures and we had the biggest, best macaroons ever...no exaggeration. I haven't spent that much one-on-one time with my sister for years and I've missed her. She has recently become a vegetarian. I was a veg from age 16 to 21...until I married a ravenous carnivore then meat just became sooo appealing.

So that was Isiac's Spring Break...thank goodness it's over and we're all still (somewhat) sane.

Spring Break 09

2009-03-21T23:59:00.000-07:00

Spring Break began on Friday for Isiac. This year I hope will be a good break -- my mom and sister are coming to visit for a few days. Isiac is totally excited and is constantly reminding me of how much more "fun" Grandma and Mindy are compared to me.

He doesn't mean to be hurtful when he lets every untactful thought come out of his mouth. He has no filter and no concept of putting things nicely. I've learned to live with it (and it often makes me laugh - it can be a good thing).

Besides, in my mind, I am also thinking of how much more fun Spring Break will be with my mom and sister here -- I can take a nap or two!

Ties To The Emerald Isle

2009-03-21T23:19:00.000-07:00

For years, Brandyn boasted he descended from "Scottish royalty." He had almost perfected his Scottish accent to go with all the "Scotland brewing in his blood."

Then about two years ago Brandyn's mom, after overhearing his boast about "royal Scottish blood," broke the news he came from an Irish, not Scottish line. So much for feeling a kinship with the movie Braveheart.

The good news about an Irish blood line (even if it is only part of the ancestral brew that runs in Brandyn's veins) is St. Patrick's Day! Brandyn now has a day celebrate heritage (and all things green).

Brandyn's sister, Amanda, hosted a St. Patrick's dinner on Monday. I volunteered to bring the corned beef and some bread pudding (which I don't think is Irish but is very yummy). The corned beef tasted more like roast beef - I need to practice that a few times before next year. Thankfully the bread pudding turned out nice.

I blame my dry and tasteless beef on the fact that I have no Irish blood...basically all English. I have nothing built in my DNA to help me create perfect Irish food. But I am relieved to be cooking Irish food and not trying to find the perfect recipe for a Scottish Haggis. Thank you, ancestors, for being Irish!

Can I Reschedule Life Please?

2009-03-13T20:46:00.000-07:00

There was an appointment today, to order Isiac a power wheelchair. Something we really need to get done because with all the song and dance the insurance company makes one go through, it can take up to a year before a chair is delivered.

I canceled the appointment. I fully intending to go, then a migraine began. Once a migraine begins, it doesn't just go away because I have somewhere to be. I will have to call Monday and reschedule.

The migraine, I figure, was due to all the anxiety I've been having about this wheelchair. It's one thing for Isiac to have a scooter -- a not-so-scary-type of thing. Ordering this wheelchair is a step on a path I don't want us to be walking on.

Isiac had a substitute bus driver this past week. She drove for Isiac his last half of first grade, at the school where the Physical Therapist first noticed there was a problem with Isiac. She was happy to see him, these years later. Seeing her made me a bit sad. It made me wish we could go back in time to the pictures I have in my mind of us before MD became a member of our family.

Life wasn't perfect then but compared to now, it was innocent and much more carefree. I guess all the appointment canceling in the world won't stop what is coming...I'll just make sure to take plenty of ibuprofen next time.

Ten-Year-Old Paradox

2009-03-02T17:27:00.000-08:00

Isiac is like a free flowing fountain of information. More often than not, if he is thinking something he verbalizes it -- no matter how personal, inappropriate, embarrassing or incriminating it may be to himself (or his mother).

But getting information out of him is next to impossible. You see, he will tell a room full of strangers that he has to go poop but if I ask him if he likes the kids at school, he will not give me a concrete answer. In Isiac's world, detailed information is only given spontaneously.

This hasn't been a big problem, surprisingly, until just this week. We noticed Isiac didn't look so well and he told us he felt "dizzy" which had us worried. So we asked specifics about symptoms like if his ears hurt, if he had a headache etc. Each answer was met with a "maybe" or an "I'm not sure" or an oh-so-frustrating "I don't know."

How have I never noticed this paradox? Maybe because I am constantly barraged by a stream of information from Isiac that I usually don't have to ask for specifics. But after our futile Q&A last night, I am thinking he would be a rock star CIA agent. Nobody could get secret info out of him by any form of interrogation. There is, however, a chance that he would blurt those secrets out spontaneously (a minor drawback).

CIA plans will have to wait...I'm taking him to the doctor since I really can't tell how ill he is. The guy with the medical degree will have to figure it out.

The Most Important Oscar

2009-02-23T17:47:00.000-08:00

Brandyn and I watched the Oscars last night, something we don't always do. For me, the best part of the night was when Jerry Lewis received the Jean Hersholt Lifetime Humanitarian award.

The montage video of Jerry's career and transition into charity work for the MDA had me in tears. He has raised two billion dollars since he began his fundraising work in 1966. Hearing that number for me, as a parent of a boy with DMD, is deeply personal and I feel like driving to California to hunt him down and personally thank him.

Since Muscular Dystrophy is not a very prevalent disease, there is little funding for it and even less public knowledge. To have someone put a spotlight on this disease once a year, every year, is a significant service to both the children and their parents.

I love the quote Jerry relayed in the ending of his video:

"I shall pass through this world but once. Any good, therefore, that I can do or any kindness I can show to any human being, let me do it now. Let me not defer or neglect it for I shall not pass this way again."

The Sleep Guru

2009-02-22T16:28:00.000-08:00

Brandyn has had sleep issues for some years now. After the suggestion of more than one doctor, and a lot of nagging on my part, he went to a Sleep Specialist Doctor (Sleep Guru).

We thought Brandyn was going to get right in for an overnight sleep study then get the pill or necessary equipment he needed for sleep. Not so easy. He had a very long consultation with the Doctor wherein we detailed almost every facet of Brandyn's life. After almost two hours of talking, he told us he thought Brandyn was a "fascinating case" (translation: not going to be fixed with a simple pill).

So he outlined healthy "Sleep Hygiene" and wrote down a list of rules for Brandyn.

1. Only sleep eight or eight and 1/2 hours a night.
2. Wake up the same time every day - no exceptions.
3. No television for one hour before bed time.
4. No computer or computerized devices for three hours before bedtime.

I gasped in shock at that last rule - how can we cut ourselves off from the computer for three hours before bedtime? At this point I thought the Guru was actually an undercover operative trained in deprivation torture.

Regardless of my hostile feelings towards the computer rule and the fact that I know I need more than eight hours of sleep (more like 10, thank you), I've been supportive in following the rules. Brandyn has been good and only fallen off the Sleep Hygiene wagon a couple times and he is actually sleeping better. Maybe this doctor does know something.

Never Thought I'd See The Day

2009-02-18T20:19:00.001-08:00

It was like an alien force took over my son's brain for the night. He sat down at our desk and made a worksheet for the family... A. Math. Worksheet.

This is a child who avoids doing school work to the point of falling on the floor and flailing about. So you can see why I was a bit in shock and also excited he'd even think to do this as a fun project.

Creating the worksheet

He made us sit at the kitchen table and we all took turns answering a math problem until all problems were solved (Brandyn is on the other side of the table, not wanting to be photographed due to a bad case of bed head).

Isiac showed us how to properly solve problems by using our fingers to add.

We're smarty-pants -- we got 100% on our worksheet! Time for ice cream!

In The News

2009-02-18T20:06:00.000-08:00

A couple of weeks ago, I had the evening news on in the background. We normally don't watch news since it's all bad (who wants to subject themselves to that everyday?).

Isiac was sitting next to me on the couch while I was doing stuff on my laptop. Out of nowhere, he asks "Are we affected by the country's financial crisis yet?"

"Huh?" I looked at him then at the television and, of course, the news guy was rambling on about the downfall of the economy. Who knew Isiac would even pay attention news? I then explained that we are alright but the country and the world is going through a rough time so we have to be careful with money (and made a mental note to never leave the news on again).

"Is that why I don't get new video games all the time?"

Taking an opportunity to squelch his relentless requests for new stuff, I said "Yes, that is exactly why."

Then Brandyn's mom came over and the first thing Isiac said was "Grandma, are you affected by the financial crisis?"

My child - The Economist.

Warning:

2009-02-18T19:56:00.000-08:00

Suggestive Material

Our big splurge for Valentine's Day was a box of Krispy Kremes. I had a cold so making a decadent dessert was just not gonna happen.

The Krispy Kreme guy gave Isiac this ~~hat~~ propaganda. It has sat on the kitchen counter all this time. Every morning when I walk in the kitchen, I crave doughnuts...stupid hat!

I threw that awful hat the garbage today and I swear I heard the bathroom scale say "Thank You".

Posting Hiatus

2009-02-01T23:19:00.000-08:00

For a few weeks now, one day has blurred into the next. I even check my cell phone just to see what day of the week it is and I'm often surprised at the answer.

Our life is always throwing new things at me and I'm all discombobulated -- so much so I can't find the mental energy to write about it. Which is sad because every day I go about thinking of things I'd like to have on record. Things that Isiac says that make me laugh need to be saved. Times with family, help they have given, needs to be acknowledged. Those random things that only I care about should be captured for future reading too...just because.

Hopefully when life settles back into routine, I can pull those things from my memory and post them here (at least some of the good ones).

Common Ground

2009-01-22T20:17:00.000-08:00

Isiac had Brandyn and I watch a small biography on Ozzy Osbourne with him. Now, I don't dislike Ozzy, I'm just not a fan of hard rock. But during this biography, there were instances when I actually liked the songs and had never know they were Ozzy's (his older stuff).

Isiac was ecstatic to learn I liked this music -- music created by the object of his on-going obsession. Finding we have more songs we both like (so we can rock out to in the kitchen) makes me happy too.

Historical

2009-01-20T19:00:00.000-08:00

I missed most of the Inauguration Fest today. I will have to watch the part I'm actually interested in - the inaugural speech - online.

I think it is a good day for the country. Our country needed a good day. I hope there are good results to follow...we need those too.

Classic?

2009-01-20T18:30:00.000-08:00

An R.E.M. song came on the radio today, while I was in the car. It was released back when I was a Junior in high school. The D.J. introduced the song as "Classic R.E.M."

I was taken aback -- If the music I listened to in high school can be called classic, am I old enough to be considered classic?

Brandyn's niece just turned 13 -- entering the teenage years. The night before her birthday, I thought a lot about the years to come for her. I would not go through teenage-hood again for anything. Yet I had great friends as a teenager and without all the stress and pressure of adulthood, I had some of the funnest times of my life. It is really something to see this girl enter a new phase of life and I am excited for the experiences she will have.

Maybe it's not so bad to be in the classic category -- the wisdom, perspective and all that. I can wait a while, however, before I'm dubbed an "Oldie but Goodie."

Cook & Serve Heaven (For Me, Anyway)

2009-01-14T23:52:00.000-08:00

There is something so comforting about cook & serve pudding. Sure, it takes forever to make but it is so worth it.

Last night, Brandyn and I were watching some free, On-Demand movie and I had to have some pudding (there's always room for pudding, right?).

I looked through my shelf and, after almost giving up, found a box of butterscotch cook & serve. It swear I heard a harp and a glow of light emanate from the pudding box.

I even let Brandyn whisk for a while, so he could get excited about the up-coming magnificence. I was kind of concerned that soy milk wouldn't set up like regular milk (because we don't drink the foul-smelling cow stuff). But it worked and was yummy and I was floating somewhere in warm pudding paradise, watching the rest of our movie.

Then I noticed Brandyn hadn't finished his...what? (!!!) He said something about "sugar overload." I was offended on behalf of the pudding. I then regretted letting him whisk - standing over the stove and smelling the butterscotch is part of the whole beauty of cooked pudding.

I will forgive him...someday.

On Keeping Part Of The Past

2009-01-14T22:59:00.000-08:00

I've been putting Isiac's CaringBridge site (the web site that chronicled about two years of Isiac's disease) into a Blurb book. It is taking much longer than I anticipated. The process of editing the journal is heartbreaking and touching at the same time...I can't just copy and paste this thing.

There are tons of notes from friends and family in the Guestbook. Looking back on those entries, I still feel the same emotions as when I first read them. I began Isiac's site a few months after his official diagnosis (Oct. 06). To me, it felt like we were all alone -- nobody cared about our little boy and this monster of a disease, Duchenne Muscular Dystrophy. I broke down in tears the first time I read his Guestbook and saw that people did care. To have anyone send a note or write two words of support was phenomenal in my mind.

It's hard to think of those first two years and not get a sick feeling right in the center of my gut. So why would I want a book to remind myself of all that? To be honest, I'm not 100% sure. I do know when I began the site, I thought I would always be in the black pit I felt I was in. I thought life would never go on and happiness would not exists for us anymore. Then, I don't know how it happened -- maybe just time taking away some of the sting -- I learned to live with the pain as part of life. I (we) leaned to live again.

I can't express how freeing that mental shift was. It brought me (and I think Brandyn too) out of an almost year-long emotional coma. In keeping this journal as a book, I expect to read how we shifted from one mentality to the next...how we evolved together and learned to live.

There is still the sadness, frustration and grief that goes along with a degenerative disease. That will never change. My hope for keeping the chronicles of those years we thought we'd die from pain is this...a reminder we can change, adapt, learn and come through it all.

Things That Go Bump In The Night

2009-01-08T19:55:00.000-08:00

We'd be sitting in our living room or eating dinner and out of nowhere, a thud noise underneath the house. It was loud enough to make us jump out of our skin and, in my case, almost pee my pants.

The culprit? Cats.

Since winter began, there have been two cats (that we know of) come and go in the crawl space under our house. Like our house is the local night club. And it's freaky because I know one found the way in first and then spread the word to other cats, with some secret cat language.

Once we found how they were getting in, we blocked off their entry. It was great until about four days later, around 5:00 am, when screeching cat noises right beneath our bed startled Brandyn and I out of sleep. We had unknowingly locked the cats in.

So began the irksome game of getting the cat(s) to come out...

There were several mornings where I could be seen in my pajamas, coat and snow boots, yelling at the crawl space of our house. I started with my nicest "Here kitty, kitty" voice and it didn't work. I tried making a trail of tuna to lead them out ('cause they had to be starving) and that didn't even work. These cats were more than stubborn. After days, I escalated to yelling "Get out of my house, you cats!" which didn't work either. (I can only imagine what neighbors must have thought of the scene -- "there's that crazy pajama lady, yelling at her house again...poor thing.")

It came to the inevitable - someone had to go in and get the cats out. Brandyn, my crawl space hero, went under the house the other night. He went in the cold and the darkness. I stood outside to yell at him when the cat came out and for moral support. After about 30 minutes of Brandyn army-crawling in the dirt, the cat came running out. Hallelujah!

Now, we are holding our breath, hoping they don't find another way in. Those cats are creepy clever.