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, December 4, 2012

5 for 5 - December Week 1

It's Tuesday! (Ok, I'm a day late!) That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left.


So how did I do last week??
1. More awareness activities for Dan's Fundraiser - SUCCESS
             I posted the link to several of my facebook groups and my personal facebook page.
             I wrote letters to lots of local companies asking for donations
             E-mailed a former classmate who has contacts at a local newspaper
             E-mailed some of the other newspapers with the flyer and press release.
2. Read 10 newspapers.- HALFWAY
             I read 6 - getting there I guess.
3. Get 20 minutes of exercise two times this week -FAIL
             Total fail...unless you count running around the elks kitchen on a bingo night exercise...hmm...
4. Make fresh juice at least once this week. - SUCCESS
             I made a pineapple and granny smith drink one evening. mmm....
5. Cook a meal by myself for both of us. - HALFWAY
              I found a recipe, but that is as far as I got....


So what is the plan for this week?
1. Finish preparations for Dan's Fundraiser. I have no choice in this matter - it's Sunday Dec 9.
2. Make fresh juice at least once this week.
3. Read 10 newspapers.
4. Write my two guest blog posts and my one review post (by Wednesday!)
5. Cook a meal once this week...since I have the recipe from last week, might as well use it.

Monday, December 3, 2012

Who Am I?

 

The exact post listing all those connected is here.

I saw several posts on my blogs linking back to this Women Connect "blog hop".  I'm glad I clicked through the link, because the "hop" is closing at the end of the day.

So what is this link about?  It's simple - connecting women to other women.

So who am I?

The simple things (in order): woman, wife, step-mom, mom, working mom, mother to an angel.  But what does that mean?

Well, I grew up in a suburb of a big city.  I was a good student and went off to a small Catholic college.  I then moved out and started living on my own, started working full time and going back to school part time.  I guess it was then that I realized I was turning into a woman.

Five years later I met my soon-to-be-husband.  We had a wild year of moving into a house, learning to live together, and becoming an instant family.  That is the wife and step-mom portion of my life.  I have two wonderful step-sons.  I think both of them like me.  I told both of them from day one, that I would never be their mom, but I would be willing to listen to them and talk with them about anything.  At different points, both of them have talked with me about lots of different subjects.  They still come around.


Five years after my hubby and I met, I became a mom.  (I'm starting to notice a trend here....)  My darling baby boy is the reason for this blog.  But I will get to that in a minute.  I loved being home with my baby for several months.  Then I turned into a working mom, since I had the better job and great health benefits which we really needed.  Over the next five years, I was a mom and a working mom.  There were times I felt I was more of a mom and times I felt I was more of a working mom.  But becoming a full-time mom was not an option.  My son needed health benefits.  


During the five years he was on this earth, he had a significant amount of medical tests - lots and lots of blood work, lots and lots of ultrasounds, several hearing tests, MRIs, emergency room visits, surgeries.....  It took 4 1/2 years to find out what was wrong.

Almost five years later my son became an angel.  So my gained my latest "title" - mom to an angel.  Let me put this simply - parents are NOT supposed to bury their kids!  I will never lose any of these titles.

So much of this past year has been spent re-evaluating me.  What do I want to do, what do I want to be?  Do I want to work, do I want to write, do I want to travel??  And if I don't work, where will I find funds to do the other two?  Part of this re-evaluation period included starting this blog.  It started as an outlet to just put random thoughts and feelings.  Then I decided to create a blog post a day in October to promote more awareness of Niemann-Pick Disease, the disease that took my son's life.  I got bitten by the blogging bug and have been writing ever since.  

So there is a little bit about me...I really don't know who I am at the moment  :-)

Saturday, December 1, 2012

Thanksgiving-Reunion Weekend

Last weekend I had my 20 year high school reunion (so do the math...)  It's the first reunion we have had and I was skeptical of going.  But I am so glad I did!  I reconnected with an old friend who I haven't talked to since during high school.  I spent time with others that I haven't seen since high school!  And I found a classmate that now only lives a few minutes from me (which is over 3 hours from where I went to school).

 The favor table

 
 Some of the favors



Our school colors


Me taking pictures



Musical chairs
(boy was this competitive)

 
My husband with the "girls"
(from l-r: my best friends wife, my hubby, a teacher, another best friend and me)

 
My best friend and her husband




Since I was in my hometown area for my reunion, and didn't get there for Thanksgiving, I wanted to stop in and see my grandmother and my uncle.  I don't get to see either of them that often.  Grandma has Thanksgiving at her house every year (and in recent years has had help from her daughters in cooking).  We've missed the past few years for various reasons, so it was nice to see her this year.

Here are some pictures from other years:

My grandmother and my son





My uncle and my son (many years ago)



Friday, November 30, 2012

Christmas Trees

I grew up with an artificial ("fake") Christmas tree.  The living room had 20-25 foot ceilings, so we purchased an 8-10 foot tree.  We always had a good time decorating it and always laughed at stringing the lights. (If you don't laugh, you probably scream and cry!)

When I moved into my apartment I purchased a little 6 foot artificial tree.  I tried to have a bunch of friends over to decorate it and have a party.  I would sleep on the couch occassionally, with the lights from the tree as the only source of light.

When we moved into the house over 10 years ago, we set up my little 6 foot tree.  It just didn't seem right.  So hubby and I took off early one morning and found a real Christmas tree.  We had to tie it to the curtain rod because we could not get it to stand up straight!  We tried everything! Cutting the bottom in different directions, using levelers on the tree stand...it didn't matter...that tree was not going to stand up straight.

My step sons were surprised when they woke that morning to find a real tree and the four of us had a great day decorating it (and laughing because it wouldn't stay straight!)

We had real trees a few more years.  Sometimes it was just the two of us decorating, other times the boys would come over.  However, we could always count on the cat to help us (loose things!).

Then we moved again and Dan was born.  If it wasn't for my oldest step-son, we would not have had a Christmas tree.  You see, Dan was due between Christmas and New Years, but decided to make an appearance in early December - well before we had pulled out the Christmas decorations.  Since he was several weeks early, he had to stay in the NICU.  One Saturday morning as we were getting ready to head to the hospital, my step-son stops over and tells us he will decorate the house for Christmas for us, if we would tell him where everything was.

We came home from the hospital to a set up and lighted fake tree, hung stockings and random other Christmas items scattered throughout the house.  It was an absolutely wonderful present to us - and one less thing we had to think about.  Together we put ornaments on the tree and had some hot chocolate and enjoyed the company.

Soon thereafter we purchased a multi-colored pre-lit fake Christmas tree.  We didn't know how Dan would react to the tree, and we didn't want to risk him hurting himself on a real one (eating or poking himself with a pine needle or something else).

Since his birthday was in early December, I always wanted to make sure it wasn't lost in the hecticness of the holidays.  I would not permit our tree to go up (or any Christmas decorations displayed) until about a week after his birthday.

When we found out Dan's diagnosis, we decided that we were going to get a real tree for him last year for Christmas.  Let him enjoy the fresh pine smell, touch the prickly needles...everything.

Unfortunately, he never had a chance to experience it.  And we had no real desire to do anything Christmas-y.  So we pulled the pre-lit tree out of the bag and plugged it in.  Once.  No stockings, no nativity scene, no ornaments, no decorations.  I don't even think we wrapped Christmas presents last year.

So what about this year?  Truthfully, we haven't decided yet.  But I will let you know when I do!

Bloggers for Christmas

Thursday, November 29, 2012

Jewish Proverb

The following proverb was in an email I received this morning:


"I ask not for a lighter burden, but for broader shoulders."
--Jewish proverb



It made me think.  How much do each of us burden ourselves with stuff that we really don't need to?  Do we worry about things that are outside of our control?  Are we expected to carry all our burdens?


From the Dictionary at www.reference.com:

as a noun:
1. that which is carried; load: a horse's burden of rider and pack. 
2. that which is borne with difficulty; obligation; onus: the burden of leadership. 
3. Nautical .
  a. the weight of a ship's cargo.
  b. the carrying capacity of a ship.
4. Mining.  overburden
5. Metallurgy . the minerals charged into a blast furnace or steelmaking furnace.
6. Accounting.  overhead

as a verb (used with object):
7. to load heavily.
8. to load oppressively; trouble.


We all have stuff we carry (definition 1): backpacks, purses, computers, phones, etc.
We all have obligations (definition 2): work, school, etc.

What do we do that we feel is a burden that is not really part of the definition?  Can you shift some of the burden to others?

I admit, I have never been a great cook.  I can make some things, but I need a recipe and very rarely will I come up with something good to eat without one.  As a mother, as a wife, the societal obligation was that I would cook for my family.  Well, we would probably starve... this is an obligation I have shared with my husband (especially because he is the better cook!).

Have you volunteered to help set up monthly meetings for a group?  Do you feel overwhelmed with finding a location and getting food/drinks, etc?  Well, ask for help!

Do you do things to "keep up with the neighbors?"  Their kid plays sports and has dance lessons and gets music lessons.  Did you sign your kid up for all those things too and now you complain about having to drive them all over the place?  See if you can car-pool.  Ask your kid what interests them the least and see if you can drop that.

(And yes, I know that this entire post is the exact opposite of the sentiment in the proverb above.)


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

Sorry for the thought-provoking post today...

on to something a little lighter....
It's Thumpin' Thursday!  Follow along at this blog hop: 



There are usually about 100 or so blogs that link up, ranging from couponing, to personal websites, to DIY projects.....and the list goes on.  Check out a few - you never know what you may find!

Wednesday, November 28, 2012

A public service announcement for my blogger friends...

I've had this happen to me when some people comment on my posts, so I wanted to pass it along as a public service announcement to other bloggers....

I didn't find the setting, but I have also changed to the Google+ profile instead of keeping my old Blogger profile.

Are You A No-Reply Blogger??

This post does an incredible job of explaining it and how to fix it.
http://anyonecandecorate.blogspot.com/2012/09/are-you-no-reply-blogger-how-to-fix.html

Tuesday, November 27, 2012

I won the Lottery!!!

Gotcha!

Ok, so I've one a dollar or two on some lottery tickets, but I have never been a real big winner.

But it doesn't mean that I don't dream about what I would do if I did win the lottery.

So here is what I would do:

1. Pay off all my bills!
2. Set up some sort of annuity payout so I get a steady stream of income but don't have access to blow it all.
3. Set up a foundation to help other families with Niemann-Pick Disease to cover the costs of treatment, since most insurances don't cover it.
4. Travel the country in an RV.
5. Cruise around the world.

Obviously the more I win, the further down the list I can go.

What would you do if you won the lottery?