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 family. Show all posts
Showing posts with label family. Show all posts

Sunday, April 7, 2019

April Showers (in the eyes)

Springtime always seems to bring me some tears.  It's an odd time of year to get sentimental and teary-eyed, but that's what grief is.

Unpacking the backyard firepit, cleaning up the yard.  These remind me of the fun times that Dan had in the backyard - driving around on his kid quad, chasing after us with sticks - laughing all the time.  I can't easily find it, but I remember putting him in snow pants because our backyard is usually soggy for most of April and sometimes into May.





Saturday, December 9, 2017

Time to slow down

Have you ever looked at your day or week and said "where did the week go?" and your to-do list was never touched?


Yeah, well I did that today.  And I realized that most of that busyness was created by others and we were just reacting to it. 

It wasn't due to things that we were planning on doing, it was all the extras that everyone else decided were important for us.

Well, after this realization, it's time to make what my daughter and husband and I want to do the priority.  We get so little time together as a family, we need to make the most of it.

So last night we went to a kids Polar Express party where Shelby created ornaments and a mug.  Today was breakfast with Santa (to benefit a local non profit) with a bounce house and putting our own tree up.  Tomorrow is a kids Christmas party for most of the afternoon.

Yes, we are busy.  To see the joy on her face as she experiences new things, and remembers things from past years, is priceless.



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.

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.

Monday, May 9, 2016

Another Mother's Day

Mother's Day was yesterday.  My Facebook feed was covered with pictures of moms with their kids or adults sharing memories of their moms who have died.

I also saw many people post about remembering those moms who don't have their children with them...due to miscarriages, stillbirth, accidents,  or diseases.  I hope more people realize that this is one day that will always be difficult for these moms.  Having a living child does not change the fact that there is one (or more) that aren't alive.

I spent my weekend doing fun things.  My mom took me and my daughter (and the guys too) to see Daniel Tiger's Neighborhood Live in Friday night.  If you don't know what I'm talking about, you don't have toddlers.  Then Saturday morning was spent with Elsa and Olaf.

Saturday evening, we ran to the store so I could pick out a pot of mixed flowers.  While there Shelby picked out a Mother's Day card for me.  It had Cookie Monster on it.  And she was upset when my husband took it away to sign it.  That simple act...her picking a card...brought tears to my eyes.  Both happy and sad tears.  I realize with the little things she does like that, how much Dan really couldn't or didn't do.

So on that note, I hope all the moms had a wonderful day, in whatever form that takes for you.


Monday, December 28, 2015

Mommy and Daughter love

As I was changing my Jamberry wraps tonight, Shelby climbed up next to me and kept asking for "stickies".  So I found some small pieces I had left.


She was so thrilled she ran running to Daddy to show him.  I am so thrilled to be able to share Jamberry with her.

While we are talking Jamberry, did you know that you can help children with disabilities receive therapy?  Every purchase of the Now I Can wrap will have $2 donated to fund grants to help disabled children attend a 3-week intensive therapy program.



Thursday, December 24, 2015

Christmas Eve or not

It's Christmas Eve and I really am not feeling all that festive.  I think the 70* we had today and lack of snow and cold is keeping me from really feeling like it is Christmas.

Shelby is tracking Santa using an app on my phone.  We took the "I hate Santa" 2 year old picture, even though all she talks about is "Santi" and "presents".



Presents are being wrapped and placed under the tree.  The Christmas train is being played with.  Things are looking a lot like Christmas around here.



I want to give her the best life and the best of me.  But it doesn't feel like I am.  Seeing her grow up, knowing that I'm missing all these things with her brother hurts. I wonder what he would have bought her, would it have been something he liked so that she wouldn't play with it? Or would it have been a Disney toy?  Something is missing, and that hole will always be there.

 

Wednesday, August 12, 2015

Chicago

The 23rd NNPDF Family and Medical Conference was held in Chicago this year.  That meant it was drivable...12 hours each way.  Yes, 12 hours in a car with a 2 year old.  Truthfully, I would do it all over again! We split the trip into 2 segments of about 6 hours each.

We had leisurely and scenic drives.  We had new experiences. We spent lots of time together.  We enjoyed our trip.

Yes, it was emotional.  There were new friends to be made and old friends to hold close.  Here is the short version of our week: https://goo.gl/photos/VJzP4rpPe8nRiBRG7

Wednesday, December 31, 2014

2015 Goals

Last year I posted these goals that I wanted to accomplish in 2014:

2014 Goals

1. Get myself organized again. 
(this will be vitally important with Shelby)
2. Read more. 
(it doesn't matter what it is, I just want to do more of it.)
3. Pay off 2 bills.
 (We all have them don't we?)
 4. Clean out some of the junk.
(We all have some.)
5. Don't sweat the small stuff.
('nuff said.)
 
 
So how did I do?

Sunday, December 21, 2014

Tree Decorating

We set up our Christmas tree a few weeks ago.  When we brought it upstairs and put it together, we were greeted with this surprise:

A teddy bear and a dove that were still stuck inside the branches near the top of the tree.  These aren't small ornaments either.

So we left them there and decorated around them.  And of course we had some help....




The train set is a Christmas Geo Trax set that we bought for Dan and he enjoyed it.  We left most of the smaller pieces in the box this year but Shelby does carry the big remote around with her.




Wednesday, December 10, 2014

An Extra Stocking

Last year I found this wonderful post about teaching kids the true meaning of Christmas - not the toys or the gifts - but being kind and helping each other.  I saved the link all year and I am now sharing it with you.  Shelby is still too small to understand, but posting it here will keep it accessible in the years to come. 

 
 
So what holiday traditions have you started for your family?

Wednesday, December 3, 2014

Our Thankgiving in Pictures

The day started out with a winter scene:




Yes, it snowed.  Well over 8 inches.  Thankfully, it was light and fluffy snow.


Sunday, September 7, 2014

Grandparents Day

Did you know that the first Sunday after Labor Day is Grandparents Day?

My first instinct was - this is a "Hallmark" holiday.  But it is a true holiday.

So to honor the Grandparents and Great-Grandparents, here are some photos:

 Four generations with Dan

Saturday, August 30, 2014

The End of an Era

If you have spent any time in the New York Capital Region, you have heard about Hoffman's Playland.  It is an amusement park designed exclusively for young kids.  It is very affordable and geared toward family fun.

This is their last year in operation after 50+ years.  So we took Shelby down to enjoy some of the fun.

Friday, August 15, 2014

A Wonderful Birthday

Can you believe it has been a year since my rainbow baby Shelby was born?  It's amazing how quickly time has gone.  Ms. Shelby is all crawling over the house, getting into things and standing on our own.

We had a nice quiet actual birthday celebration.

 With mom and dad

Wednesday, April 30, 2014

Sunday, April 27, 2014

Happy Birthday Daddy

Today is hubby's birthday.

We celebrated last night.


Wednesday, April 9, 2014

What an Elks Year!

It was about this time a year ago I was writing about the honor my husband received being elected Exalted Ruler (CEO) of our local Elks Lodge.

His term technically ended on March 31, however the official ceremony installing the new Exalted Ruler was on Sunday, April 6.

Here are some highlights from the past year: