p.sunshine

Inspiration...move me brightly

2011-03-11T14:00:00.001-05:00

Inspiration can hit us at the most odd times. For me it would be 2AM last night. I stayed up all night reading Sarah Jones' blog . I read it from the beginning and ended up crying harder and deeper than I ever remember doing in my life. The emotional outpouring was triggered by sadness for Sarah and her family, but then turned into feelings of guilt, despair, anger, and regret. Sarah's openhearted writing not only made me realize what her family has been through, but forced me to finally stop denying that the disease which my son has could ultimately end his life in the same way.

I feel so guilty that I have taken for granted that Hayden is "doing well" now and that I have not taken advantage of every moment we have together. As a fulltime-work-away-from-home mom and now with Hayden in Kindergarten most days, my time with him is limited. So why, why do I go home and let exhaustion from MY day get in the way of playing with my son? I do not know how much longer he has on Earth. And the fact of the matter is he is not doing great. Cystic Fibrosis is a Progressive disease. It gets progressively WORSE. I have been in denial of Hayden's progression just because he hasn't had frequent hospital visits. This does not mean that he hasn't progressed. He has tested positive for Psuedomonas at every clinc (except the last one) for over a year now. That is worse. He has a G-Tube now. That is worse. He has a daily cough. That is worse. He tires easily during physical activities, even just walking. That is worse. It's so easy to make excuses and be in denial. My eyes have finally been opened.

Today I made a promise to myself and my sons (my other son, Riley has ADHD) that I will not let my tiredness at the end of the day or on the weekends get in the way of spending time enjoying my sons' lives and giving them the best life possible. If I have to, I will buy a coffee maker (since I gave up Diet Coke) I will get up in the morning and do jumping jacks. I will do whatever it takes to be there and be active in their lives. Simply telling my sons that I love them is showing them words. I need to act, so they can FEEL how much I love them. Yes, they fight and they use potty talk and they drive me nuts, but my life is so much better because they are in it. Perhaps if I engage them in more play, they will fight less and use more approproate language, maybe not. I am lucky that they are still here, and I need to take advantage of that.

So my friends, I love you all like you are family of course, but if I turn down invitations, please don't take it personally. My main priority needs to be my main family. I have been so selfish and I am so angry with myself and so filled with regret that I have already wasted some good years worrying about when my free time would come. I can have that later. For now I need to bury myself in love-as much as I can for as long as I can.

Hayden's Wish is granted!

2011-02-24T10:59:00.000-05:00

Here are a couple write-ups about our wonderful trip to Walt Disney World - which was entirely planned and paid for by Kids Wish Network. If you have some donation dollars burning a hole in your pocket, I highly suggest you deposit them at KWN - it will make someone's life so much brighter :)

Here is the article from KWN

Here is a link to the KWN website

here is a write-up from the Grand rapids Press

this is addicting

2011-02-11T15:54:00.000-05:00

click here to see the fire engine inspired treasury!

My first etsy treasury !

2011-02-11T15:07:00.001-05:00

please click here to check it out :)

Disney2011 - a set on Flickr

2011-02-02T20:03:00.000-05:00

Disney2011 - a set on Flickr Thanks to Kids Wish Network, our family was sent on a lovely trip to Disney :)

It's Derby Time!!!

2011-01-21T13:12:00.001-05:00

It's Derby Time!!! by pattisunshine featuring indigo jeans

sherpa chic

2011-01-09T00:56:00.001-05:00

sherpa chic by pattisunshine featuring trapper hats

New Year Cheer

2010-12-31T23:20:00.001-05:00

New Year Cheer by pattisunshine featuring gold heels

Thankful Thursday

2010-12-16T13:20:00.003-05:00

An online friend of mine, Ronnie "Sickboy" Sharpe, suggested that we all take a time out during this crazy Holiday season to reflect on a few things for which we are thankful. Listed below is my contribution:

1. I am thankful to Ronnie and his stunning new wife, Mandi for creating a huge forum for those of us who are linked to the CF community - It wasn't long ago that I would do an internet search for CF and come up with just short of nothing - nowadays I have a HUGE access to the CF community- new friends to be made, experiences and pictures, progresses and fears to share . Thanks Rondi!

2. I am thankful for the new Helen DeVos Children's Hospital in Grand Rapids, MI

3. I am thankful that our landlord had the heart tolet us rent her house even though we have 2 cats and she hates cats! Also that our house is within walking distance to stores, exercise paths, an aquatic center, a theatre/art gallery and a Thai food restaurant (yes, and a Hot N Ready Little Ceasar's - but don't tell anyone I actually go there)

4. SO SO very thankful to be in the Forest Hills School district where they actually care about helping us solve our children's issues

5. SOSOSO very thankful to my mom for helping take care of my kids since I have to work 1/2 hour away full time, she has brought my youngest son up to be a polite, caring young man :)

6. Thankful for my neighbors who are there when we need them and keep to themselves when we don't (ahahaaahaa)

7. Thankful to my awesome friends and my brother, who has come back into my life.....

That should suffice for now, gotta get back to the grind. Thanks again CysticLife and Rondi for persuading me to dust off my blogspot!

Ze Wish List

2010-12-10T13:22:00.001-05:00

Ze Wish List by pattisunshine featuring a chain tote

Sweater Dress-Ing

2010-11-24T13:08:00.001-05:00

Sweater Dress-Ing by pattisunshine featuring suede shoes

reality Check - The "Annie" Look

2010-11-20T23:08:00.001-05:00

reality Check - The "Annie" Look by pattisunshine featuring a chain dress

#2 in the Reality Check series - translating our favorite character's looks into real life

Reality Check - The Pippi Look

2010-11-20T00:14:00.001-05:00

Reality Check - The Pippi Look by pattisunshine featuring leather boots

How to wear the Pippi look in the real world

All reddy

2010-11-18T23:32:00.001-05:00

All reddy by pattisunshine featuring skull jewelry

Dec-utante

2010-11-18T22:54:00.001-05:00

Dec-utante by pattisunshine featuring a jersey dress

Jingle Vintage Jangle

2010-11-18T14:07:00.001-05:00

Jingle Vintage Jangle by pattisunshine featuring vintage jewelry

sudden flight

2010-11-15T22:57:00.001-05:00

sudden flight by pattisunshine featuring a vintage bag

my 1st set - go easy on me ;)

I think I might be back

2009-09-24T23:15:00.001-04:00

sorry

2006-09-19T11:33:00.000-04:00

Sorry it took so long for me to update this. My flickr page is really:
www.flickr.com/photos/pattisunshine

Adios, Blogworld!

2006-05-25T11:16:00.000-04:00

To the very few of you who actually read my blog, I am announcing that I will no longer be posting here. I have decided to keep putting my pictures up on my flickr site, and perhaps I'll have little comments there, but I just don't have time to write. think the address there is www.flickr.com/pattisunshine
But anyway, I've been writing more in an actual journal lately, and it's personal stuff that I'd rather not share with the world,. so please visit me at my flickr photo site.
Ta-ta! thanks for reading!
Love,
Patti

Hayden's Heroes

2006-05-22T12:16:00.000-04:00

Hayden's Heroes
Originally uploaded by pattisunshine.

The Hayden's Heroes themselves!

The Purps

2006-05-15T20:56:00.000-04:00

The Purps
Originally uploaded by pattisunshine.

Holland Tulip Festival, everyone!

closer look

2006-05-06T16:53:00.001-04:00

closer look
Originally uploaded by pattisunshine.

Lady in red/aurora bourealis

2006-05-06T16:53:00.000-04:00

Lady in red/aurora bourealis
Originally uploaded by pattisunshine.

2006-04-29T20:15:00.000-04:00

Flashes of scenes from the inside of a PICU room, floor 8, Center Wing, of DeVos Children's hospital cloud my mind as this week is the 1st anniversary of H's CF diagnosis. I thought I would be depressed, emotional, pensive - about the shock and then the disappointment, then the grieving for a healthy child that we went through. Instead, I am depressed and pensive about other things, selfish things. I have been holding H. closer lately, studying his features more deeply, memorizing his sounds and smells. I keep forgetting that he has a life shortening illness, and that we have no idea how long he will be in our lives. He seems so healthy and robust - to look at him. No one would suspect, save for his unusually pale hue, that he is a chronically ill child. Just over one year ago, our littlest one was born, and we had no clue.
I currently have several friends who are expecting their own new babies soon, and I have to bite my tongue to keep myself from asking them if they were tested for the CF gene. No pregnant woman wants to be burdened with the paranoia that there might possibly be something "wrong" with their unborn child. We all go into our pregnancies hoping for a shiny, healthy baby - and most women end up with just that. When I was pregnant with my first son, I knew in my heart that he would be healthy, happy, and perfect - and he was! (although the colic for the 1st three months was a hellacious experience) From the moment of conception with my second son, however, I knew something would not be right. I remember crying about it. I knew I was pregnant, and I knew the child would have some sort of disorder. I kept hearing about the autism epidemic over and over on the news, so I got the idea stuck in my head that he would be autistic. Then I kept meeting people who had kids with Cerebral Palsy, so I imagined that would be the fate of my new child. I was so sick during my pregnancy, and so full of fluid. And I knew.
When H. was a baby, he rarely smiled. He was pale-bluish, and had huge cheeks that puffed outward and hung under his chin. People would look at him, and turn their face away as if they had just seen a troll. I kept telling my mom "I just don't feel like he's in there. He shows no emotion". H. slept all the time, and always on his left side. Everytime he ate, he would cry in pain and then have strange aqua colored poops. I found that if I pounded somewhat forcefully on his back, it would calm him down, but he would always burp and then projectile vomit. Our pediatrician had me come to his office several times to work with the lactation consultant, they thought I wasn't feeding H. properly since he wasn't gaining weight - I would go in, and they would weigh him, and then have me nurse H. for 15 minutes, and then weigh him again - They discovered I was doing everything right, but he just was pooping it all away. In hindsight, if I had known about CF, or if my doctor had seen a CF baby before, he would have recognized this as typical, we could have started H. on CF meds right away, and probably would have avoided his near-death at two and a half months. Good ol' hindsight, eh?
But H. didn't die then; he is here with us, getting into EVERYTHING, testing his limits, making his big brother laugh, terrorizing the cat - everything a "normal" baby would do. The only difference is that we have to stop and give him pills before he eats, and we have to treat his lungs twice a day....and keep him out of daycare, away from second-hand smoke, campfires, sick people, germs...but most moms do that anyway. I love my sick baby like any mom would love their child, maybe even a little more, since I know he's probably just on loan from God. Someday we may have to give him back. I hope not. I hope he will outlive his parents. I hope he lives long enough to be around when a cure is found.

Rapunzel, rapunzel, let down your hair!

2006-04-28T12:21:00.000-04:00

Rapunzel, rapunzel, let down your hair!
Originally uploaded by pattisunshine.

Peekaboo

2006-04-16T11:00:00.000-04:00

Peekaboo
Originally uploaded by pattisunshine.

The tulips I love to kiss

2006-04-15T19:35:00.000-04:00

The tulips I love to kiss
Originally uploaded by pattisunshine.

Alli does blonde

2006-04-15T19:34:00.000-04:00

Alli does blonde
Originally uploaded by pattisunshine.

for more samantha's shower pics, click on this picture

Food, glorious food

2006-04-09T12:45:00.000-04:00

Food, glorious food
Originally uploaded by pattisunshine.

Dang, I forgot my doggie bag too. For more shower pictures click on the picture

View of the staircase that Steve made

2006-04-09T12:43:00.000-04:00

View of the staircase that Steve made
Originally uploaded by pattisunshine.

The E. family took their cool house on the lake and made it even cooler. All handmade!

For more shower pictures, click on the pattisunshine link

profile of a babe

2006-04-08T10:49:00.000-04:00

profile of a babe
Originally uploaded by pattisunshine.

On a warm spring evening, I tried out the new camera. Here's a good one.

Birthday boy!

2006-04-08T10:40:00.000-04:00

Birthday boy!
Originally uploaded by pattisunshine.

Happy 5th birthday R.!

The Video

2006-03-25T15:15:00.000-05:00

Check out the video I made for the Great Strides Walk!
http://www.onetruemedia.com/shared?p=3a86cdaf6fb07211b31cb

sickness by brokestick

2006-03-21T19:11:00.000-05:00

Big Brother R. always says "When H. is sick it's sickness by brokestick and when he gets better, it's sickness by fix-stick". This past week, it was time for the brokestick. Little H. caught something, and he had it bad. His mucus isn't like a normal person's, you know, when WE are sick, we cough and sputter and use Kleenex to get the junk out. H. isn't so lucky. We have to beat the junk out of him. Force medicines into him that he gags and chokes on (and hurls across the room - we had a nice array of splash-paint colors one night - flashback to the '80's). THen one day over the weekend, he stopped eating. Would not take a single sip or nip of anything. I weighed him on our scale about every hour, hoping that all the work we did to get him to the 50th percentile would hold.
But alas, he did lose some pounds. HE was choking and coughing, and I freaked, My mind kept replaying his stay in the PICU almost one year ago.
Would it be that he ends up there on this his near anniversary?
Then morning came, and suddenly, the boy was begging for a bottle. He chugged and guzzled, guzzled and chugged. He is still chugging away today on White grape juice and special high-calorie milk.
Whew, that was close. He still has a bit of a cough leftover, but nothing like it was a few days ago. I so want him to make it through the one-year mark with no more hospital stays!
Here's to you, mah little fahter, you done goooooood.

duckflight

2006-03-13T19:12:00.000-05:00

duckflight
Originally uploaded by pattisunshine.

taking off from their romp in our flooded yard

Picture of Devin with walkee talkee

2006-03-13T19:10:00.000-05:00

Picture of Devin with walkee talkee
Originally uploaded by pattisunshine.

for Lori!

new camera smile

2006-03-13T19:08:00.000-05:00

new camera smile
Originally uploaded by pattisunshine.

Picture taken with the new camera - yea!

mirror image2

2006-03-03T20:28:00.000-05:00

mirror image2
Originally uploaded by pattisunshine.

don't mean ta be coy roy

2006-03-03T20:11:00.000-05:00

don't mean ta be coy roy
Originally uploaded by pattisunshine.

Lovely day

2006-02-26T17:50:00.000-05:00

No, I don't post often enough. My schedule is this:
Get up 6:30AM, get R. ready for school/myself ready for work - as soon as Todd gets home we rush out the door, I drop R. off at school, go to work, work, pick R. up from school, go home, clean the kitchen, make dinner, clean the kitchen after dinner, play with the kids/pick up the house and do laundry, give the kids baths, give H. his treatment, put the kids to bed, get in bed, fall asleep to Sex and The City Reruns, get up at 6:30 AM, repeat.
No time to socialize, take pictures, write, have relations with husband, or read books for bookclub (we don't talk about the book anymore anyway) OR BLOG!
Free Time's up! Gotta go!

high school art

2006-02-14T18:23:00.000-05:00

high school art
Originally uploaded by pattisunshine.

something I made in art class circa 88

clinically speaking

2006-02-07T19:03:00.000-05:00

Baby H. had his CF clinics today. For those of you not hip to the CF scene, it is the at least tri-monthly visit to the Pulmonology clinic where CF'ers get weighed, measured, cultured and evqaluated so Dr.s can note their progress and make changes to their meds/diets if needed.
The Dr.s were so elated with H's progress, that they proclaimed that he should be used as an example for a CF'er who is doing well.
That's a relief....I get really excited when I hear that news, but then I realize he's only been doing well for 9 months out of his WHOLE LIFE. We have no idea when he will start a decline, so I will take this news and feel the glory for now, dang it!!!
Now we will commence to the part of H's life that I have been dreading ever since his diagnosis. The switch to "real" foods. He's been doing so well on his special drink mix, that I am scared to make the change. CF kids require 1 1/2 times the calories of a "normal" kid's diet. This means that Todd and I will have to make sure that he gets heavy, fat-laden foods while we try to eat low-fat. I am terrified of what our grocery bill will look like. With one vegetarian, one carnivore, ane eater-of-low-fat foods and one eater-of-high-fat foods, mealtime is going to prove to be quite an interesting ordeal, indeed!

Hayden's Heroes

2006-02-06T19:55:00.000-05:00

I've decided to be a team captain for the Great Strides Walk for Cystic Fibrosis this year. Last year, the walk took place while H. was in the hospital, just weeks after we had discovered he had CF.
If you would like to donate, please go to this link:
http://www.cff.org/Great_Strides/PattiGunderson
or you can email me at pattisunshineAThotmail.com if you are a local and want to be a walker/funds-raiser.
I'll post more on this later as I learn more about it - gotta go give H. his treatment!!!!

scoopin ice cream

2006-02-02T11:25:00.000-05:00

scoopin ice cream
Originally uploaded by pattisunshine.

Baby H.'s birthday treat - Black cherry ice cream and a doughnut!

gazing

2006-01-31T20:37:00.000-05:00

gazing
Originally uploaded by pattisunshine.

January 26th

2006-01-26T08:31:00.000-05:00

gerberface
Originally uploaded by pattisunshine.

HAPPY BIRTHDAY BABY H!!!!! MAMA LOVES YOU!!!!!!!!!!!!!!!!!!!!!!!

first steps

2006-01-20T11:51:00.000-05:00

I haven't been posting because I hate writing when I'm down. When I was in the midst of the high school trauma of trying to find where I fit in, and all that loveliness of teenagerdom, I wrote books and books of poems, expressing my downward feelings, but let's face it, writing about being down in the dumpies is not entertaining!
Today's post, instead, has a little something to do with the baby. The other night, he took his first steps! The best part of his reaching this milestone is the fact that all of our family was there to witness the action. The four Gundersons were congregated in the playroom/computer room, and baby H. was trying to stand. I was holding onto him and then I just gently released him and Todd reached his hands out and Baby H went step, step, step over to daddy. R., myself and daddy all started cheering, I was jumping up and down, and H. was just beaming with joy and the sense of accomplishment.
In one week, my littlest guy will be one year old. *sigh* I will cherish these little moments in my heart forever.

2005-12-31T12:57:00.000-05:00

Ahh, winter in North Carolina, ya sure can't beat it....only we don't live in North Carolina!? What's up with this unseasonably warm weather? A few weeks ago, Todd and I were hastily stacking bowls and towels to catch leaks from "the heaviest ice damming we've ever had" which caused a steady flow of water into our newly painted kitchen. Now all we have left to show for our snowy winter extravaganza is a couple of holes near the kitchen window, a hanging light fixture and wet, brown grass in the yard.

This soggy winter was to be the year when I could FINALLY get out to teach R. how to ski. Last year I was majorly pregnant, and the year before, he was too young. A friend of mine has a brother who has been named a ski pro. He took his daughter out on the slopes, tucked into his special backback, before his baby was able to walk. Since I am not a pro, I would not, could not attempt such a task. I will stick to waiting until my kids can walk well before including them in my favorite (albeit longlost) sport. for now, I can be found bright and early each morning, swooshing the curtains aside in great anticipation of seeing a sign, any hint at all, of those flaky little things falling from the sky. As soon as I see some you know I'll be jumping in the car with ski gear in tow, heading for the ski hill. Let's just hope that my ol' ski pants still fit!!

peeeee youuuu!

2005-12-29T13:24:00.000-05:00

peeeee youuuu!
Originally uploaded by pattisunshine.

first Christmas

2005-12-28T19:42:00.000-05:00

first Christmas
Originally uploaded by pattisunshine.

it's a miracle!

on santa's lap

2005-12-17T19:13:00.000-05:00

on santa's lap
Originally uploaded by pattisunshine.

for Mrs. P.

2005-12-17T19:12:00.001-05:00

for Mrs. P.
Originally uploaded by pattisunshine.

Thanks for the cute outfit, Mrs. P!

looking at the snow

2005-12-17T19:12:00.000-05:00

looking at the snow
Originally uploaded by pattisunshine.

old video pictures

2005-12-03T18:54:00.000-05:00

old video pictures
Originally uploaded by pattisunshine.

R.'s first birthday, 2002 video still

icicledrip

2005-12-02T21:36:00.000-05:00

icicledrip
Originally uploaded by pattisunshine.

I feel like this icicle-just melting, melting, melting. exhaustion.

HOO knew?

2005-11-21T11:24:00.000-05:00

Holiday Gifts to Support Cystic Fibrosis and the Ronald McDonald House ATLANTA, Nov. 18 /PRNewswire/ -- For 2 weeks, Hooters Girls from Oklahoma, Illinois, Missouri, Kansas and Arkansas will be auctioning off homemade items on eBay to raise money for Cystic Fibrosis and the Ronald McDonald House. EachHooters Girl will add their special touch to their personalized item in aneffort to raise money for these worthwhile causes. The homemade items will beauctioned off on eBay from November 24th through December 5th. "We arealways involved in community service, especially during the holidays, and thispromotion gives the Hooters Girls a sense of personal contribution to theseorganizations," explained Diana Switzer, Outside Sales Manager for Hooters ofAmerica. The items made from the Hooters Girls in the Hooters locations inMissouri and Illinois will raise money for Cystic Fibrosis and the items madefrom in Kansas, Oklahoma and Arkansas will benefit the Ronald McDonald House. Hooters is very involved with charities andorganizations nationwide through HOO.C.E.F, the Hooters Community EndowmentFund. The fund was started in 1992 and has raised and contributed over 8million dollars to major non- profit organizations like Make-A-Wish Foundation,the V Foundation for Cancer Research, American Diabetes Association, SpecialOlympics, Muscular Dystrophy Association and the Juvenile Diabetes Foundation. SOURCE Hooters of America, Inc.Web Site: http://www.hooters.com

Tear jerker

2005-11-18T20:53:00.000-05:00

While dropping my 4 year old off at preschool today, his teacher called me over to look at a project that the kids had done. She showed me a list on one of those oversized Kindergarten type notepads. It was a list of what the kids were thankful for. The teachers had asked each student for input. At the top of the list was "God then "trees" then mom and dad, toys, etc., and right there in the middle was the phrase to end all phrases. It said "for my brother to not be sick (R.)". Yep, I bawled, right there, in front of 24 pre-schoolers and three teachers.
I bawled all the way to work, and I told my coworkers about it then went to my desk and sobbed. Then I called my husband and told him, and he cried.
Later, I called Grandma, and she broke down.
The preschool teacher summed it up: "even though that boy is a challenge, one thing is for sure, he has a big heart".
That's my boy!

The Seven

2005-11-16T22:46:00.000-05:00

Here's mine:
Seven things I:
Am afraid of: Faces in windows, losing my kids, car accidents, war, terrorists,animals mounted on walls, icy roads

Like most: music, dancing in my living room, driving in the country with Todd, forests, photography, reading, laughing

Random facts about me: I'm adopted, I met my birth mother and sister - actually now, the whole family,I hate driving, I have webbed toes, I won a writing contest in high school for poetry, I sang in a couple operas when I was in junior high. One of which was Carmina Burana, I partied with Timothy Leary in college (he came to the house party where I lived)

Important things in my bedroom:(oookaaayyy) uh... bed, reading lamp, dual alarm clock, baby monitor, baby's nebulizer, clothes, candles

Things I want to do before I die: Take my kids to Europe, live outside of Michigan, publish a children's book, send my biological father a letter about me, reconnect with old friends, see Hawaii, be a grandmama

Things I can do: edit people's writings, paint, ski, multitask, hairwraps, cook quesadillas,a backbend

Things I can't do: Drive a stickshift well, type without peeking at the keyboard, kiss my elbow, wear foundation, stop kissing my kids, not laugh at least once a day

Things I say the most: beyatch, hee hee, er sumthing, you __ nazi (paper nazi, coffee nazi, fill in the blanks), what doing?, yeehaw, that's right

celeb crushes: Steve Buschemi (sp?), Paul Newman, Jude Law, Madonna (don't look at me like that), The host of "the Secret Life Of"...on food Network, Mr. Rogers, Jack Black

Favorite things about my partner: His two-toned eyecolor, thick dark hair, dark eyebrows, his embarassed smile, his collarbone, the fact that he is not afraid to cry, his ability to surprise me

People I want to see take this quiz:Lori, Cari, anyone who reads this and has a blog

imprisoned flower

2005-11-16T22:30:00.000-05:00

halloween 028
Originally uploaded by pattisunshine.

At Frederik Meijer Gardens - Children's Garden

Holy haircut batman!

2005-11-05T09:08:00.000-05:00

This is the haircut I swore I would never force upon my child - but he wanted it like that!

fireman & pumpkin boy

2005-11-05T08:59:00.000-05:00

the boys at Trick or Treat time

pumpkin baby

2005-11-05T08:56:00.000-05:00

Here's our little pumpkin boy!

halloween 013

2005-10-31T11:24:00.000-05:00

halloween 013
Originally uploaded by pattisunshine.

picking out pumpkins

Wine & Roses for Cystic Fibrosis

2005-10-30T11:33:00.000-05:00

Wine & Roses for Cystic Fibrosis
Originally uploaded by pattisunshine.

Paula - a CF mom& our guru, Cat, our CF Nurse, and friend

fed up

2005-10-25T21:02:00.000-04:00

Frustration has its way of changing us. Lately, I have found myself morphing into that person whom I never wanted to become. My voice, thick with anger and stress has lowered about an octave, become raspy with the echoes of nightly strain. Lines on my face are appearing more rapidly, my face, once tattooed with a smile, has a permanent frown. I used to turn away when I saw women looking like this in public, thinking to myself..."sheesh, what can be so hard about life that they can look like THAT?" And now I know, and now I am that woman.
My four year-old, such a handsome, clever, creative young boy, has caused me to reach this point. He has somehow managed to do invoke the soul of a rebellious teen into his skinny little boy body. He is defiant, angry, controlling, and thinks the world revolves around him.
"What that boy needs is discipline" they say. Yes, I have been disciplining him from sunrise to sunset, and it is not doing good, solely managing to wear me down. "get him checked for ADD" they say. Yeah, I've seen kids on Ritalin, they look like the life has been sucked out of them. I don't want my son to disappear, I just want some calm once in a while. I looked up herbal remedies for ADD online, and it only led me to websites featuring links to BUY this fabulous product or BUY that wonderful book. No one seems to have any real advice anymore, it's all about the money making. "Time outs" don't work, he knows there is nothing to keep him sitting in the chair. We send him to his room and what does he do? Colors with crayon on the new carpet! Great tactic, I tell ya!

Perhaps his behavior is a trait of a creative-minded person. Maybe my little hellian is merely exhibiting an early form of the "tortured-artist" syndrome. Possibly, he has so many ideas and inventions rolling around in his head and he isn't mature enough to know how to express himself. I wish I could help him. I remember feeling this way many times when I was little. I still feel that way today, only now that I have the maturity, I am unable to create due to lack of time (and energy!).
Maybe this is just a phase, maybe he has ADD and maybe he is just an extremely stubborn kid. I still love him no matter what. I'm hoping that I can keep my sanity long enough to see him through this ruckus. It would be pretty tough to give him a tough love hug with my arms strapped in a straight-jacket.

sorry!

2005-10-19T11:25:00.000-04:00

Some of youse have been bugging me to get writing again. I'm sorry, I've just been so terribly busy (but I love it) with all of the mishmash that is going on in my life right now.
I have been writing some things on paper late at night and in the car as they come up, but haven't had time to organize or solidify the thoughts what with trying to get the house clean and organized, watching the kids while Todd works nights, working days, etc. etc. So I apologize and I promise promise, promise that I will TRY (ha ha) to get at least one piece up a month.
OKAY!?!?!

fauxhawk

2005-10-17T23:59:00.000-04:00

fauxhawk
Originally uploaded by pattisunshine.

and it was all yellow....

9.29.05 004

2005-10-15T22:19:00.000-04:00

9.29.05 004
Originally uploaded by pattisunshine.

Baby H. is getting into sports.

Foo Fighters!

2005-10-06T12:50:00.000-04:00

We also will be seeing this guy tonight. Melissa said he was sweaty. Ewwww.

weezer!

2005-10-06T12:48:00.000-04:00

Tonight we will be seeing this guy in concert!!! My assistant met them while bowling last night.

THE NEW BASEMENT

2005-10-04T22:32:00.000-04:00

THE NEW BASEMENT
Originally uploaded by pattisunshine.

what Todd has been up to. Click on the photo to see the "befores"

rear view

2005-10-01T23:24:00.000-04:00

rear view
Originally uploaded by pattisunshine.

view of the sunset from my carride home

beans

2005-10-01T22:25:00.000-04:00

beans
Originally uploaded by pattisunshine.

steamy green beans

Ada, MIchigan, USA

2005-09-30T20:22:00.000-04:00

Ada, MIchigan, USA
Originally uploaded by pattisunshine.

this is my entry for the "day in the life" project

2005-09-24T10:19:00.000-04:00

Early in the morning, a few weeks ago, as I was rushing around the house practicing the AM routine, I glanced out the window into the backyard and saw a softball sitting in the woodchips by our fence. Not having my glasses on, I thought nothing more of it other than "hmm, the neighbors must have hit their ball into our yard". A few days later, I glanced out the window again at the same spot, and thought, "hmm, that's not a softball, it looks more like a big plastic bag. Wonder how that got there. Must've looked like a softball since I didn't have my glasses on". I told the 4 year old to go over and pick up the bag and throw it away. He bent down to touch it and immediately retracted his hand, and with a horrified expression, proclaimed "the white stuff came off on my hand!".
Growling and muttering about how I have to do everything around this house, I went down to pick the bag up myself. Only it wasn't a bag, it was an alien creature egg...or so I thought, until I poked it with a stick and realized it was a nuclear-grown, world-record sized mushroom. I immediately speared it on the stick and tossed it into the refuse bin. That is, after I stopped to take some pictures.
Today, I glanced out the window and saw that the giant overgrown mothermushroom has now spawned two offspring in its place!

interesting article

2005-09-11T11:30:00.000-04:00

As I find informative articles about CF that you all might enjy, I will post them here.
Following is an uplifting article about CF and the fact that people with it are suddenly living longer.
http://www.msnbc.msn.com/id/9193315/site/newsweek/

closerwillow

2005-09-01T18:10:00.000-04:00

closerwillow
Originally uploaded by pattisunshine.

Weeping willow...this looks best viewed large!

cropkiltman

2005-09-01T18:09:00.000-04:00

cropkiltman
Originally uploaded by pattisunshine.

We visited the Celtic Festival in Rockford. Todd said I wanted to go just so I could see men in skirts....and I did!

giantbutterfly

2005-09-01T18:08:00.000-04:00

giantbutterfly
Originally uploaded by pattisunshine.

this thing was bigger than my fist, well just as big...and it kept darting around our heads and landing on these flowers, showing off for us.

Uploaded by pattisunshine

A Day on Earth, work 10

2005-09-01T12:05:00.000-04:00

A Day on Earth, work 10
Originally uploaded by michelbenard.

neat idea! DO IT!

reality bites

2005-08-29T22:29:00.000-04:00

I just finished reading the book "Alex: Life of a Child" by Frank DeFord. It's a work of non-fiction by an author whose daughter passed away at age 8, from CF.
Although the book thoroughly depressed me- Todd tried to read it, he reached about page 2 and gave up, he was to sad to go on - it also was a huge slap of reality for me. I guess, because Hayden "looks" so healthy right now, I had forgotten about the seriousness of his illness. The book reminded me that CF is a progressive disease, that Hayden will never get any better, he can only get worse. I'm so terrified for my little boy. Right now, his whole life depends on the treatments that Todd and I give him. His LIFE, and the length of it, is totally in our hands. It may happen that he will live to be 50-something, but there is also a chance that his health could suddenly take a turn early on in life.
Every parent has the fear that they will outlive their child, the fear of losing them to a car accident or some other freak incident. The hardest part is not knowing whether or not it will happen. When Hayden was diagnosed, I felt that he was given a sort of death sentence. I know he will not live to be an old man (unless they find a cure or a miracle drug!), I know that he may have to endure a lung transplant at some point in his life, I know that he may not be able to have kids, and I know that he is going to suffer from a lot of pain in his life, and as a parent, it kills me inside.
My biggest wish for him, besides a cure, is that I could take the pain away, just rip the CF right out of his body, throw it in the incinerator...gone for good. I know that, in reality, this can't happen- so for now, I will pray - something that is awkward for me, but hey, I'm willing to overcome that for the sake of my baby. I will pray for a cure to come soon. I will pray for him to outlive me, for our family to be a whole, loving unit. I will pray that he can beat the odds and this nasty disease that he harbors. And last but not least, I will pray that he knows and understands how much his family loves him, that we never wished this horrible thing upon him, and that maybe, possibly, through his illness, he can teach the world, or even just a few people, the value of life and love for one another ....the REAL important things about living.

and another thing...

2005-08-23T15:13:00.000-04:00

I can't believe I left out the part about baby H. saying "mama"! He said it the other day when we were in the car. I was floored, and so was the 4 year-old. Now baby H. says mama mama mama all the time. I'm so proud (even if he is just making noise indiscriminately)!!!

UPDATE!

2005-08-23T09:58:00.000-04:00

I can't believe this is happening to me, I knew it would, it's inevitable, I just assumed it would be later in life, but here it is, happening now. At 6 1/2 months, baby H., the one that I thought would be BEHIND in the game, is CRAWLING!!!!!!!!!
I forgot how quick those little rugrats can get once they start to be mobile. Todd and I had gotten lazy, and have neglected to utilize our shelf-space. How quickly we are learning to put the phone books, computer wires and various broken- objects- in- the -midst- of- repair up up and away from baby H.'s reach.
The vacuum cleaner is also constantly in use. I once placed H. on the floor in the dining room and during the millisecond that I turned around, he had managed to find the one tiny piece of pretzel that had fallen on the floor (leftover from Todd's poker party no doubt) and had it dangling just outside his gaping mouth. Supermama's bionic arm quickly snatched that from his grasp. I can't complain, though, I'm getting exercize!
In other news, Todd and I have decided to put our house up for sale. We're searching for houses in the Eastown or Mulick Park area or somewhere else if it's cool and close to neat things. ...and safe, of course.
With our current life's schedule, we have discovered that we need a smaller house, smaller yard, smaller heating bills and a smaller mortgage! So here we go again, on the oh, so enlightening journey that is the buying and selling of houses. Wish us luck, we'll need it!

I'm cured!

2005-08-18T13:11:00.000-04:00

There's nothing like laughter to kick a streak of the blues. My coworker Melissa and I found ourselves on a big fat laugh track this morning, and couldn't (or wouldn't?) get off. I don't even know what sparked the craziness, but we both fell into the giggle trap simultaneously. Man, was that fun (and NEEDED!) I feel better now.

colorportrait

2005-08-14T09:11:00.000-04:00

colorportrait
Originally uploaded by pattisunshine.

And I'm the green-eyed monster!

gerberface

2005-08-14T09:09:00.000-04:00

gerberface
Originally uploaded by pattisunshine.

Baby H has the blues too

reyes

2005-08-14T09:08:00.000-04:00

rieyes
Originally uploaded by pattisunshine.

R's are a really intense blue

daddyeyes

2005-08-14T09:07:00.000-04:00

daddyeyes
Originally uploaded by pattisunshine.

Here are the blue eyes I was talking about

4 year-old's self-portrait

2005-08-13T15:08:00.000-04:00

4 year-old's self-portrait
Originally uploaded by pattisunshine.

He is a true artistic genius ( in his mama's eyes)He even added the stripes in the shirt. Someday he'll buy me a pool.

drowning in tears

2005-08-12T13:30:00.000-04:00

I'm having a hard time keeping it together today. Every little thing is setting me off. I really hope it's PMS because that will pass. I'd hate to have to start therapy again - no time or cashflow for that. It's so embarassing when the tears start a-flowing at work, I have to pretend that I have allergies because the minute someone asks me what's wrong, and acknowledges the fact that i can't contain my emotions, the dam in my head releases and out comes the waterfall .

It's very difficult being a woman who works with a bunch of men, they don't understand the female mood pendulum - at home, it's the same, I'm surrounded by maleness. Luckily, I live with men that are less afraid to show their feelings than the stereotypical male - my older son is very receptive to human emotions. He's the first one to come running with a hug or a pat on the back when we are hurt or sad. My husband is not afraid to cry, either, and with those deep, blue (& one green) ocean-like eyes, you can't help but get drawn in and want to swim in and out of his sadness.

Sometimes I like to take long drives with the music blaring, to sort of "purge" the tears out. Perhaps I will do that today. Coldplay is always a helper on that front. I'm also getting my hair cut today for the first time in quite a while. The last time I sat in the chair was 2 days before Hayden went into the hospital. Here's hoping I don't lose it in the salon when the hair stylist asks me how he's doing. She has no idea what sort of can she'll be opening with that one!

Ahhhh, writing all this down has made me feel better. Thanks!!!!

THe nose knows

2005-08-11T08:21:00.000-04:00

Currently reading: Drop City

Of all the things to be depressed about, this seems very trite - I wanted to update my picture for my blogs, so I took about 50 pictures of myself last night and not one was good. Not because they weren't clear or had a good composition, but because of my huge obnoxious nose that does not fit on my face. All I could see in the pictures was nose, nose and more nose. So that's it! I am getting it fixed.
Right now we are in a financial pinch, but I am determined to find a way to raise funds for this cause. I've wantred a different nose since I was about seven, and as you know, that particular feature, like our ears, only gets bigger as we age. I can't afford it, but it's got to be done.
There have been studies and field tests done on the way that attractive people get treated as apposed to the unattractive. It was found that people who have a nice face get farther in their careers, get more offers, and are generally treated better than those with not-so-pretty looks. I have a bit of social anxiety, and most of it is due to the fact that I am constantly afraid of what people are thinking of me and my uneven facial features. I ruin family and friend's pictures with my mug. One of my high school friends was mad because I made a "devil face" in her prom pictures - but i wasn't making a face, that is just the way I am! When someone has a camera, I duck and run for cover. I wouldn't want to break it.
My husband says that if we had the money for surgery, it should go to him since he has a body part that he doesn't like. He doesn't understand that the face cannot be covered by clothing, the face is the first thing people see when they meet you, the first thing on which judgement is passed. HE doesn't understand, because he has perfect facial features!! I want a new nose so that I can feel comfortable around people, and to feel less judged. Either that or we can move to a country where big noses are a sign of prestige, yeah, that'd do it!
Maybe I'm just having a PMS ramble - we'll see in a couple days. For now, if you see a tall white chick walking around town with a scarf over her face, don't be afraid- it's me!

Ship flags

2005-08-06T22:39:00.000-04:00

Ship flags, originally uploaded by pattisunshine.

Ship flags at the Grand Haven Coastguard festival

up North7-05 190

2005-08-06T13:28:00.000-04:00

up North7-05 190, originally uploaded by pattisunshine.

Bacchus frescoe at Gill's Pier

up North7-05 113

2005-08-06T13:27:00.000-04:00

up North7-05 113, originally uploaded by pattisunshine.

Cousin Susan and her Fiancee at their new property

up North7-05 206

2005-08-06T13:22:00.000-04:00

up North7-05 206, originally uploaded by pattisunshine.

Uncle Mark relaxing, reminiscing in the sunlight

2005-08-01T21:19:00.000-04:00

That zombie almost asleep look
My superior salad
The downpour and the birdhouse
Papa Bill's visit
The ol' A&W in Frankfurt

Mini Vacay

2005-07-26T12:49:00.000-04:00

just finished reading: Running With Scissors Currently enjoying: Coldplay & Daisy Mae

Northern Michigan, in the summertime, can be one of the most strikingly beautiful places on earth. I feel so lucky to have this hidden treasure nearly in my backyard (if my backyard took 3 hours to travel- then add in the stops to see relatives in Manistee and to take pictures of Todd's old houses - total trip=8 hrs.) . I feel extra lucky, and grateful, that my aunt happens to own a condo at the Homestead so that we can stay there for FREE!
We spent our mini vacay- Saturday evening, Sunday, and Monday morning, at Aunt Merry-Go-Round's condo enjoying the peaceful sound of Lake Michigan washing up on the course sandy beach. Although the water was not quite bathtub temperature, Todd and R. decided to go swimming anyway and had quite a fun time. I was content to sit and stare at the water as it folded itself onto the pebbly shoreline, appearing like clear green glass melting onto the land.
On the last evening, I finally succumbed to the muggy, sticky heat, as well as the taunts from Todd and Uncle Mark, and dove into the frigid blueness myself. It actually was quite refreshing, and the water felt as smooth as it looked. Baby H. had a good time watching us from the shore, and I kept thinking how nice it will be when the whole family can cavort together in the water like a pack of polar bears.
Speaking of bears, when our stomachs started a-growlin', we headed on over to the Good Harbor Grill , where we enjoyed a fabulous meal worthy of a visit by Rachel Ray; although it was a bit pricey (really good, unique food always is!!) for such a fun, casual setting. I had the Curry dish and my mom enjoyed the grilled scallops. Todd feasted on the black bean soup, which he said stayed hot for the duration of the meal due to the earthenware pot it was served in. Baby H. took a snooze while R. enjoyed the watching the baby at the next table drop spoons, dressing pitchers and plates onto the floor. Afterwards, we attempted to take a detour on the wooded scenic roads in hopes of getting the young ones to fall asleep. No such luck! The excitement of seeing deer in the plains and on the road coupled with baby H's sudden hunger caused us to make a mad dash back to the condo.
Sunday morning, after the storms cleared, and the island was misted over with the after-rain haze, my mom planned to take R. and I for a ride around the Homestead grounds. She suddenly remembered that a friend of my brother's owned a vineyard not too far away, so we ended up going and going and GOING there instead (she thought it was a 10-minute drive, but it turned out ot be about an hour!!) While R. napped in the backseat, I went in to the Gill's Pier Winery and enjoyed my first wine-tasting experience at a real vineyard. Visions of Sideways danced through my head as I sampled the local brews(?) and chatted with the owner. I did buy a nice white wine, abnormal for me, I usually stick with red, but I was in the mood for a sweeter flavor that day. I got to keep the glass, which we can use for a tasting any time we return.
Over our short little weekend vacation, we managed to fit in sight-seeing, relative-visiting, watersports, nature walks and good food eating. It was a great diversion from the daily stresses and a funand relaxing way to wrap up the month of July.

Can't do it!

2005-07-26T12:26:00.000-04:00

I attempted to mess around with the template here so that you can see my links up at the top of the page, but it didn't work.....if you scroll to the bottom of the blog, you will see my profile with my blogroll (links to other blogs that I read) on there. Sorry fot he inconvenience, but I TRIED!!!

Trike on 3 colors

2005-07-18T13:25:00.000-04:00

Trike on 3 colors, originally uploaded by pattisunshine.

click on the photo to see more flickr