February Series

Rare Disease Day is the last day of February every year.

My Dan had a rare disease - Niemann-Pick - of which there are less than 1000 cases in the world.

So this February, I will be featuring a different rare disease every day in February.  If you were following me in October, you saw a post a day on different aspects of Niemann Pick Disease.  The entire list of those posts is here.

I hope you all enjoy learning, because I know this will be a learning experience for all of us.  Obviously, feel free to share any of the posts and teach others.

If there is any particular rare disease that you have heard of and want to know more about, please let me know and I will see what information I can find.

Second Liebster Award

In the fall, I was nominated for my first Liebster Award.  You can see my post on it here.

Last week, I was nominated for a second Liebster Award.  Since this award is given by other bloggers who read my blog, I enjoy responding to these.

So here goes.

What is the Liebster Award? Here are the Rules!:

This award is given to new or up and coming bloggers who have less than 200 followers...the award is then passed along to other bloggers in the same category to help spread the word and support one another.

1. Each blogger should post 11 random facts about themselves.

2. Answer the questions the tagger has set for you, then create 11 new questions for the bloggers you pass the award to.

3. Choose 11 new bloggers (with less than 200 followers) to pass the award to and link them in your post.

4. Go back to their page and tell them about the award.

5. No tag backs.

I was nominated for this award by Deedra at At My Counter

My random facts:

1. I don't like to clean.

2. I consider myself a cat person.

3. I have blue eyes.

4. I love to read books (but haven't had time lately).

5. I own a blackberry.

6. I still have an old "landline" phone in my house.

7. I don't know what I "want to be" when "I grow up".

8. Slow internet service drives me nuts.

9. I can fruits and vegetables from my garden.

10. I live in New York (but nowhere near New York City)

11. I need a haircut.

Her questions for me:

1. If the moon was made out of cheese, what kind cheese would you like it to be?

               Swiss

2. Do you catch yourself watching cartoons when there are no children around?

               No because I don't have the tv on often when I am home.

3. What was your favorite post on your blog to wright?

               The post titled Who Am I?

4. What makes your blog stand out?

                I think it is because I write about things most people feel are not subjects to write about - death, grief, rare diseases - it isn't all happy things.

5. What zoo animal would you want to me?

              A kangaroo.  Don't ask me why, because I don't have any sort of reason.

6. What are you really good at?

             Lately - being lazy!   Seriously - I think it is researching options before making a decision on a major issue.

7. What is the best tea or coffee to drink?

             Whatever coffee is on sale!

8. Will you do something just for yourself this year, if so what will it be?

              I don't know - I rarely do anything for myself.

9. Do you prefer straight or bendy straws?

            Bendy!

10. What historical period would you like to live in if you could go back in time?

             When life was less complicated and involved more family time.

 11. What was the last thing you ate?
              Meatloaf made by my hubby with ground beef and sausage.

Questions for the new bloggers:

1. Would you rather live in the city or the country?

2. What is the best part of your day?

3. What is your dream job?

4. Name one thing you like about yourself.

5. What is your favorite store to shop at?

6. What social media accounts do you have (you don't need to link them if you don't want to)?

7. Who is your favorite singer/group?

8. What is your favorite meal to cook?

9. Who is your hero?

10. When do you write your blog posts?

11. What is the weather like right now?

My award recipients (in no particular order):

1. One Part Joy, One Part Circus

2. Unabashedly Me

3. A Buckeye in Badgerland

4. History in the Making

5. From Miss G to Mrs Z

6. Outside the Frame

7. Happy Moms, Happy Homes

8. Mourning. Heaven. And You

9. Home is Where the Heart Is

10. Tiny Superheroes

11. The Very Unofficial Adult

5 for 5 - Week 4

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.

Last week's goals:

1. Read 10 newspapers.

         Nope.

2. Trim the indoor houseplants.

          Nope.

3. Make the random phone calls I need to make.

          Did one of three or four

4. Work on the closet a bit more.

           Nope.

5. Drink more water at work.

           Had an extra glass one day this week.  Not exactly a success!

Ok, so last week was pretty bad.  Next week looks to be better.

This week's goals:

1. Read 20 newspapers (I will have some travel time to do this, I hope!)
2. Pack for a long weekend away (I leave bright and early Fri morning)
3. Make sure hubby is all set for my weekend away.
4. Schedule some blog posts for my weekend away.
5. Stay healthy during this trip!

Don't forget to vote for Shannon and bring awareness to Niemann-Pick Type A!

Fresh Produce Saturday

For several months now, we have been receiving weekly organic produce delivery to our house from Cody's Fresh Foods.  They have a set list of ingredients every week, and the customer has the choice of all fruit, all vegetables or a mix, as well as how big a box you want (or how much produce).

From their Facebook page:
This week's boxes include (January 26th) - Butternut squash, baby spinach, red potatoes, chives, celery, avocado, apples, oranges, pears and limes. *Boxes subject to change based on availability. Sign-up at www.codysfreshfoods.com

They only deliver around my area (Saratoga Springs, NY), but in the 6 months or so that they have been delivering food, I have never had an issue!  It is a recurring delivery, and a recurring charge, but it is easy to cancel a delivery for any particular week.

They also  have additional items that you can add to your box - eggs, syrup, coffee, cheese, crackers.



Here are some photos of the produce from a few months ago:

We have had pineapples, oranges, limes, lemons, eggplant, plums, nectarines, peppers, onions, beans, spices, kiwi, avocado, asparagus, grapes, different types of squash, different types of lettuce and greens.  Of course, not all at the same time!

Receiving these different ingredients each week, it makes us get creative with our meals.  And since it is fresh produce, most of it needs to be used within that week.  We have tried some different types of produce that we normally wouldn't have purchased from the grocery store.


Disclaimer: I have in no way received any compensation for this review.  I found this company on my own almost a year ago and didn't start using them until the fall of 2012.  I have paid for every week that I have received a box of produce.

The Boxes are More Interesting than the Toys

As parents you buy you kids all sorts of toys and stuffed animals.  Inevitably the kids like the boxes better than the toys.  But eventually the boxes are destroyed and the toys are there to play with.  Then your kid plays with just a few of the toys - the favorites.

I can truly say, that Dan had tons and tons of toys and quite a few stuffed animals.  Here is his bed right now

None of these stuffed animals were purchased.  Well, in one way you could say they were - with medical co-payments.  Yes, every one of these came from a hospital.

The whale was from the emergency room when Dan was just over the age of 2.  He had tripped and hit his head on a wooden arm of a rocking chair.  About 4 hours into a 7 hour emergency room visit, a maintenance person brought Dan this whale.  When anyone passed us in the hallway with the whale, it immediately brought a smile to everyone's face, partly because Dan was laughing and smiling the entire time.  He would hold onto the fin of the whale while sleeping quite often.

The Eeyore in the middle was from his NICU stay.  We actually bought this for him one day when we were going to see him in the NICU.  It stayed in or near his bassinet the entire 3+ weeks he was in 2 different NICUs.  It still plays Twinkle, Twinkle Little Star when you push its belly.  The arms and legs of Eeyore are well worn from being chewed on when Dan was very young.

The lamb was from his big hospital stay at the specialized children's hospital when we received his diagnosis of Niemann-Pick Type C.  In the emergency room, prior to admission, a child life specialist came in while they were putting in his IV and drawing blood and kept him amused.  She asked if he would want a balloon or the stuffed animal.  I opted for the stuffed animal because he like rubbing things.  All through his hospital stay, this lamb was either a pillow or snuggled up under his arm.  He even curled up with it when we came home.  The lamb still smells of Dan's feeding formula.

Looking through his closet now and in his room, there are tons of other stuffed animals and lots of toys.  But it is kind of interesting that Dan picked these three animals to make his own.  He picked some of the most traumatic times of his life and locked onto the stuffed animals from those times. There are many times we thought Dan was very wise beyond his years, and always seemed to know more than we ever expected.
 

Feeling "off"

Ever have a few days where things just don't seem right?  There isn't anything physically wrong, not sick or anything, you've slept the right amount, you've eaten the right things, but something just doesn't feel right?

Well, that's been me for a few days...which explains the blogging absence.

I still don't know what caused the "funk", but I may have found at least part of the answer.

Being the parent of an angel, and an angel with a rare disease, you become "connected" to other parents in strange ways.  Over the past week, there have been a few families who have reached "milestones" in their grief journey - one passed the 6 month mark, the other the 1 year mark.

Both these families lost their children after Dan.  Both lost their children to the same rare disease (although one had a different variation).  Both families are adjusting to life without their children.

Here is a quote that I've been seeing quite a bit of recently:

“It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
― Rose Kennedy

The Odd Things You See

Over the weekend we went out window shopping - not for anything in particular, but mainly just to get out.

We went to a local mall that has an indoor and outdoor section, with several big department stores.  We started in one of the department stores and as we were walking through, I noticed

SWIMSUITS!!

Now, it is the middle of January, and right now it is about 15 degrees and it is supposed to get colder the next few days.  Why would anyone want a swimsuit????!!!!

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While we were walking back to the car, we noticed a bumper sticker - HONK IF YOU HAVE TO POOP.

Ummm....ok.... not exactly what I was thinking would be a good bumper sticker, but whatever....

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We drove around the outdoor section of the mall just to see what store/shops were there.  I don't think this was really planned, but there is one entire section that is just food...little coffee shops, 2 bigger name restaurants, a butcher/sandwich shop.  Except for a mattress shop.  Yes, a mattress shop.  Maybe they figure you need a place to sleep after eating all the food???

So anyway, those were three odd things I saw all in a few hours, and all in the same general location.

What interesting or odd things have you seen lately?

5 for 5 - Week 3

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.

Last week's goals:

1. Read 10 newspapers.

         Done!

2. Make airfare reservations.

         Done! Boy did I hate the choices - either really early flights or really, really long layovers.

3. Use my juicer.

         Nope.  I need to get better with this.

4. Finish the coupons.

          Got rid of the expired ones, and got the ones I use organized.  Just have to organize the unexpired ones in case I want to try something or another couponer needs some.

5. More work on the closet.

          I didn't work on my closet this week, but helped someone else clean out their's.  Does that count?

So 3.5 out of 5.  Not too bad.

 

This week's goals:

1. Read 10 newspapers.

2. Trim the indoor houseplants.

3. Make the random phone calls I need to make.

4. Work on the closet a bit more.

5. Drink more water at work.

Don't forget to vote for Shannon and bring awareness to Niemann-Pick Type A!

Rare Disease Day is Coming

Every year the last day of February is Rare Disease Day. For more information about Rare Disease Day click here and here and here

This day is promoted by The Global Genes Project. The logo for Global Genes is a pair of blue jeans. Get it? You can see the logo on the left side bar of my blog. If you click the logo it will bring you to www.globalgenes.org

Last year I asked a friend of mine if she would be willing to make some hair ribbons with the Global Genes logo. I purchased a few and other families affected by rare diseases also purchased some. I spoke with her a few weeks ago and she still has some in her inventory - hair bows and headbands. You can see her Global Genes items in her online shop Hart of Karen Creations.  She also has an Etsy shop. While there also take a look at some of her other creations.
 



The specific Global Genes items are here, here, here and here.

Disclosure: I purchased items from this store in early 2011 and have not received any compensation for writing this post. The opinions are my own, and she is a personal friend.

Mid-Winter Ick

Winter has officially been here since December 21, a little over 3 weeks ago.

The winter solstice is the day with the shortest amount of sunlight.

Why do I never really notice the days getting shorter until that point?

Now, every day I go to work in the dark and I come home in the dark - at 6:30am and 6pm.

Every day seems longer and longer in the dark, even though I know that every day there are a few less minutes of darkness and a few more  minutes of daylight.  Maybe I feel like it is always dark because I don't see the daylight.

I don't have a window in my office and I rarely get out of the office during the day.  Lately it is because it is just too dangerous to walk around with all the ice, snow, and snowbanks that are in downtown.

So I get to complain about it, and have people say "It's winter, get used to it."  Not that complaining really helps the situation, but it makes me feel better, which in some way maybe does help the situation.

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Don't forget to vote for Shannon and her son Wylder to help raise Niemann-Pick awareness!

5 for 5 - 2013 Week 2

It's Monday! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.

Last week's goals:

1. Read 10 newspapers. I will get caught up!

        Done!

2. Get coupons organized.  There were lots of coupons in  yesterday's paper, so I really have to do it.

        My coupon book is organized, but still have a bit to do. (1/2)

3. Continue cleaning out my closet.

        Added some new pants from shopping with my mom, so cleaned out a few that didn't fit.  This will be an ongoing process though.

4. Make my reservations for Milwaukee in early February.

        Hotel done!  Airfare will be booked this week. (1/2)

5. Write 3 more posts this week.

         Done!  See here, here, here, here and here

4 of 5 - a fairly good week!

This week's goals:

1. Read 10 newspapers.

2. Make airfare reservations.

3. Use my juicer.

4. Finish the coupons.

5. More work on the closet.

Don't forget to vote for Shannon and bring awareness to Niemann-Pick Type A!

Another Angel

Dear Families and Friends,

It is, with a heavy heart, that we must inform you that Gregorio Martinez lost his battle against Niemann-Pick Disease on Monday morning, January 7th, 2013. Precious little Gregorio was comforted with the love and support of his devoted family.

Condolences to the family may be sent via Gregorio's Uncle, Eric Martinez, at: erictmp@aol.com

For his Obituary and Service information: Click Here. 

Our thoughts and sympathies are with little Gregorio's family during this time of heartbreak and loss.

With sincere sympathies ~ Nadine

 

Gregorio Martinez III (NPA)
01/24/07 ~ 01/07/13

 

Niemann-Pick Type A Awareness

Sorry for the lack of "original" posts this week.  As you can see there have been some other items that I thought were timely and of interest.  This post is another one of those.

I am directly copying a post written on January 11, 2013 by Shannon Laffoon on her blog www.wylderjames.com.  Shannon lost her son Wylder James to Niemann-Pick Type A in the summer of 2012, shortly after he turned 3.

If you could take a minute and read her post and go to the MASK site and vote, it would be greatly appreciated.  You only need your name and your email address and you can vote once per day per email address.
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MASK “Moms Making a Difference” Unity Award

Posted by Mommy and Daddy on January 11, 2013

This year has been off to a very busy start.  Getting settled back in at home has been both wonderful and hard. Trying to accommodate for so many wishes/plans for 2013 with Wylder Nation, more books, my own job plans is overwhelming and exciting.  Needless to say, we have been sleeping well this last week, as Steven and I have been so busy.
I had an amazing opportunity or more like an amazing honor arise in this New Year as well.  Our dear friends Boomer Berman and Stacey Web nominated me for MASK “Moms Making a Difference” Unity Award.  I feel overwhelmed and honored that they thought of me for such an amazing achievement award.  Yesterday was the first time I met the beautiful women behind the organization MASK and the other nominee’s (31 total).  MASK is an organization that realizes there are many moms in the community who are making a difference in the lives of children and families every day. They are acknowledging women who are not only engaging and empowering their own families, but go above and beyond to empower others as well. This year is the second annual “Moms Making a Difference” Unity Award where a Luncheon will be held on Thursday, March 21, 2013 at the Phoenician Resort and Spa. All of the nominees will be recognized in next month’s issue of MASK The Magazine, and will be included in MASK marketing and promotional materials.  Here are just a few kind words Boomer and Stacey said when they sent in their nomination:

“Through Shannon’s strength, she is motivating each & everyone who hears her. With Wylder in her heart &  “Wylder Nation” behind her…waves are being made.”……. “Be prepared to have your heart touched and to fall in love with all 35 lbs of this courageous little WARRIOR, Wylder James Laffoon….Shannon Laffoon amplifies strength, courage and the love of a mother.’

Me and Stac @ PCH Cancer Cause Fall 2012

steven and boomer at the same event

This is not only an amazing honor for myself but and wonderful opportunity to raise awareness about Wylder Nation, Niemann Pick Disease, and to continue to share Wylder’s message with many.  If we were to get into the top 10 nominees we would get press release about our cause … what Wylder Nation, Warrior Baby and NPD is all about.  If we were to win … we would get NATIONAL press releases as well as a 2 page spread in the award-winning MASK -Magazine Back-to School issue this summer.  As much as I wish it didn’t have to be … this is my work, my passion now … this is our commitment to our friends in the rare disease community and our WARRIOR Wylder James.  This is such a beautiful honor for me as Wylder’s momma and an amazing opportunity for the cause.  So, this is where I will ask you all for your votes please.  Voting began on December 17^th so we have some catching up to do Wylder Nation.  You can vote here; http://www.maskmatters.org/shannon-laffoon (one vote per email address, per day till Feb 1^st!!!). The top 10 finalists will be announced in a MASK press release on February 4th. The top 10 nominee voting will close on March 1, 2013 and the winner of the “Moms Making a Difference” Unity Award will be announced and celebrated at the luncheon on March 21, 2013, where the additional nine nominees will also be honored. Please share with your twitter followers, FB friends and encourage friends and family to vote so that a disease that does not get enough attention will start too.  I also put a link on the right hand side of http://wylderjames.com/

HUGEMUNGUS thank you to Boomer and Stacey for thinking of me and Wylder.  I am truly honored to be recognized with such an outstanding group of women that do so much for their families and their communities.  Thank you to Boomer and Stacey for amazing nomination, thank you to MASK for recognizing beautiful committed mothers and thank you in advance to all of you amazing Wylder Nation warriors that will vote.  You can see all of the beautiful nominee’s and their works here;  http://www.maskmatters.org/engage/community/unity-award-nominees
With love and hope always. Xoxo

Webinars on Rare Diseases

I know this isn't for everyone, but through my blog I also hope to educate others rare diseases.  This information came in my email this morning.  Even if you don't (or can't) attend, please forward the information to someone who may be interested.  This will be recorded and archived for podcast if you can't attend.

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 Here is the link for the podcast

RARE Webinar Series: Newborn Screening

Global Genes | RARE Project will be hosting a series of webinars in 2013 geared towards educating and empowering our RARE community.

Webinar #1:  Newborn Screening
Register today!

 

Many more diseases can be detected at birth than are currently part of the newborn screening panels in each state. Join us for a vibrant discussion and to learn more about why the states have different screening panels, how a particular screen can become part of your state’s NBS panel, how the federal SACHDNC panel influences state screening, and the importance of renewing the Newborn Screening Saves Lives Act of 2007.

Date:  January 24, 2013
Time:  11:00 am Pacific Time

Panelists:
Panelists have expertise in both state and federal newborn screen laws, will discuss the process and challenges connected to expanding newborn screening and review the re-authorization of the Newborn Screen Act coming before Congress in March.
* Bill Morris, Grey’s Gift
* Jim Bialick, Newborn Coalition
* Dr. Fred Lorey, Chief Genetic Disease Screening Program (California Department of Public Health)

Sponsored by:  Shire
Space is limited.  Click to register.
(once you click,  you will be directed to our main webinar page.  Click “register” in the middle of the page to register for this webinar)

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Screening for rare diseases at birth is very important.  Not only do the parents obtain a diagnosis right away, it helps parents connect with others and put a support structure into place right away.

Every state tests for different diseases - and some states test for more than others.  Click here for a website where you can link to each individual state's newborn screening program.  Here is a quick view file which shows the same information.

Based upon the above information, there are only two states that test for Niemann-Pick diseases in the newborn screening process: Illinois (types A & B beginning in 2014) and Missouri (although listed as testing for NPD in the file above, it is not listed on the list of diseases tested for).

Thought for the day

I may not have gone where I intended to go,

but I think I have ended up where I intended to be."

--Douglas Adams,
English writer

I saw this quote a week or so ago and thought about it, a lot.

How many of us have specific plans and ideas about what we want to do in any given day, week, month?  How many of those specific plans and ideas do we do?  How often did we get sidetracked or off on a tangent?

Do you remember what you wanted to be when you grew up?  A ballerina, an astronaut, a firefighter?  Did you achieve that goal?

All of our day to day experiences - who we meet, what we do - have the ability to change the way we move through life.

Looking back, I didn't know if I was ever going to get married or have kids.  And now, I've been married over 10 years and had and lost a child. 

Did I ever expect to be a blogger?  Nope.  (ok - this "job title" didn't even exist then)

Did I ever expect to be a teacher about Niemann-Pick Disease?  Did I ever expect to be someone who others ask for advice?  Nope. 

But my experiences have changed where I intended to go, and instead put me where I am today, which is exactly where I need to be.

So that is today's thought for the day.

Financial Goals for the New Year

Last week, I read an interesting post on financial well-being for all ages.  I have copied that post below.

The original post was on the AICPA Insights Blog on January 2, 2013.  I hope my readers find some useful information that can help them get their financial affairs in order.

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Spreading Financial Well-Being

Posted by Melora Heavey on Jan 02, 2013 in Financial Literacy, Melora Heavey

In my professional travels I meet individuals from all over who know about the AICPA’s financial literacy programs and use our resources in many creative ways.  While some are CPAs, the majority is not, and yet each is equally committed to improving the financial well-being of their loved ones, friends and communities.  If I had a dollar for every time someone sang “Feeeeed the PIG!” to me after seeing our campaign promotional items on a conference display table, I just might have enough money to pay off my student loans.  (I never get tired of this serenade!)

Here are some of the many ways these free resources are being used:

Me Save?: A community college teacher in Maryland uses this interactive feature on the Feed the Pig website in freshman orientation classes to help her students identify what type of spenders they are and assist with the delivery of their financial literacy program.  By taking these steps and following the corresponding tips, they are on the right path to change their spending habits and increase savings.

Tweens Curriculum:  This free, math-based curriculum for 4-6 graders includes a teacher’s guide full of classroom activities, an online game and a take home activity for students to share with their families to reinforce the savings message at home.  Here are just two real-world examples of how this is used outside the typical school classroom:

• A high school teacher in a small New England school encourages groups of 2-3 students to select an activity and present to students in a lower grade.  She says that having the “big kids” teach the younger students impresses the 4-6 graders more than if their teacher taught the same lesson.
• A local non-profit copies the one-page take home activity and includes it in goodie bags for parents who attend their Healthy Families programs.

Fuzzy Pigs and other Promotional Items: We give these small fuzzy pigs (aka weepuls) out at the annual the National JumpStart Teachers Conference and the California JumpStart Teachers Conference.   Teachers love to use these during their financial education lessons as prizes for the students.

Weekly Savings Tip:  Although the Feed the Pig campaign targets 25-34 year olds, many of the campaign’s messages are relevant for all ages.  The Weekly Savings Tip, which is sent out via email every Monday, provides easy to follow guidance for managing money.  Many subscribers forward this to their children and friends.  One woman, who I would guess to be over 70, told me she faithfully forwards each tip to the members of her women’s group.  She reports that they all find it to be very useful information.

360 Retirement Calculator: A little closer to home, I have a friend who uses this calculator on a monthly basis to ensure he’s on track with his retirement savings, as well as before he makes any major changes in his retirement planning.  He’s set to retire at 55!

How do you use the free financial education tools offered by the AICPA and your state CPA society?

Melora C. Heavey, Senior Manager - Communications, American Institute of CPAs. Melora manages the CPA profession’s volunteer effort, 360 Degrees of Financial Literacy, and the award-winning public service campaign, Feed the Pig.  She serves as the staff liaison to the National CPA Financial Literacy Commission, the leadership body and primary spokespeople for 360 Degrees of Financial Literacy.

- See more at: http://blog.aicpa.org/2013/01/spreading-financial-well-being.html#sthash.WDNuTn2W.dpuf

5 for 5 - 2013 Week 1

It's Monday! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.

Last week's goals:

1. Read 10 newspapers.

     Done!  Read 16 (another 2 weeks worth!!)

2. Get coupons organized.

     Nope.  I added to the pile without organizing them...

3. Rest a bit more.

     Done!  Had 2 days off last week which really helped me kick this flu.

4. Write 3 more posts this week. 

     Done!  See them here, here and here

5.  Clean out my closet.

     I put the clothes that were on the floor into a bag.  So I will give myself a quarter.

 3 1/4 isn't too bad..... here's hoping next week is better.

This week's goals:

1. Read 10 newspapers. I will get caught up!

2. Get coupons organized.  There were lots of coupons in  yesterday's paper, so I really have to do it.

3. Continue cleaning out my closet.

4. Make my reservations for Milwaukee in early February.

5. Write 3 more posts this week.

It's Winter!

As I was looking through the blogs that I follow, I realized that many of them are in warmer climates.  I know some of my followers are local to me, but I also know others are far away.

So here are some pictures from the world outside my door these past 2 weeks:

Yes, lots of snow.  This snow was from 2 storms: the Thursday after Christmas when we got about 12 inches and then that Saturday between Christmas and New Year's when we got another 6 inches.  Most of it is still here too because after the snow came it turned bitter cold and spent about 36 hours hovering at or below 0 degrees F.

The bottom picture shows and area where my hubby snow blowed much of it away so could have a place to park our cars and the dog could have a place to go out (which she really doesn't want to do).

New Year, New Word

Late last year, I saw a series of words from friends on Facebook and a link. 

After the difficult year I had last year, I wanted to focus on something.  So I thought about it and made these two posts on my Facebook page on January 1:

My goal for 2012?  To be a teacher and an advocate in my own way for all those kids and parents with special needs that need help.  Special needs are not illnesses and are not contagious, so we need to teach others too.  Will you join me in any way you can?  (commitment not needed now, but consider it).

My word?  Helpful.

I think I was helpful.  I started this blog. I continued my Facebook group for those with special needs. I held a fundraiser.  I supported others. I wrote a couple of magazine articles.  Only my friends and family can tell me if I really was helpful.

One of the other mothers who has lost her son to Niemann-Pick, Type A, posted her word on her blog the other day.  And I do understand where she and her family are coming from. 


So what is my word for 2013?  

BELIEVE

Dan's Life in Pictures: 7-12 months

Every so often I see a great deal on these Shutterfly books.  Since all we have is memories and pictures of Dan, I take my time and put the books together and have them printed.  Here is one of the latest ones I put together.  (Disclosure: I have not received any sort of compensation from Shutterfly... I just love their books.)

Click here to view this photo book larger

Photo books are the perfect gift for any occasion.