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.

Tuesday, September 5, 2017

School days

Well, it's happening again.  It's the first day of school.  Something we never had a chance to experience with Dan.  And every year, it hurts seeing all the kids going back to school.  I feel my heart break when I see pictures of kids that are Dan's age - knowing what grade he would be in, what he would be doing.

For some reason, the start of the school year is a trigger point for me.  Maybe it is seeing the kids get a year older.  Maybe it is seeing what they are going.  It makes me realize how much I have missed. Don't get me wrong, I love seeing the pictures. It's just something we never had the chance to experience.

Shelby is starting Kindergarten next year.  I wonder if some of these feelings will ease. 

Saturday, September 2, 2017

Conference is over... Our work is just beginning

During May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.

One major aspect of the conference is our memorial table.  This year there were 9 frames.  Still 9 too many.
Progress is being made, slowly.  In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4.  There is still much that needs to be done.

The other big highlight of the weekend is the Gala dance.  And a little girl enjoyed every minute of it!







October is coming.  That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.

Sunday, August 6, 2017

A celebration

I am so blessed to have a beautiful, healthy girl.  And this weekend we celebrated her 4th birthday.

As I sat down to write this blog entry, I realized how different the 4th birthday parties were for Dan and for Shelby.

First, there is the obvious: winter and summer.  And the other obvious: boy and girl.  These don't bother me.

The not so obvious things are what made me pause while writing.  A request for toys made for 2 year olds vs. toys made for 4 year olds.

And 4 was the last birthday Dan had.  We didn't know it at the time, though.  His birthday always felt rushed - wedged between Thanksgiving and Christmas, and usually the same weekend as the firehouse kids Christmas party where we would get Santa pictures every year.

Shelby keeps me so busy, I usually don't have time to dwell on the differences between them.  I do know that some of what we do is a reaction to losing Dan so early, and some things we were never able to do for and with him.

So we celebrate. We celebrate 4 wonderful years. We celebrate life. We celebrate a healthy, beautiful princess.

Friday, June 30, 2017

Random musings

Life and death.  It's a cycle for us all.  We don't know how long that cycle is.  So we live our lives doing stuff.  And then something happens to make you realize that the cycle is shorter than you think.  What do you do then?

We are all born for some reason. There is some "job" that each one of us is responsible for.  You may never know what it is, or it could be something spectacular.

So where am I going with this?

The past few years, I have really been thinking about who I am, what I want to do is with my life, how I want to live my life.

I've realized a few things:
1. Dan was here to help me give back after he was gone and to help me start this introspection.  Dan led me to the NNPDF. While it hasn't been an easy road for the past couple of years, the NNPDF is now in a different place and is moving in a good direction.
2. Shelby is here to make me slow down and smell the roses. She loves spending time with me doing silly things.  Her desire to be with me as much as possible has made me look at where my life is and where I want it to be.
3. Finding Jamberry and joining the company appeared to be completely "out of character" for me.  But it came along at the right time to help me with understanding who I really am and why I am involved in the things I'm involved in.

Taken separately, each can seem unrelated.  Taken together, I am seeing a different picture of who I am and what I want in and from my life.

Some people may call it a "mid life crisis" and maybe it is.  I call it discovering who I am.

Monday, June 19, 2017

Father's Day

This past weekend was Father's Day.  We went camping in Lake George (less than an hour away).

While there I was struck by the way our life is "normal" now and just how far we have come in 6 years.

You see, 6 years ago we were sitting in a hospital room waiting for a diagnosis. We had fun plans for the weekend, which we cancelled.  Instead, we spent it in a Garden reading the history of the hospital.

I had started to make a "bucket list" for Dan - things to do and places to go - so we would always have fun memories.  Well, not one thing was crossed off that list.

I found that list about a year or so ago and posted it on our pegboard.  I'm not sure if this past weekend, with playing in the Lake and riding the rides at Magic Forest, were on the list.

But one thing I did realize - you don't need a bucket list to make memories.


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"

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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, May 10, 2017

Middle of May means....

For many, it means Mother's Day, celebrated on the second Sunday in May.

Did you know the first Sunday in May is International Bereaved Mother's Day?

I saw this article the other day, What Grieving Mother's Want For Mother's Day. Mother's Day is recognized as a celebration of being a mother. But what about those who don't have their children to celebrate? Are they any less than mother?

So between last Sunday and this Sunday, please reach out to a mother who has lost their child.