Inspiration...move me brightly

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!

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

click here to see the fire engine inspired treasury!

My first etsy treasury !

please click here to check it out :)

Disney2011 - a set on Flickr

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

It's Derby Time!!!

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

sherpa chic

sherpa chic by pattisunshine featuring trapper hats

New Year Cheer

New Year Cheer by pattisunshine featuring gold heels

Thankful Thursday

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

Ze Wish List by pattisunshine featuring a chain tote

Sweater Dress-Ing

Sweater Dress-Ing by pattisunshine featuring suede shoes

reality Check - The "Annie" Look

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

Reality Check - The Pippi Look by pattisunshine featuring leather boots

How to wear the Pippi look in the real world

All reddy

All reddy by pattisunshine featuring skull jewelry

Dec-utante

Dec-utante by pattisunshine featuring a jersey dress

Jingle Vintage Jangle

Jingle Vintage Jangle by pattisunshine featuring vintage jewelry

sudden flight

sudden flight by pattisunshine featuring a vintage bag

my 1st set - go easy on me ;)

I think I might be back

more on that later

sorry

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

Adios, Blogworld!

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