A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Friday, January 31, 2014

A Different View

It's that time of year again.  I've headed off to Milwaukee for the winter board meeting for the NNPDF.  For a different perspective, I took some photos from the plane window.  Here are my favorite 5:



1. I think these are the Finger Lakes in central New York.



2. Snow covered - somewhere between Albany and Detroit



3. Partially frozen lake while landing in Detroit for my layover.



4. Detroit.  The center of the picture had a cluster of tall buildings.



5. Detroit at night.



It was too dark to take pictures flying into Milwaukee.  I admit these aren't the best of pictures, but when I had this idea I was already in the air and it's tough to take pictures out the window!!!

Thursday, January 30, 2014

Thumping Thursday Jan 30

No Thumping Thursday bloghop this week.  Katrina at Mom in the USA is the host. I know she is very pregnant so she probably got caught up in baby things.  Stop over and wish her well.

Wednesday, January 29, 2014

One word

Many bloggers are focusing on one word for their year this year.  I don't remember if it was last year or the year before, but I participated in the one word challenge by posting my word for the year on Facebook.  But I forgot about it and never followed up. So by posting it here, I am holding myself accountable.

My one word for 2014 is "Focused".

I want to enjoy what is going on in my life - from spending time with my husband or my daughter to focusing on one item at a time when I have multiple things going on at once.

*Focus on one thing at a time. Minimal multi-tasking.
*Focus on my family. Kids are only young once. Dan taught me that.
*Focus on what can be done in the amount of time I have.
*Focus on my plans and not letting other people disrupt my plans.

By focusing on what is important to me, I hope to reduce my stress and enjoy my life more.

To read more about choosing one word you can go here and here.

Monday, January 27, 2014

5 for Five - Jan 27

{5forFive}


So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were the goals from last week:
1. Read 2 newspapers per day (a SMART goal from Say Goodbye to Survival Mode) I read 2 newspapers 3 days this week. Not as much as I wanted, but it's a start.
2. Write 3 blog entries this week (another SMART goal) I did that! 5 Things I love, Angels, and Snow Tubing
3. Use my 2 free evenings this week productively. One evening was spent cuddling with Shelby and the other was a bit productive. So, yes, both were productive.
4. Spend time enjoying Shelby. Done! How can I not?
5. Wash the next sized clothes for Shelby. I pulled them all out on Thursday night, hubby washed them all on Friday and I am still putting them away. But they are washed!

I'm calling last week a success!!!

So what are my goals for this week???
1. Finish putting Shelby's clothes away.
2. Read 2 newspapers a day. I'm cheating on this one. I read 2 this morning before I posted this...shh...
3. Post 3 blog entries this week. I love writing, it's just finding the time some days.
4. Create several Shutterfly photobooks. I have coupon codes for 2 or 3 books that expire on 1/31/14. So I better make and order them!
5. Get my NNPDF paperwork organized.

Ok, who is with me?  Let's keep each other on track to a better year!

Sunday, January 26, 2014

Snow tubing

We went to Willard Mountain for an Elks snow tubing event. Faron and I have been skiing before, but never tubing.

It was a but chilly, but was warmer than it had been.  With fresh fallen snow the only issue was the snow blowing in your face.

Saturday, January 25, 2014

Two Angels

Riley Smith (NPC)
11/14/1998 ~ 01/19/2014

Riley Smith (NPC ~ Age 15)




Our Dearest NNPDF Families and Friends,

It is with heavy hearts that we must inform the NPD Community that Riley Smith lost her battle with Niemann-Pick Disease, Type C, after a 9 day valiant & courageous battle. Riley earned her wings to join her brother, Braden (age 10), who lost his battle with NPC in 2006.

Riley's Aunt, Terri Gillespie Ford, asked us to share these words with the community:
"Riley didn't lose anything, she won this battle for a better existence in a world where children walk, talk, and eat - lots and lots of chocolate!! Riley gave her love each and every day and showed the world your body is nothing, your spirit is everything! And choosing to give it for others it what this world should be about. We will miss her terribly! She fought with everything, and passed into heaven peacefully being held in the loving arms of her parents, Trent & Julie Smith."

This comes as a blow to us all who were enchanted by her bright smile and lovely red hair. She will be remembered for her courage, her spirit and her enduring love of her family and friends. Please know that of the entire NPD community is with you in your grief. May the comfort and love of friends and family carry you on in the days, weeks and months ahead without Riley as a part of your lives.

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

I have also personally learned of another angel: Kirsten Smith, 39 years and 11 months old who passed away on Thursday 16th January, 2014. Kirsten was from Australia. “Gone to meet her brother Matty in heaven”. A tribute to Kirsten is here


These two angels are from different families, even though the last names are the same.


Please take a moment of silence for these families.

Friday, January 24, 2014

Five Things I Love Right Now

I found a wonderful group of bloggers from my geographic area of the world: The Northeast Bloggers! Every Friday they do a Friday Five hop where blogs post list of five things - anything! So here goes my first Friday Five, things I love right now:

Northeast Bloggers

1. I love my husband's heated jacket. Having to go out in this bitter cold is never fun, and having to stand waiting for a bus for 15 minutes is even worse. I've tried the long johns and cordoray pants. I don't mind if my legs are cold, but if my body is, then I am cold. Hubby bought himself a DeWalt heated jacket for Christmas and graciously let me borrow it for this lovely weather we are having. (It is currently 2 degrees but feels like minus 12 degrees. Brrr....)

2. I love spending time with my baby. I just wish I could do more of it. Sigh.... But a working mom must do what a working mom does.

3. I love my Keurig. After going through a few coffee pots in a short period of time, we asked for a Keurig for Christmas. This is the best thing. Now there is no wasted coffee, we can have what flavor we want (even hot chocolate or tea) and there is no mess to clean up.

4. I love mass transportation. No more navigating traffic or accidents or stress of driving and the other drivers on the road. I can read a newspaper, catch up on Facebook, or write a blog post. With 30-45 minutes each way, it is a nice way to get into "work mode" and then out of "work mode" before I get home.

5. I love being involved with my non-profits. More and more I've been finding that I love spending time doing things that help the community. Whether it is connecting with other Niemann-Pick families (or other families with rare diseases) or helping at the Elks, I'm finding that I would rather do things that help others.


So there you have it. Five things I love on a Friday.

Thursday, January 23, 2014

No Thumping Thursday BlogHop This Week

I have been thrilled to be able to co-host the Thumping Thursday bloghop the past 3 weeks. This week there will be no bloghop. Please come back next Thursday.

Tuesday, January 21, 2014

5 for Five - Jan 20

{5forFive}


So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were the goals from last week:
1. Start organizing the tax documents. I know what documents I have received and I know which documents I still need.  I already have the software.
2. Finish putting the Christmas stuff away.  Yes, some of it is still out, but we took it out just a few days before Christmas. With some help from my hubby it is all put away.
3. Implement some of the Say Goodbye to Survival Mode ideas. I wrote about the book yesterday and have started to implement some of the ideas - at least in my mind.
4. Enjoy watching Shelby explore her world.  She is starting to reach for her toes and is amazed at all the places we bring her and her surroundings.
5. Do some NNPDF work. Got quite a bit done.

I'm calling this week a success!!!

So what are my goals for this week???
1. Read 2 newspapers per day (a SMART goal from Say Goodbye to Survival Mode)
2. Write 3 blog entries this week (another SMART goal)
3. Use my 2 free evenings this week productively.
4. Spend time enjoying Shelby.
5. Wash the next sized clothes for Shelby.

Ok, who is with me?  Let's keep each other on track to a better year!

Monday, January 20, 2014

Book Review: Say Goodbye to Survival Mode

Ok, here it is....my review.  Over the past few weeks I've been posting about the 7-Day Challenge (which I turned into a 7-Week Challenge).  That was just a small sampling of "the small things" that are included in Crystal Paine's new Say Goodbye to Survival Mode.

 

So what is this book all about?  It is a personal account of how Crystal hit rock bottom by trying to do too much and her path out.  There are so many good points in the book, I want to highlight a few that really hit home to me:

  1. "I had more control over my life than I realized.  I could stop the madness.  I could eliminate the chaos.  I could start setting boundaries.  I could start saying no.  Yes, I was the problem.  But I was also the solution."  (pg. 7)
  2. Create a personal priorities list (pg. 13)
  3. "What works in one season of your life might not work at all in another season." (pg. 15)
  4. "Living with purpose means wisely choosing and committing to a few of the best things for the season of life you're in." (pg. 25)
  5. "By saying yes to the best means focusing and streamlining your time, energy, and efforts on what matters most at the time." (pg. 25)
  6. "No matter your age or aptitude,  you have special talents, abilities and interests - things you love to do, things you do well, and things that make you feel alive." (pg. 28)
  7. "Instead of listing out the many things I wanted to get done in a day and trying to squeeze them all in, she told me to start with the time I had to work with - twenty-four hours - and then divvy up my responsibilities and priorities into time blocks that fit that time period." (pg. 35)
  8. "Don't forget to leave some margin room.  You'll need this breathing space for when life happens." (pg. 38)
  9. "If you want to be more productive, you need to become the master of  your minutes.  Do you have short five-minute windows of time here and there?...Do something productive." (pg. 47)
  10. "We only have one life to live.  In order to make the most of it and live intentionally and purposefully, we have to constantly reevaluate our lives. Creating and monitoring short-term and long-term goals is a life-changing way to make sure we are heading in the right direction." (pg. 55)
  11. "Goals aren't just dreams, wishful thinking, or lofty ambitions. They must be SMART - specific, measurable, attainable, realistic, and time-bound - blueprints to get you where you want to go." (pg. 57)
  12. "Change must come from within. You have to believe you can change. You have to want to change. And you need to have something worth changing for like an inspiring, audacious goal.  The bottom line is if you're not willing to put forth the effort, you're never going to get very far in life." (pg. 88)
  13. "Focused intensity is zeroing in on one specific project and giving it your entire concentration and energy for a determined length of time." (pg. 96)
  14. "...make sure when you are multi-tasking that you are actually being more productive." (pg. 98)
  15. "I think it's important that we have balance and breathing room in our lives - and in our budgets.  If we pack our schedules so full that we never take time to stop and smell the roses, we'll likely end up rushing through life and missing out on some great moments.  We'll also probably be frazzled, stressed, and exhausted much or all of the time." (pg. 126)
  16. "...give yourself grace.  Don't beat yourself up over what you're not doing.  Don't compare yourself to other seeming "supermoms". Don't stress over what's undone....Find the humor in every situation that you can.  Surround yourself with positive people and encouraging messages to help build you up." (pg. 140)
  17. "Either you control the clutter or the clutter will control you." (pg. 141)
  18. "Failing doesn't make you a failure; it makes you human." (pg. 158)
  19. "So much of the time, our exhaustion and burnout are the result of not being plugged in.  We think we're capable of handling life without constantly renewing our power supply." (pg. 201)
  20. "You are never going to be exactly where you want to be." (pg. 223)


Crystal provides her personal experiences along with practical advice and specific exercises that you can do to help you stop surviving and start living.  

One of my goals for this year is to get organized.  If you have been reading this blog for a bit, you know that I struggle with clutter too.  Reading Crystal's book helped me realize that I can't try to do everything overnight.  I have to take baby steps to get where I want to go.  I need to focus on one thing at a time and start making new habits for the "season" of my life that I am currently in.

But I think the biggest moment for me was realizing that I generally only have 2 hours a day to do anything.  Now you are probably thinking that can't be true, so let me explain.  I am a working mom (with an amazing stay at home dad).  Being a working mom means I am awake around 6am, out the door around 6:30am and not back home until about 6:30pm.  By the time I get my work bag unpacked and repacked, it is closer to 7pm.  I usually take over baby duty then.  I try to get Shelby to bed between 8pm-9pm (and for many months she would go down and sleep 12 hours but now we are having fits staying asleep at night).  In order to be able to get up by 6am, I should be in bed between 10-11pm.  So on a good night, I get from 8pm to 11pm to blog, organize, declutter, shower, spend time with my husband, etc.  On a bad night, I get from 9pm to 10pm.  No wonder why I feel so stressed out over things in the house!

Crystal covers many topics - from feeling like a failure to finances to setting up routines and being charitable. She talks about God, but if you don't believe in a Christian God, it isn't overpowering.  

Want a sample before you buy?  Click here to read the introduction and Chapter One. 
**I was provided an advance copy of the book for preview purposes.  All opinions are my own.  My Amazon Associate link is included above. I may be compensated if you click on the Amazon link.**

Thursday, January 16, 2014

Thumping Thursday Bloghop - Jan 16 - Guest Co-Host


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Welcome to the 
Thumping Thursdays Blog Hop!
Click on the badge to grab the code and help grow the HOP!!

By this week, most people have given up on their New Year's Resolutions.  We encourage you to continue on your journey.
Thank you for joining us this week.  It's great to have you link-up.  If you are new, WELCOME!
For previous featured posts, please see the
Thumping Thursdays Blog Hop Pinterest Board.

 

Megan



Jill
Follow on Bloglovin

April @100lb. Countdown
Suzanne @Baltimore Mom

Rea @Home For 4 Sweet Home
















NOW.....on to the hop. 
Karina - Mom In The USA
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Simple Rules:
1. Follow your hostess and co-hostesses
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  2. Add the badge somewhere on your blog.
Click here to grab the code.
4. Visit at least the two blogs before yours in the link set-up.  
Let's spread the word about this blog hop.
5. Share the Hop so others can join us and we can grow!


 
Have Fun!
By linking up to this party, you are giving Mom in the USA permission to share your posts and pictures via social media.  All features will be linked back to the original site. I am glad you have shared your links here and will try to promote as many of your lovely posts as possible each week.

Wednesday, January 15, 2014

Celebrate Your Success

Say Goodbye to Survival Mode Challenge – Day 7: Celebrate Your Success
You made it! It’s the final day of our Say Goodbye to Survival Mode Challenge! Can you feel the shift taking place in your life? You now know that you don’t need to merely survive. You are well on your way to living with direction and passion every, single day.

The best way to keep up your momentum is to set small benchmarks and a reward system to treat yourself, whether that’s a pedicure, a special dinner, or a new pair of shoes.

If you need an extra motivator on a daily basis, you can reward yourself after you’ve accomplished your most dreaded task for the day. Enjoy a piece of dark chocolate, savor a cup of coffee, or take a bubble bath. A reward will give you something to look forward to when you’re in the midst of doing your hard tasks. It will also give you motivation to accomplish them more quickly. >

Celebrate doesn’t have to throwing a party, though. Self-care is also a form of reward. It’s the daily practices that stack together to give you more joy and fulfillment. So much of the time, our exhaustion and burnout are the result of not being plugged in. We think we’re capable of handling life without constantly renewing our power supplies. It might work out fine so long as life is sailing smoothly. But when the rains of stress, change, sickness, or upheaval come pouring down upon us, we quickly start drowning.

Here’s the deal. We can’t survive the storms of life without regularly taking care of ourselves. It’s too much. Oh, we might be able to hold it together for a little while, slapping on our happy faces and pretending that everything’s okay, but we won’t be able to keep up the facade for long.

Here are a few ways you can reward yourself consistently:

Take Care of Your Health: Make sure that the foods you are putting in your body are nourishing you. It’s worth it to spend a little more at the grocery store to stock your refrigerator with healthful foods you can grab for snacks, such as fresh fruits and veggies. In addition, make sure you are drinking plenty of water, eating plenty of good protein and whole grains and taking a good multi-vitamin.

Enjoy Your Family: If you have young children, remember that they are only little once. Take time to just enjoy your children, to stare into their faces, to soak up their cuddles and smiles and giggles and firsts. Stop and listen to them, talk with them, love on them. Cherish them. And don’t neglect your husband, either. You might not have a lot of energy left at the end of the day, but at least meet him at the door with a kiss and a smile. Ask him how he’s doing. Make time for him.

This stuff is so much more important than a clean house or an organized kitchen. And if you’ve got to choose between cleaning or cuddling, always choose the cuddling. I promise you won’t regret it at the end of your life!

Laugh Often: Learn to laugh instead of cry and things will be much better all round. Find the humor in every situation that you can. Surround yourself with positive people and encouraging messages to help build you up.

Give to Others: A big part of living with intention is to give and do for others. Our lives are not just about us and how we can manage our time, organize our priorities, and live each day with passion and purpose. It’s also about looking for a need and finding a way to fill it. It doesn’t require much effort to find avenues, simple or creative, to help others. Remember, there’s no competition when it comes to giving. What matters most is your heart.

Give what you can, even if it’s a few dollars, an hour, or just a smile! Start by paying attention to the needs in your local community. Who can you help down the block, down the road, or across town? If we each do what we can, collectively, we can make a huge difference in the world as we know it.

If you incorporate some of these tips into your life, you know what will happen? You’ll ultimately see an increase in your energy stores. You’ll feel better. You’ll feel more alive. You might even find a spring in your step that you never thought you had. You’ll have more passion for life, and this will allow you to devote time and energy to what matters most versus spending most of your days just trying to make it through the day.


Today's Challenge
Jot down some things you love to do. Instead of thinking of your to-do lists, goals, and routines, clear your mind for 10 or 15 minutes and focus on the activities you enjoy. It can be anything such as reading a good book, volunteering, getting a massage, spending time with close friends, cooking gourmet meals, writing poetry, running, dancing, painting, or scrapbooking. Think of things that excite you and make you feel alive, refreshed, and energized. Write them down. Then review your list and circle one item you can (and will!) do today to celebrate the completion of this challenge.

Say Goodbye to Survival Mode

You can sign up for the Challenge at the link in the picture.

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

Ok, so I'm working on this Challenge, just like I told you I would.  But I am modifying it a bit. I'm going to work on an item a week, instead of an item a day.


This is a big challenge for me.  Ever since Dan died, the clutter has taken over to the point that I just want to through out everything!!  But my dear hubby has been patient with me and slowly piling the clutter so I can get through it.  But every time I try to get started on a pile of clutter, we have to go somewhere or do something else, so the clutter sits.  Let's see what I can get done this week.


Here is Day 1 (or Week 1).

Here is Day 2 (or Week 2) with my results from Day 1.

Here is Day 3 (or Week 3) with my results from Day 2.

Here is Day 4 (or Week 4) with my results from Day 3.

Here is Day 5 (or Week 5) with my results from Day 4.  I continued this day/week for an extra week due to the holidays.

Here is Day 6 (or Week 6) with my results from Day 5.


Results: 
I'm still making my lists from Day 1. I don't feel I'm accomplishing as much now, the same items are still on the lists.  But then again, showering is important.  Slowly the to-do list is getting longer.  I need to really limit it to 4-5 items.

I still have my list from Day 2, and look at it but I haven't added anything to it.

I'm generally sticking to my Sunday-Thursday evening routine that I created in Day 3.  There have been a couple of days where it hasn't gone great, but it takes a few weeks to make a new habit.  I'm doing fairly well with this now.

My prioritized list of things from Day 4? I always have that, and it changes day by day.   I'm lucky I remember my name the last few weeks, and finding even 2 minutes to tackle something on the list...well, that's been tricky too.  So, I will make this a renewed effort over the rest of the 7 day challenge to work on this one a bit more.  I've tried adding this to my to-do list from Day 1 to make sure I get done the items I need to get done.

Day 5 - tackling the clutter in one small area at a time.  I'm actually making progress with this now that I have identified the time blocks that I have available to do things.  There are just so many small areas that I need to tackle.

I have holding myself accountable down pretty well.  Every Monday I post a "5 for Five" post which is a link up with other blogs where we post 5 goals we want to accomplish that week.  We report on our success (or failure) the next week.

As far as today - time to start that list and try to do one thing every day "for me".  When I post my review of the book this weekend I will let you know how I am doing with this daily challenge.


Crystal's book will be released on January 21.  You can pre-order it here and get some awesome freebies!!!  You can also check in with Crystal at www.moneysavingmom.com to see how she is doing with her own 7-Day Challenge!!

Monday, January 13, 2014

5 for Five - Jan 13

{5forFive}


So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were the goals from before Christmas:
1. Tackle some of Crystal's 7-Day Challenge!  I only have one more day to blog about and I am really thinking about these daily challenges and how to implement them.
2. Re-read the preview version of her book and start implementing the ideas. I will be posting a review of the book by the end of the week with a link to pre-order the book and get over $125 of freebies!
3. Read some newspapers. Nope, didn't happen this week.
4. Enjoy watching Shelby explore her world. Oh yes! From doing pushups to holding a bottle and making faces while trying new foods....I'm enjoying all these little minutes.
5. Do some NNPDF work. Had several conference calls and multiple emails.  This is the busy part of the year, so the next few weeks will have this item on it.  It is a guaranteed item to do, so I know I will at least get one item done each week.

Ok, so I definitely did 2 items, and although I don't have anything to show for 2 more, I will call them a partial success.

So what are my goals for this week???
1. Start organizing the tax documents.
2. Finish putting the Christmas stuff away.  Yes, some of it is still out, but we took it out just a few days before Christmas.
3.Implement some of the Say Goodbye to Survival Mode ideas.
4. Enjoy watching Shelby explore her world.
5. Do some NNPDF work.

Ok, who is with me?  Let's start off the year with some goals and keep each other on track to a better year!

Sunday, January 12, 2014

Is this art?

I took a Mom's Night Out last night and went to one of the local "paint and sip" art studios where you have a few drinks and they walk you through how to create the painting chosen for the session. 

So this was the painting chosen: a cupcake.  I picked this session because it seemed to be an easy picture and I thought I could put it in Shelby's room.

cupcake


Here was the easel that was set up near the front of the room.


This is how you start the night - a blank canvas and two paper plates.  One plate had paint on it and the other was a plain plate so you could mix colors.



Step 1 was to create a light blue and paint the entire canvas.  You could make darker area if you wanted an a shadow spot that would be at the bottom of the cupcake.


Step 2 was to create the wrapper.



Step 3 was to create the frosting and sprinkles.



So how did I do?  I think it came out pretty good.

Thursday, January 9, 2014

Thumping Thursday Bloghop - Jan 9 - Guest Co-Host


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Welcome to the 
Thumping Thursdays Blog Hop!
Click on the badge to grab the code and help grow the HOP!!

How is 2014 treating you so far?  Are you succeeding at your New Year's Resolutions?
Thank you for joining us this week.  It's great to have you link-up.  If you are new, WELCOME!
For previous featured posts, please see the
Thumping Thursdays Blog Hop Pinterest Board.

 

Megan



Jill
Follow on Bloglovin

April @100lb. Countdown
Suzanne @Baltimore Mom

Rea @Home For 4 Sweet Home
















NOW.....on to the hop. 
Karina - Mom In The USA
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Please leave a comment if you are a new follower!

Simple Rules:
1. Follow your hostess and co-hostesses
.
  2. Add the badge somewhere on your blog.
Click here to grab the code.
4. Visit at least the two blogs before yours in the link set-up.  
Let's spread the word about this blog hop.
5. Share the Hop so others can join us and we can grow!


 
Have Fun!
By linking up to this party, you are giving Mom in the USA permission to share your posts and pictures via social media.  All features will be linked back to the original site. I am glad you have shared your links here and will try to promote as many of your lovely posts as possible each week.