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.
Showing posts with label Northeast Bloggers. Show all posts
Showing posts with label Northeast Bloggers. Show all posts

Tuesday, May 1, 2018

Book Review: Beauty in the Broken Places


I  have been fortunte to be on several launch teams.  I joined this book launch team for Beauty in the Broken Places because I could relate to Allison's journey into being an unexpected caregiver.  When I received my copy to read, I kept putting it off because I didn't know if I wanted to re-experience the emotions what I went through with Dan - the sudden earth-shattering news, the loss of the life you expect to have, and your life being changed unexpectedly.

I eventually sat down and got completely immersed into Allison's and Davy's life - from the time they met, through his unlikely stroke, and into recovery.  In reading the words, it felt like an old friend talking to me. Allison has an amazing way with words, an easy conversational style that sucks the reader into the story.

There were times I cried, because I had felt the same feelings.  There were times I smiled and laughed, because, wellw ell just can't make up what happens in life.  It was hard to put the book down, even knowing how it ends.

But, overall, it's about the strength of two people who fight through the challenges that life throw at them.  Their marriage goes through challenges and they, and their marriage, come out stronger in the end.

If you have had marriage challenges, health challenges, or love to read memoirs, this book is definitely for you!

Here are just a few quotes from Lee Woodruff's forward and Allison's text:







Tuesday, October 31, 2017

The end of October

The end of October Awareness Month is here.  That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were.  Here are the final quick facts for this year:








Saturday, October 21, 2017

October Awareness continues

If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.

If you are new, you can read the detailed story as to why this is so important to me.
For the short version, grab a tissue.  My son was diagnosed with Niemann-Pick Type C at age 4 1/2.  He died from disease complications before he turned 5.

Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month.  We have an uphill battle each year, against some other more well known diseases. 

But the underdog has continued to rise - with your help.  By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation Facebook page, and donating, the disease is being identified earlier and treatments are becoming available.

So thank you.  If you are an affected family, please reach out to me.  I am happy to listen, talk, share my experience, and help you find resources to support you.






Monday, October 16, 2017

October Awareness - Vision of Hope

The National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.

In recognition of that, the Vision of Hope Campaign is encouraging donations of $25 in recognition of the 25 years.

In addition, I am giving 25% of all Jamberry sales during October to the NNPDF.

And I can't forget about the information squares for this week:





Sunday, October 8, 2017

October Awareness has begun

Every October I post information about Niemann-Pick Disease.  October is the month selected to share Awareness.  Yes, we are in an uphill battle against some other awareness months.  But we persevere.

This month, I am donating 25% of all sales from my Jamberry business to the NNPDF.  In addition, my entire commission is donated for my Niemann-Pick nail wrap and a coordinating lacquer, So Presh.  Go check them out.

Here are the first 5 facts for October. Share them from new new NNPDF Facebook page






Thursday, September 21, 2017

Diapers

Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6).  I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. 

Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. 
 
The need is there for more  than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.



Let's make sure all babies have enough diapers.  Order some holiday gifts at http://jillflinton.jamberry.com and help support No Bottom Left Behind Diaper Bank!

Monday, May 22, 2017

How We Keep Sane (sort of)

Sometimes it's the random things that have an impact.

Maybe a month ago I casually posted on my personal Facebook page something about cooking is done for the next 6 weeks and how I spent under $300.  Immediately, the had people asking how I did it. So I answered them and then someone suggested a blog post, so here it is.

As a preface to this: it's really just 2 of us, as Shelby doesn't eat enough in any one sitting to have an impact as a "serving".  And we primarily focus on dinner - and I usually take any leftovers to work.

Step 1: I look in the freezer for what we still have from the last cooking session, plus random packages of meat or chicken that we picked up along the way. I make a list of these two types of items.

Step 2: I review the stack of recipes we have (or cookbooks or Internet searches).  I have several different meal plans from Lauren Greutman. Her plans are based on Aldi shopping, so coupons are not needed.  From the stack of recipes we have I pick out 10 to 15 recipes and make a list of ingredients. I total the amount of each ingredient (for example: 8 pounds of chicken, or 2 beef roasts, each 1 1/2 pounds or 6 apples).

I write down side dishes and spices too, not just the main ingredients.

I write a list of recipe names on a separate sheet of paper, or tab them in a cookbook so I can find them when I get home. As I use multiple cookbooks, I also write down the name of the book it came from, as there are similar recipes in multiple cookbooks.

Step 3: I go through my cabinets crossing of everything I already have. Most times I'm crossing off spices, as we have quite a few. It also serves as a double check to make sure we have cooking broth or condiments that we will need.

Tip: I try to stock up on cooking broth and cooking wines, spices, etc.  Having them in the house at all times makes a quick meal easy to prepare.

Step 4: I clean up my list and rewrite it, with the totals I need per item. I try to group like items together - so meat is in one section, canned goods in another, produce in another, etc.  You can see some of the organization in this photo, although this isn't a great example.

Tip: As you get more comfortable doing this, the list in step 4 will be how you start your list in step 2.  Don't fret - it takes quite a few months to get to that point.

Step 5: Go to the store. My first stop is Aldi for the bulk of my needs.  I get what I can, which is usually most items. From the picture above, the only items I couldn't get at Aldi were the circled items. I go to another store depending on what I still need and how much time I have.

Tip: I always pick up more chicken breasts than we need, as well as a few pounds of ground beef, and meats that are price reduced.  I also try to pick up speciality meats when they are on sale - so corned beef in March/April (sometimes the discount in April is better than the sale price in March because they have too many); turkey and ham in November/December.  These freeze well for quite a few months (if you have the space).

For those who don't know, Aldi is a grocery store. It is no frills, and usually only has 1 or 2 sizes per item - the sizes commonly used.  For example, spaghetti sauce is 16 oz, not 32.  Frozen chicken breast is in 3 pound bags.  You need to bring your own bags, and pack them. Products are in display boxes, which helps keep the items organized. There are very few "name brands". There is quite a large gluten free selection. Also, bring a quarter to use a shopping cart (returned to you when you return the cart).

Step 6: Come home and start organizing. For me, this is the longest part, so hubby and I usually work together.  Most of the meals we cook can be frozen before cooking, which saves time.  Even if the entire recipe can't be prepared ahead of time, sometimes a portion can be - like marinading meat.

We start with one type of meat (let's say chicken). I find all the chicken recipes and  we start separating chicken breasts into freezer bags.  It's probably a good idea to invest in a small kitchen scale so you can weigh meat. As he is separating chicken breasts, and cutting them up as needed, I am labeling the bags and putting in the other ingredients that can be frozen.

We do the same with any other type of meat we will be eating. Always work with one type of meat at a time. We put a paper plate on the scale to weigh the meat for each recipe. That way we can discard the plate before moving on to the next meat.

Same thing with cutting boards. Keep them separate for veggies and meat. Either wash well between uses or invest in a few.

Step 7: Make sure all the recipes are labeled on the bag. If something needs to be added to the bag when it is cooking, I usually write that on there too.  Place in freezer.

Step 8: I make a calendar of meals. The calendar includes the meals I found in the freezer plus what we just put together. I usually schedule 4 or 5 meals a week and mix up the meat flavors. As most of our meals are frozen Crock-Pot or frozen grilling recipes, we can pull out a recipe the night before (or morning of) to let it thaw.  Putting only 4 or 5 meals on for the week leaves room for leftovers or for a simple meal like spaghetti or tacos.

I also try to schedule meals early in the month​ that need ingredients that are "fresh" like peppers or apples, since I probably just purchased them.

The calendar has really made the difference for us. We can look at it and know what is planned.  It's taken the "what's for dinner question out of our daily lives"

-----
One thing I really should mention here, I am blessed that hubby is home with Shelby during the day, so he can start cooking these meals in the Crock-Pot mid-morning.

This pre-planning has eliminated MOST trips to the grocery store.  Milk, bread, eggs are still frequent trips. And sometimes I'll stop on my way home from work to pick up a bag of salad greens or some fresh fruit or veggies for dinner that night or the next.

We do try new recipes - usually a few a month. We obviously keep going back to our favorites.  And if you have a list of 20 or 30 favorite recipes you cycle through, the list prep, shopping, and meal prep, get easier each time.

I can say, this entire process does take 8-10 hours. If I can I do the first 4 steps at night while watching TV - a bit at a time.

I would love to know if this has helped you! Please leave a comment below and let me know.

Wednesday, January 14, 2015

20 Days of Writing: Day 8 - Favorite Winter Article of Clothing

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!

 
 
 
 
I don't know if I've ever had a favorite piece of winter clothing...except maybe a pair of warm gloves.
 
But now, I really do have a favorite piece of winter clothing....and it started with my husband.

Tuesday, January 13, 2015

20 Days of Writing: Day 7 - 10 Hotdogs

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!

 
 
 
Today's writing challenge is 10 Hotdogs.  So what am I going to do with this?

Monday, January 12, 2015

20 Days of Writing Challenge: Day 6 - What is Chill?

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!

 
 
 
So today is more than What is Chill - that would be easy - just show some pictures of the massive amounts of snow that we get....like this at Thanksgiving:
 
 
 
 
Today is What is Chill and How do I do it?  So here is my best rendition of being chill:
 



Friday, January 9, 2015

20 Day Writing Challenge: Day 5 - Invisible

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!

 
 
 How many times have you seen people get out of cars with the handicap placard who look perfectly healthy?  They can walk to the store seemingly fine.  The can carry big bulky items without an issue.
 
But how do you know they don't have an invisible illness?  One that qualifies them for the placard?  Or the driver is healthy, but their passenger (an elderly person or a child) isn't?
 
A mini van could really be a lift van that carries a person in a wheelchair.  Yes, the driver may be fine, but isn't the person who is in the wheelchair entitled to shop?  That person is the person for whom the placard is there.
 
 
Besides the driver of the truck being parking challenged....  the silver mini van carries a beautiful young woman who is wheelchair bound due to a neurologically regressive disease.  That mini van has a lift in it so she can get into and out of the car to get to doctor appointments.  This photo was actually in the hospital parking lot.
 
So the next time you see a seemingly healthy person get out of a vehicle that is parked in a marked handicapped spot, please realize it isn't all about them.

Thursday, January 8, 2015

20 Day Writing Challenge: Day 4 - Travel

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!

 
 
 
On this 0 degree day (or sub-zero for some of us), I couldn't be more thrilled to write about MAUI!
 
I've never been to Maui, but I have a chance to go - all expense paid!
 
 
Yes, that's right - I am working toward an incentive trip with my new business Jamberry Nails.  How to I earn such a trip?  By helping women and girls have beautiful nails!! 
 
And the best part is that the trip is over my birthday next year!  What a way to spend a birthday.  So who wants to learn more about Jamberry or try a FREE sample?


Wednesday, January 7, 2015

20 Days of Writing: Day 3 - Willy Wonka

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!

 
 
 
Today's writing challenge is Willy Wonka's Greatest Candy Making Secret.
 
 
But before I reveal what I think is his greatest secret we have to look back (thanks to Wikipedia).
 
 
Willy Wonka & the Chocolate Factory is a 1971 musical fantasy film directed by Mel Stuart, and starring Gene Wilder as Willy Wonka. The film—a film adaptation of the 1964 novel Charlie and the Chocolate Factory by Roald Dahl—tells the story of Charlie Bucket (Peter Ostrum, in his only film appearance) as he receives a Golden Ticket and visits Willy Wonka's chocolate factory with four other children from around the world. (source)
 
Charlie and the Chocolate Factory was first published in the United States by Alfred A. Knopf, Inc. in 1964 and in the United Kingdom by George Allen & Unwin in 1967. The book was adapted into two major motion pictures: Willy Wonka & the Chocolate Factory in 1971, and Charlie and the Chocolate Factory in 2005. The book's sequel, Charlie and the Great Glass Elevator, was written by Roald Dahl in 1972. Dahl had also planned to write a third book in the series but never finished it. Charlie and the Chocolate Factory (2005), directed by Tim Burton and starring Johnny Depp as Willy Wonka, Freddie Highmore as Charlie Bucket, Deep Roy as the Oompa-Loompas, and Geoffrey Holder as the Narrator, was a hit. (source)
 

Tuesday, January 6, 2015

20 Days of Writing: Day 2 - Winter Comfort Food

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!

 
 
 
Everyone has their "go to" winter comfort food when it is freezing cold outside with the blowing snow.
 
Food and Wine has a slide show of 17 recipes.  Some of them are definitely what I would call winter comfort food:
  • Hot chocolate
  • Macaroni and cheese
  • Chili
  • Beef Stew
  • Baked Potatoes
 
But what is curiously missing is soups.  My winter favorite is New England Clam Chowder - the hearty cream soup with big chunks of potatoes and onions and clams.
 
Photo from Wikipedia
 
 
So what is your go to winter comfort food?  You know, the one that you would eat all curled up in a blanket in front of a roaring fire watching the snow fall?  Yeah, that comfort food......

Monday, January 5, 2015

20 Days of Writing: Day 1 - Spilled Milk

This post is part of the 20 Days of Chill Writing Challenge hosted by A ‘lil HooHaa. Please check out the site if you’d like to see others or join in. And for those participating, take a moment and check out the other participants!



In the nursing mom world, spilled milk is the worst thing that can happen. Spilling the liquid gold that your body produces for your little one is precious.

But every nursing mom has had it happen at least once.  It could happen at work when pouring the milk from the catch bottle to a storage bag (which I did - all over the floor under my desk).  It could happen at home at the counter when pouring it from the storage bag to a bottle (which I also have done), or dropping a full bottle on the floor before giving it to your child (which I thankfully haven't done).

Since breastmilk is a supply/demand system, your body produces it when it thinks it is needed, so when you pump or when  your child nurses.  You can't recover what was spilled.

The first time I spilled milk, I did cry - because as nursing moms you are trained that you can't waste any bit of that liquid gold.  The second time I spilled milk, I kicked myself, but realized life would go on.  Because life does go on.  And unfortunately one day you won't have to worry about spilling milk because your child won't be drinking the liquid gold.  So there is really no need to cry over spilled milk.  Yes, you can't get it back, but your child will not miss it.  Clean it up and pump or nurse some more.  It will do your body good.




Also linking up to these lovely Mommy bloghops:

The Life Of Faith

Time for Mom


Thursday, July 31, 2014

Christmas In July

The Northeast Bloggers Network hosted a Christmas in July party with Secret Santas.  Those members of the Network interested in participating signed up and then were assigned another blogger to be the Santa for.
 https://sp1.yimg.com/ib/th?id=HN.608009232945711745&pid=15.1&P=0
The Santa was supposed to review their blog and any other social media accounts that they had to "get to know" them.  Once you "got to know" your recipient, you went out and purchased items that reflected who they are and mailed them  to the recipient.


So what did I get?

Friday, March 21, 2014

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.