A Mother's Day Request

First of all - Happy Mother's Day to all the moms out there!  It's a tough (but gratifying) life being a Mom and we deserve a day to celebrate all of the hard work we put into our families.  I think this is why we can bond with so many other moms (and moms-to-be), even the ones we haven't met, because the act of being unconditionally devoted to our families is something we all have in common.  I hope you all have a wonderful weekend and a wonderful Mother's Day.

I have one small favor to ask this Mother's Day.  For anyone that has followed Lillian's story and would like to contribute to making her life (and her mothers life) a little bit brighter, a little bit more manageable, and a lot less stressful, there's a fundraising event for the Indiana Chapter of PWSA (www.pwsa-usa.org).  It's called SKIP A LUNCH for Prader-Willi Syndrome and it's this Friday, May 14, 2010. 

The Indiana Chapter of PWSA is just getting it's feet on the ground and we had our first meeting when Lillian was just 3-4 months old.  We were able to meet other families and their children with PWS, listen to speakers about the future of our children, we talked about long term care facilities and the possibility of building a facility specifically for individuals with PWS in Indiana (because they can not live unassisted and the closest facility is in Wisconsin).  We met with a speech therapist that had experience with PWS (which is uncommon around here) and we plan to meet with more people who can help us raise our children into adults with full and happy lives at upcoming meetings - but that costs money.  Since our chapter is just getting started, we are doing what we can to raise the money to pay for meeting space, speakers, therapists, and lawyers so that we can all get together and do our best to provide for our children the care they need from birth all the way to old age... because sadly we aren't going to be around forever to care for them.

This organization could really impact Lillian's future and has already helped us in her short life.  So here I am, shamelessly asking you to donate your lunch money..... Here is the flyer I've copied and pasted from the Indiana Chapter of PWSA.

****Disclaimer**** That is NOT my address and I am NOT collecting this money.  It's used for the entire Indiana Chapter which we are a part of.  I will not see who donates money or how much is donated.




SKIP A LUNCH FOR PRADER-WILLI SYNDROME



May is PWS awareness month. Prader-Willi syndrome is a genetic disorder affecting approximately 1 of every 12,000-15,000 births. It results from a small deletion on the 15th chromosome. PWS is the most common known genetic cause of life threatening obesity in children. It typically causes low muscle tone, short stature if not treated with growth hormone, behavior problems, developmental delays, and a chronic feeling of hunger. People with PWS NEVER feel full, even after consuming a large meal. Because of the low muscle tone, people with PWS burn fewer calories and can gain a significant amount of weight eating the same amount of calories as their peers. Therefore, they have to be on a low calorie diet. People with PWS CANNOT control the urge to eat. This urge to eat is physiological and overwhelming; it requires constant vigilance. Individuals with PWS must be supervised at all times.



YOU CAN HELP



PWSA of Indiana has declared May 14th, 2010 as skip a lunch day. We are asking you to skip your lunch and donate your lunch money to PWSA of Indiana. Our organization is just getting its feet on the ground and there are many families affected by PWS here in Indiana that need our help.



Thank you,



………………………………………………………………………………………..

Mail your donation to PWSA of Indiana, 7536 Moonbeam Dr. Indianapolis., IN 46259



Name________________________________________________________

Address_________________________________________________________________________________

________________________________________________________________________________

Amount___________________In honor of______________________________________________



Blogger Templates*Thank you all for taking the time to read this.  I normally wouldn't post something like this on my blog, but it's Mother's Day and I don't have anything to lose by asking.*

Oh, and since I went out of my comfort zone and asked people for donations - here are some fun pictures of Lillian at our family's farm this past Thursday to bring things back to normal.

Oh, what a sweet little baby gossling....

OOPS!

Don't worry, I'm happy to report the little baby gossling is still alive and happy on the farm... and thankful for still having it's head.  :)

Earth Day Give Away Winner!

The winner of the first ever Earth Day Give Away is.....

Shell!!!

Shell said...I would love the clip with a non stick inside :) I hope your having a wonderful day. You did such a great job on them :)

Thanks everyone for participating!

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Earth Day Give Away

In honor of Earth Day I'm going to host my first ever give away!  It's not something I ever thought would happen on this blog, but since crafting has become a fun hobby, and I haven't opened an Etsy store at this point, I have some things to offer :).

Sorry but this give away is a girly one.  It's a flower hair clip with the words One World.  It's turqouise, green and brown.  This one has an aligator clip, but I also have one with a contour clip. Also included is a brown nylon headband that will fit most baby/toddler head sizes.

(The Choc Brown headband is 1.5 inches and NOT made of nylon tights)

To enter this give away just leave a comment with the type of clip you would like and if you you need me to add a non-slip grip to the inside of the clip (if you choose not to use the headband).

Since I don't have a lot of followers and this is the first giveaway, there's a higher chance of winning :).

This Give Away will be over on Sunday and a winner will be chosen using http://www.random.org/.

Hope you all have a great Earth Day!!!

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Good Days and Bad Days

I don't know if it's because Lillian turned 7 months last week, or if I've just been reading too many PWS emails/newsletters or if it's because we've doubled Lillian's therapy sessions, or had her EI evaluation and started talking about the future... but I'm in a funk.

Sunday during church I fed Lillian and listened to the sermon.  As soon as the minister was done I got up and walked out because I just couldn't sit there anymore and keep it together.  Wandering the hallways I tried to re-group, went to the restroom to wash out Lillian's bottle and tube, and decided to just keep walking the hallways.  I don't like crying, and I certainly don't like losing it in public.  Right about the time I pull it together I hear someone yelling my name, look up and see a good friend of mine on the second floor waving me to come say hello.  So I head up there and of course the first thing he asks is... "How are you doing?"  If only he knew how loaded that question was... he probably wouldn't have asked.  I lost it.  Thank God he's one of my best life long friends and a great listener.  And thank God he didn't say something stupid and cliche like "It'll get better."  He just listened.  I needed that.

So let me explain the funk, and then we'll move on to the happier things in life once I get this off my chest. 

The funk started with her aging.  She's 7 months now.  Obviously this is inevitable and ridiculous for me to get upset about, but the older she gets the closer we get to the "unknown" about PWS.  At this age I know what to expect.  I expect her to be lower tone than kids her age, not as hungry, easy to put down to sleep, adorable, sweet, happy, all smiles, proud of herself for her milestones, still in diapers, coos and babbles, ya know - the baby stuff.  We have no idea what to expect as she gets older.  And all you hear about are the horror stories. Google it if you want to know what they are. I'm not going to repeat them here. 

No matter what the future holds she'll be my Lil' Bitty and I'll love her to pieces and will be proud of EVERY SINGLE accomplishment that she ever reaches.  I hate myself for crying about her future.  It hasn't been written and I try my hardest not to write it for her.  It's hers... and damn it we ARE going to enjoy her life's journey. 

But, there are days when I'm just a little bit broken.  I fight back tears when other people are around.  And when it's too much to hold back and I lose it (like in church the other day), hearing myself explain why I'm upset just makes me feel silly.  I mean, honestly I've been given the most incredible little girl and here I am crying about things that haven't even been determined.  Fear.  She deserves so much more credit than that.

So we find joy in this life.  We go on playdates to the Children's Museum and walk through the Barbie exhibit and create our own Barbie wardrobe out of scrap fabric and hair ties. 

We get lunch with Grandma and purchase the cutest little sandles for our upcoming trip to the beach.

We swing at the park, do silly things with our hair after a bath, and snuggle up close with daddy for a much needed late afternoon nap.

And we cherish these moments before they slip away and become the past.

If I had a crystal ball and could look into our future and have it look anything like the present I would stop crying, pull my crap together, and leave the future where it belongs.  But since there's no magic crystal ball we'll continue to take things one day at a time.  And squeeze every bit of joy out of this life. Even on the bad days.

 

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Made by You Monday

This week wasn't really a crafty week in our household, but thankfully the weather coorperated so we could get some outdoor house work done!

It started with spray painting our shutters.  This should have been done last year (well, probably several years ago) but since I was growing a human inside my big ol' belly it wasn't at the top of my "to do" list.  Here's a little comparison of the old (faded green) and new (brown).  You can tell from the pic that pressure washing our house is next on the "to do" list...

(And now I'm totally embarrassed to show this picture of my dirty house. WE WILL be pressure washing the yuck off the siding this week.)

Next up is planting the vegetable garden.  Luckily my mom has a green thumb and started most of the plants (the rest we bought at the farmers market).  We just had to till the ground, pull up the roots and grass still left, and transfer the plants.  I'm really excited with how it's turned out!  We have a row of corn,  green beans, zucchini, eggplant, squash, early pumpkins, tomatoes, onions, and bell peppers.

We just dug the holes for the plants a few inches apart and sprinkled organic top soil once the plants were transferred. For the green beans we made rows of dirt and lined up the beans down the rows.  Then I just went around and stuck the beans about an inch into the dirt with my finger and then sprinkled with organic top soil.  The pumpkins we planted with plenty of space to grow since they tend to spread.  I set up the sprinklers and gave them all a good sprinkling and so far so good! 

My mom, Lillian, and Blaze (the dog) enjoying a day of gardening

Moooom, get me out of the sun!

That's better

All planted!

Hay sprinkled to prevent mud, fence in place, fake owl on "guard" and sprinklers doing their job!  It's finished!  Now grow plants, GROW.

Last but not least, some Impatiens planted in the shady areas around the house to brighten things up.

I hope everyone else is enjoying the spring time weather.  We're going to enjoy a fun trip to the Zoo this week while the temperature is still mild and pleasent... right after we pressure wash the yuck off our house ;-). 

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