5 for Five - March 31

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).

Here were the goals from last week:

Guardian Angel Monica

A few weeks ago I wrote about five rainbow children - babies born after the loss of another child.  Today's post is about Monica and Bella.

Teleworking Benefits

I am incredibly lucky to be able to telework from home one day a week.  Couple that with my oddball work schedule which gives a full weekday off. So I have 3 (non consecutive) weekdays at home every 2 weeks.

I started my oddball work schedule about 18 months before Dan died and I began teleworking 1 day every other week a few months before Dan died but it is nice to now have that 3rd day.

So here are my benefits to teleworking: 

Rare Disease Webinar on Navigating Insurance

Global Genes has announced a new webinar on Navigating Insurance Issues related to Rare Diseases. I have copied the webinar information below:

Navigating Insurance Issues Webinar
Date: April 30, 2014
Time: 10:00 am PT / 1:00 pm ET

Register today

Health insurance coverage for patients with rare diseases has undergone significant changes in recent years. At the forefront are changes in how the insurance industry designs and delivers benefits and new coverage options created by the Affordable Care Act.

Whether you are continuing with an existing insurance plan or newly enrolling in a Marketplace plan or Medicaid, there are lingering questions about how plans will function and what individuals living with rare diseases can expect from these new insurance options.

Find out how you can better evaluate what option is best suited for your individual needs by joining us on April 30th. You’ll learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.


The webinar will help you:

Better understand health insurance and the roles of individuals, insurance plans, employers, and government
Learn how health insurance has changed in recent years
Determine how to be evaluate plans to meet your needs as a rare disease patient or caregiver


Panelists include:

Moderator: Michael Illions, Pediatric Hydrocephalus Foundation
Larry LaMotte, Immune Deficiency Foundation
Joel White, Horizon Government Affairs
James Romano, Patient Services Incorporated (PSI)

Register today!

Being an Angel Mom

Another Angel mom posted this today to her Facebook page. She, unfortunately, had to lose 2 girls to Niemann-Pick Type C. I have shared this with her permission to help raise awareness.

There are no words to adequately describe how you feel or live your life each day, but she does a good job to trying to explain.

I can't believe today at 5:20 pm will mark 7 years that my precious Bailey Grace grew her wings and flew to heaven. It still doesn't feel real. There is not a single second that I don't think about her and wonder who she would have become.... This day 7 years ago all my wishes, hopes, and dreams died with her. It is not fair that I stare at a pink urn everyday and to be reminded of a life that once was and that my precious little girl is never coming back. A reminder of my broken heart that will never ever heal. Days feel like years and years feel like centuries. Why does any mom have to feel this?? When will it feel normal again?? Why do I feel like my life is at a stand still and everyone else's has moved forward??

Dan's life in pictures

Here is another Shutterfly photobook I created showing Dan's life - this one covers age 3 to 3 1/2.

Click here to view this photo book larger

Shutterfly offers exclusive layouts and designs so you can make your book just the way you want.

5 for Five - March 24

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).

Here were the goals from last week:

The Right Way to Grieve

Generally the world says that it takes a year to grieve properly.  Well, guess what?  There is no one answer that fits for everyone. 

Happy or Unhappy

Each morning when I open my eyes I say to myself:

I, not events, have the power to make me happy or unhappy today."

--Groucho Marx, American comedian

How many times have we gotten up and realized the coffee pot didn't turn on so there is no coffee to drink? Or the dog decided to have an accident in the middle of the floor that you stepped in with bare feet? And we decide that it is now a bad day because of these events.

But it is all in how we look at these events. Coffee pot not working? That just gives us a reason to ask a co-worker if they want to get a cup of coffee. Stepped in dog poo? It's supposed to be good luck.

Just a simple change in outlook has the power to make you happy or unhappy. Instead of finding all the negative things happening in your day to make you unhappy, find the positive things to make you happy.

Who remembers this?

Rainbows

The urban dictionary defines "rainbow baby" as a baby that is born after pregnancy loss or still birth.  The definition has slowly been expanded to include a baby born after the loss of a child, no matter what the cause.

We have five rainbow babies in the Niemann Pick Family:

1. Shelby, born in August 2013, baby sister to Daniel
2. Bella, born in September 2013, baby sister to Monica
3. Koa, born in March 2014, baby brother to Wylder
4. Baby Girl, due in June 2014, baby sister to Trek
5. Baby, due in August 2014, baby sibling to Jacob (this child is actually the 2nd rainbow)

I will be writing more about each of these blessings in the weeks to come.

A Renewal, A Rebirth

Today is the first day of spring - a time of renewal and rebirth.  The days are longer with more light and less dark. 

My forsythia is starting to bud and bloom.  The grass is starting to turn green. The sap is running.  The flowers are starting to grow.

Time to open the windows and let the fresh air in.  Time to clean out the cobwebs and get organized again.

 

I always feel better when spring is here. I always seem to have more energy and a spring in my step.  The cold and snow of winter is going away and the green of spring is starting.

What are you going to do now that spring is here?

Dan's Life in Pictures - 30 to 36 months

Here is another Shutterfly photobook of pictures of Dan's life.

Click here to view this photo book larger

Start your own Shutterfly Photo Book today.

Do my kids look alike?

Both of these were taken at 6 months of age. 

Both are playing with Cool-Whip.

Who is who? 

5 for Five - March 17

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).

Here were the goals from last week:

1. SMART goal - Prewrite 3 blog posts.  I did this.  I had a few from a few weeks that I kept moving. They all were posted last week.
2. SMART goal - read 2 newspapers a day - that should be between 10-14 by the end of the week. I read 6.  It's helping that I am separating 10 from the rest of the pile so I truly can be accountable.
3. Print some Shelby pictures to send to my Grandma since she is not "wired". Nope.  Didn't get to this.
4. Create at least 1 Shutterfly book.  I have a free coupon code that expires this week. Done!  Look for it to be posted in the next few weeks.
5. Finish the Elks brochure contest. Done.  I created a 20 page booklet showcasing our Elks Memorial Day Service.

I think that is pretty good. 3.5 out of 5.

So what are my goals for this week??? 

1.  Have a corned beef dinner.
2. SMART goal - read 2 newspapers a day - that should be between 10-14 by the end of the week.
3. Print some Shelby pictures to send to my Grandma since she is not "wired".
4. SMART goal - clean off the corner stand in the living room.
5. Start a blog redesign.


You are probably wondering what a SMART goal is.  It is a term I "borrowed" from Say Goodbye to Survival Mode: 9 Simple Strategies to Stress Less, Sleep More, and Restore Your Passion for Life by Crystal Paine.  SMART goals are specific, measurable, attainable, realistic, and time-bound.  Since all these goals are really time-bound (1 week), I just have to get better at meeting the other criteria.

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



Disclosure: Some of the links in this post are my referral links. By clicking on these links I may be compensated.

A reminder of the Beginning

The other day I created a Facebook page dedicated to the posts from this blog and other related items.  You can access that page here.

In creating the page, I went back to when it started....June 2012.

Looking back, many things have stayed the same.

I found the second post I wrote about the different "groups" I am a part of.  I still feel that these 5 groups define me and how I approach this blog:

• parent to a special needs child
• parent to an angel
• parent to a special needs angel
• parent to a Niemann-Pick child
• parent to a Niemann-Pick angel

My third post was about the first angel after I started writing.  I will be writing more about the amazing Ingram family soon.  Their life has some distinct parallels to mine.

My fourth post highlights some areas that I am starting to rebuild on: getting back into a routine and getting caught up on my newspapers.  So for those wondering why I have newspaper reading in many of my 5 for Five posts, this may explain it.

One thing that has changed is the frequency of my writing.  It used to be very sporadic and became more routine in October 2012 but then trailed off again for a bit.  It picked up again in February 2013 and then trailed off in the early summer.  I think I've been pretty consistent since then.

So for those who have been here since the beginning, I thank you.  For those who are just jumping on board now, I welcome you and hope you enjoy spending a few  minutes with me every day.

Mommy Brain

A few weeks ago, my favorite health blogger, Dr. Claire McCarthy wrote a post about Mom Messiness on the Boston Children's Hospital blog.

Huffington Post picked it up about a week later and it has made it's travels around the social media pages.

We all see those moms (and dads) seem to have it all together.  You see them out and about and the kids are all clean, they are dressed nice with hair and makeup.  Based upon that impression and talking to them - they are part of the PTA, bring their kids to sports, make these amazing meals....their house must be spotless.  And we all try to strive to get to that point.

A few weeks before Dr. Claire wrote her blog post, my favorite coupon blogger, I Am THAT Lady, wrote about being Pinterest depressed - seeing all the wonderful creations on Pinterest and knowing that she couldn't live up to the creations.  Lauren (the Lady behind I Am THAT Lady) shows you what it looks like around that perfect shot or the next day.  With 4 kids, it can get a bit messy.  But you know what?  She's a loving mom.

Crystal Paine, in her book Say Goodbye to Survival Mode: 9 Simple Strategies to Stress Less, Sleep More, and Restore Your Passion for Life, relays a story about sitting at a moms get-together where one of the mom's said she had a cleaning lady come over every other week.  She goes on to say that as moms if we aren't doing everything in our house, we see ourselves as failures.

I always considered myself reasonably organized.  Then Dan came along, and for a while I was still reasonably organized.  Then mommy brain took over - putting something down to get back to it later because he needed something and then forgetting what it was I put down or where I put it down.  Amazingly, I still had a general idea where things were.  My hubby would call looking for something and I would say look "here" or "here" and it was usually in one of those places.

Then after he died, I went through a grief period where I just didn't care.

We have a dog and a cat.  Both shed and both are messy eaters, so there is food and shedded hair on the floor at all times.  Even when Dan was alive and walking around, my house wasn't spotless.  Yes, there are times I get frustrated with the "mess" and "clutter" and throw fits about not having time to clean it up, but truthfully, I don't think I could live in a spotless house.

So here is our kitchen table - the way it has looked for a least a few years now.  The stuff may change but right now, I'm happy with my little mess.  Because I am a mom and I have a kid who is more important than having a spotless house.

Disclosure: Some of the links in this post are my referral links. By clicking on these links I may be compensated.

Thoughtful Quotes for Today

Thumbing through my personal Facebook feed over the past few days, I came across a bunch of thoughtful quotes.

(source)

(source)

Linking this post of 5 quotes to Northeast Bloggers Friday Five.

German NPA Angel

Through the interconnected world of Facebook, I have learned of another angel.  Little Hanna had NPA and lived in Germany.

Unser Schmetterlingsmädchen hat ihre Flügel ausgestreckt, um mit all den anderen wundervollen Kindern, die die Welt viel zu früh verlassen haben, zu spielen und über den Wolken zu tanzen.
Hanna Emilia Thierfelder
17. April.2011 - 11. März 2014
Wir lieben dich so sehr!

Our Butterfly girl has stretched its wings to dance with all the other wonderful children who have to leave the world much too soon, to play, and above the clouds.

Hanna Emilia Thierfelder April 17.2011-11 March 2014 we love you so much! (Translated by Bing)

Adult Angel

Patricia "Patty" Anne O'Neil (NPC)
02/27/1956 ~ 02/22/2014

Patty O'Neil, (Adult On-set NPC)

Dear Families and Friends,

The NNPDF central office received the sad news that Patricia "Patty" O'Neil lost her battle with adult onset NPC on February 22nd, 2014.

Many will recall she and her family members frequently attending the NNPDF Family Conference, most notably at the Manhattan Beach, California conference in 2005, but may have not known that behind her sweet smile was a devout lover of film and stage productions.  Patricia has an extensive background, not only as a professional theater & film actress, but also as a beloved drama teacher.

Patricia was a good woman who shared her life with many in her years as an actress & teacher, as well as those who loved and knew her personally. Her story is one of Perseverance and the pursuit of love fulfilled.

For a full biography of her amazing history, you can read Patricia's obituary: Patricia Anne O'Neil

Patty will be remembered for her youthful exuberance, caring nature, love of life and family, and generosity of heart.

"And flights of angels sing thee to thy rest." Hamlet: Act 5, Scene II

Source: NNPDF Newsline

Bragging Rights from the Oscars!!!

We won Best Picture!!! We won Best Picture!!!

Ok, Ok, I, personally, can't really claim any of the credit.  But I've got your attention.


The story synopsis from Yahoo Movie:

In the pre-Civil War United States, Solomon Northup, a free black man from upstate New York, is abducted and sold into slavery. Facing cruelty at the hands of a malevolent slave owner, as well as unexpected kindnesses, Solomon struggles not only to stay alive, but to retain his dignity. In the twelfth year of his unforgettable odyssey, Solomon's chance meeting with a Canadian abolitionist will forever alter his life.

 Here is the movie trailer from YouTube:



So what are the bragging rights?  The movie is based on real life events in a book written by Solomon Northup, who lived in Saratoga Springs.  Saratoga Springs is only about 15 minutes away from where I live and is in the same county, so I'm claiming the bragging rights!!

Here is the link to the local newspaper article about the movie and the win.

How often can you say that the Oscar award-winning Best Picture movie is from where you live?

5 for Five - March 10

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).

Here were the goals from last week:

1. SMART goal - read 2 newspapers a day - that should be between 10-14 by the end of the week.  Done!
2. SMART goal - clean up the pile at the top of the stairs.  It's sorted into where the items need to go and gone from the steps.
3. SMART goal - Package the items I want to mail.  (I'm doing this a bit at a time...)  I did one package of the two. So progress is being made.
4. Finish the elks budget.  Budget year starts April 1. Draft completed, which was my responsibility.  Now I hand it off to the respective parties for finalizing.
5. Have a happy week. With a birthday, how could I not???  (Yes, I made this one easy.)

Even with a baby with ahead cold, I did pretty good! 

So what are my goals for this week???  I have a day off this week, so hopefully I can do a bunch of these.
1. SMART goal - Prewrite 3 blog posts.
2. SMART goal - read 2 newspapers a day - that should be between 10-14 by the end of the week.
3. Print some Shelby pictures to send to my Grandma since she is not "wired".
4. Create at least 1 Shutterfly book.  I have a free coupon code that expires this week.
5. Finish the Elks brochure contest.


You are probably wondering what a SMART goal is.  It is a term I "borrowed" from Say Goodbye to Survival Mode: 9 Simple Strategies to Stress Less, Sleep More, and Restore Your Passion for Life by Crystal Paine.  SMART goals are specific, measurable, attainable, realistic, and time-bound.  Since all these goals are really time-bound (1 week), I just have to get better at meeting the other criteria.

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



Disclosure: Some of the links in this post are my referral links. By clicking on these links I may be compensated.

Fancy Dress Season

This is a compensated sponsored post. All opinions are my own.

With spring time around the corner, so is prom season. I was lucky enough to be able to go to my high school prom. I remember going from store to store with my mom to find "the" dress for me. Now I hear about schools sending kids to a few select stores and "registering" your dress so you don't wind up wearing the same dress as someone else.

Here is a picture of my prom dress. This is pure 80's style, hair and all.

Well, there is a solution to finding "your" dress and not wearing the same one as someone else, and you don't have to worry about "registering" your dress with some store. You can go to www.jenjenhouse.com and browse for that specific prom dress that is for you. To find the prom dresses, click Special Occasion Dresses and then Prom Dresses. But you aren't limited to prom dresses either.

I think this is the dress that is closest to what I had many years ago. What do you think?

I know Shelby has about 16 years to go before she will be attending a prom. And I know the styles will change quite a bit between now and then. I hope that she will let me help her pick out her dress. Looking online at websites like JenJenHouse will help her find her style. With so many styles, colors, lengths, and fabrics to choose from, I'm sure she can find something she likes.

But if she wants to go store to store, that is fine too. If she is like me, she will have to try on lots of dresses to find one that actually fits her.

We can even purchase a shawl or cape and her accessories and shoes from this website. This is truly a one-stop-shopping website!

Grief-Healing Tele-summitt

This is a public service announcement by me to all those who have lost someone - which is everyone!

About a month ago I saw on one of my Facebook grief groups a link to an online Grief Healing Telesummit. I took a look at the webpage and realized it was FREE!!! Free is good. I looked at the sessions - 2 a day for 18 days. I wasn't sure I wanted to commit to it.

I shared it with another group of moms who have lost special needs kids. Another NPC mom registered for it. So I looked at it again. And I decided to sign up for it.

All the sessions are free - 2 a day - and are available for listening up to 48 hours after the session. There is an option to purchase all the sessions so you can listen to them whenever you want, but I don't think I will go that route.

So here is some more information about it, direct from their website at http://griefhealingtelesummit.com/:

Join us for this one-of-a-kind telesummit to hear top experts reveal their BEST methods and resources to heal from loss and to live a life full of LOVE, CONNECTION, and PURPOSE!

Yes, it is possible to thrive after loss, and we are going to give you the tools and tips you need (as well as traps to avoid)!

This telesummit is right for you, if:

You have lost a loved one recently or in past and want to feel LESS PAIN, MORE HOPE, and believe in a NEW FUTURE. Education and tools will be given for the entire grief journey, ranging from the first days of loss to transcending grief, so wherever you are in your healing journey, this information will benefit you!

You are a bereavement and grief professional, therapist, coach, holistic practioner or pastoral care provider, and want to learn the best spiritual and holistic healing methods to support your clients to heal quicker with active, natural and gentle approaches using the most in demand holistic (mind, body & spirit) methods. Hold on to your seat because you are going to learn more than you can imagine!

The telesummit starts at 1pm eastern on Monday March 10 and goes until Tuesday March 17. Click on the link to learn more and register. And don't worry about forgetting a seminar - they will send you a link to listen.

Birthday Thoughts

With my 40th birthday yesterday, I figured I would make a list of the 5 things that I like about turning 40:

1. It is an easy number to remember.
2. I instantly seem wiser.
3. I've figured out what is important to me and my life.
4. I'm not afraid to try new things.
5. I'm not afraid to speak my mind.

I don't look at 40 as a bad number.  I am actually kind of looking forward to it. 

The past few years have been really tough, so maybe this is a time to turn my life around.  I guess in some way you could call it a mid-life crisis.  I prefer to look at it as "finding my path" and doing what is best for me and my family, in that order.

So if you are 40 or older, did you enjoy 40 or not?  If you are under 40, what scares you about it?

Today

 

I'm not afraid to say it - today is my 40th!  

(And yes, I had a baby 7 months ago.)

NPC Angel

Thankfully it has been some time since I have had to write an angel post. Unfortunately, we all know there are more angels to come.

Brisan Stults

August 27, 2004 - March 4, 2014

 

Brisan is the oldest of 3 boys. Parker is also affected by NPC and baby brother Duncan is not. You can read more about the family here.  The photo above was in 2009 and 2013.


This is the only service information available: Visitation is 5:30 to 7:30 Thursday night (March 6) and Funeral is Friday (March 7) at 10am both at Pleasant Valley Baptist Church in Liberty, MO.

There is an online fundraiser to help cover Brisan's funeral expenses.

Please take a moment and hug your kids tight.  If you have a candle, please light it.

Dan's life in pictures - 24 to 30 months

I have been quite lucky in finding discounts for Shutterfly books.  I absolutely love these and have made quite a few.  I've been making a series of books highlighting 6 month periods of Dan's life.  These will be wonderful for Shelby to look at when she gets older.

So here is the book for the 2 to 2 1/2 year old period.

Click here to view this photo book larger

Create your own custom photo books at Shutterfly.com.

5 for Five - March 3

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. Clean out Shelby's outgrown clothes. Done! Thanks mom for the babysitting help!
2. Mail a bunch of things that I need to get out.  I got some of them out and have more to do.
3. Read 2 newspapers a day. I read a bunch of magazines this week, so I guess those count.
4. Do some Elks things. Again, I did some of it and have more to do.
5. Do some organizing. I don't know what I was going for with this....so no.

That was not a great week. I see the excuses.  Can I do better this coming week?

1. SMART goal - read 2 newspapers a day - that should be between 10-14 by the end of the week.
2. SMART goal - clean up the pile at the top of the stairs.
3. SMART goal - Package the items I want to mail.  (I'm going this a bit at a time..)
4. Finish the elks budget.
5. Have a happy week.

So what are my goals for this week???  I have a day off this week, so hopefully I can do a bunch of these.


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

Blog Changes

Over the past week or so you may have seen some subtle changes in this blog.   After talking with a few people and really thinking about what I want to do with this blog, I made some small changes.

Don't worry, the rare disease posts and Dan memories and Shelby moments will continue.  The content isn't really going to change. 

You may see more sponsored posts - posts written by me highlighting or promoting a product or something - that I receive some type of compensation for.  These posts will be clearly identified.  Advertising has also been included.  I tried to make it as non-distracting as possible, so please bear with it.

Adding these little things helps bring more visibility and traffic to my blog.  The more people who stop in and read a post (even a sponsored post) will see information about Niemann Pick and rare diseases.  So, my goal of increasing awareness will grow and continue.

I would love for you to stay along for the ride, and invite your friends along too.

Rare Disease Month - 2014 Recap

This year, I am focusing on different people with Niemann-Pick Disease, one of the 7000+ rare diseases, and the one that took the life of my only son.

Below are links to the daily posts highlighting a family currently fighting Niemann-Pick Type C. Please take a minute and read through these stories.  There are so many people across the globe.  These are just a few.  And there are so many who have been lost as well.

1 - Katha
2 - Zachary and Ashlyn
3 - Ed
4 - Cody and Kayla
5 - Keaton, Braden and Riley
6 - Isaiah
7 - Mindy
8 - Holly
9 - Mael
10 - Ty
11 - Chase
12 - Macks
13 - Matt and Tim
14 - Julia
15 - Andy
16 - Namani
17 - Taylor
18 - Johnathan
19 - Kaiden
20 - Natalia
21 - Alberto
22 - JP
23 - Kamryn
24 - John
25 - Estefania
26 - Lili
27 - Mathias, Alix, and Zita
28 - Pieter