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.

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.

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.

2017!?

Wow!

It's crazy that it is now 2017!  Where has the time gone?

The blog has been a bit quiet lately.  Late in 2016 were a lot of grief "milestones" and I had to work through them.

November 11 - 5 years since Dan died - which meant that he had been gone longer than he was here
December 7 - Dan would have been 10 years old

And then Christmas rolled around, and it's just been busy.

I hope to be back to blogging on a somewhat regular basis soon.

So for now, here are a few Christmas pictures.

These are the GeoTrax train sets that we purchased for Dan and Daddy to play with.  Shelby has been enjoying them too.  Unfortunately, Fisher Price stopped making them so finding pieces either means paying outrageous prices for one or two pieces, or getting big tubs of random pieces for a better price as people clean out their unwanted stuff.

Milestones

Do you remember  bringing the kids to the doctor and being asked if they were doing certain developmentally appropriate tasks?  Like crawling or walking or using multiple word sentences?

For many years, I was always saying that Can wasn't doing something he should be doing...whether it was throwing a ball or potty training.

At her 3 year visit, my beautiful daughter was doing everything she was supposed to be doing on the developmental checklist.

So this is what normal is supposed to be?

I'm not used to normal.  I'm not used to being told "no" in a preschooler tantrum.  I'm not used to sitting and coloring.  I'm not used to make believe stories and playing and sharing toys.

I love all these things.  Yes, I'm exhausted. But this is what normal is.

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.

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.

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.

 

Parade

One of the things we loved to do with Dan was to go to the Charlton Founders Day Parade.  We went rain or shine most years.  This parade is the first Sunday in June every year and is fairly short but features all the great parts of a parade... fire trucks, politicians, bands and thrown candy.

We took Shelby to her first parade this year.  It is little events like this that make me realize the difference in my kids.

Faron is holding Dan

Grandpa (my dad) is holding Shelby.

How One Family Helps Another

Our Niemann Pick "family" is close, even though we are spread across the world.

Yesterday, I hosted a Jamberry fundraiser for Kelly, who lost her daughter Ashlyn a few weeks ago.  The 10 or so ladies and I had a great time giving ourselves manicures and sharing memories of Ashlyn and Dan.

You can still help.  The online portion of the fundraiser is open until at least Mother's Day.  Kelly will be saying her final goodbyes to Ashlyn on Monday May 11.  The online fundraiser is on Facebook and at my website.  At least 20% of all sales are going to help cover funeral expenses.

Oh and today, Monday May 4, is the last day to pick up this great Mother's Day Gift Set (although you don't need to be a mom or give it as a gift to your mom).  Four exclusive products (3 wraps, 1 lacquer), taffy, and pedicure tools!

But that isn't all.

Dan's Birthdays

Dan only had 4 birthdays.  I wish he had more.  This coming Sunday he would be 8.

Birth

Age 1

Age 2

Age 3

Age 4

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.

Five Faces of Niemann Pick Disease - Week 9

There are still more faces and families, so I am continuing this for another few weeks.

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It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here

Five Faces of Niemann Pick Disease - Week 8

There are still more faces and families, so I am continuing this for another few weeks.

---------------------------

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here

Beautiful Faith (above) and handsome Riley (below) are angel siblings.

Five Faces of Niemann Pick Disease - Week 7

There are still more faces and families, so I am continuing this for another few weeks.

---------------------------

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.

A difficult moment

This is the last age progressed photobook of Dan.

Our angel.  It's been 3 years and we miss you every day.

If the book below doesn't load, please click here

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.

Five Faces of Niemann Pick Disease - Week 6

There are still more faces and families, so I am continuing this for another few weeks.

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It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here

 

Handsome Zachary (above) and beautiful Ashlyn (below) are from the same family. 

Both brothers, Matthew and Timmy are affected.

 

 

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