We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Monday, January 28, 2013

Find the Joy in Your Life

I stumbled across the most perfect find while perusing Etsy one late night last week. Since Kelly was born, I have been doing plenty of web browsing, social media networking and basically anything else that my iPhone can do to entertain me...something to keep me awake during the late night feedings. Anyway, this [find] was just so perfect that I ordered it! My special late night find arrived nicely wrapped today and I had to share...

Isn't it perfect!?! Josh is going to hang this new wood sign above our mantel this week, so we can have a daily reminder in our home to always find the joy in our lives -- another positive way to remember our Jakey boy.

Tuesday, January 15, 2013

Here Comes the Sun

Today marks exactly two months since our sweet Jakey boy passed away. It still seems surreal. We find ourselves missing him terribly...some days are better than others, but not a day goes by that we don't miss his smiling face or the way it felt snuggling him in our arms. Our precious memories just don't seem to be enough. We continue to find comfort in visiting Jake's gravesite and like bringing him fresh flowers or special mementos each time we visit. 

These are the super colorful blue flowers that we brought for Jakers today -- they're freshly cut too!
Some days when we visit Jake we are pleasantly surprised to find special gifts, notes, or flowers that others have left for Jake. We can't begin to tell you how wonderful it is see these tokens of love for our little man because they always bring smiles to our faces to help combat the tears.

This cute little monkey greeted us today with a cheery smile : )
I came across this quote the other day and it really resonated with me. In fact, I think it's a perfect reflection of our Joy of Jacob blog and how we've chosen to live our lives despite the circumstances...in JOY!

These milestone days (2 months) are definitely more difficult for us. While it has been devastating for us to deal with the loss of our little boy, we continue to try and seek out the joyful moments in each day. Today's most joyous moment came in the form of a song that came on the radio right after we left the cemetery -- "Here Comes the Sun". This song became very special to us after Jake's diagnosis when Jake's grandpa Paul sang this song to him, while playing the guitar. We are fortunate to have a video of this special moment in time and used to always play it for Jacob -- he LOVED that song! We sang "Here Comes the Sun" to Jake the night before he passed away and it was also played at his Celebration of Life service. Even though we hear it often (by our own choosing), we never hear it on the radio...until today. Josh and I both looked at eachother and said "Jakey's song!" Just when the sorrow was seeping in, our little angel brought joy back into our day.

Friday, January 4, 2013

A New Year Has Begun

I should start this e-mail off with a Happy New Year greeting being that this is the first blog post of 2013, but it just doesn't feel right. It is hard to start this year off truly "happy" without Jake.  At this time last year, Jake was at the peak of his development and we were enjoying every moment completely unaware that he would not be here to ring in 2013 with us and his baby sister Kelly (our wish for 2012).

Jake Christmas 2011 - our best Christmas ever!
The holidays were incredibly difficult for us, but we found a lot of comfort visiting Jake often and finding beautiful ornaments and notes thoughtfully left for our little angel on his Christmas tree. We have decided to continue to decorate a tree at the cemetery for Jacob each year as a special way to remember and still celebrate with him.

Some of the special ornaments left for Jacob on his tree

I've struggled with whether or not to continue on with Jacob's blog, but today I got an e-mail from the National Organization of Rare Diseases (NORD) that inspired me -- see below from NORD:

"Thirty years ago today, President Reagan signed the Orphan Drug Act into law to encourage the development of treatments for the millions of Americans with rare diseases. 

Since 1983, more than 2,700 potential treatments have entered the research pipeline as "orphan products" and more than 400 have been approved by FDA.

There are 7,000 diseases considered rare in the U.S. affecting nearly 30 million Americans -- the equivalent of about 1 in 10 people."

This count includes far too many people who are still in need of treatments and cures for their disease,
including children like Jacob who suffer from diseases that have NO CURE and NO TREATMENT. For this very reason, I am inspired to keep the blog going. I want to continue to share the lessons that Jake taught us and ensure that we are doing all we can to continue his legacy. Furthermore, Josh and I will continue to raise awareness and help in any way possible to find/fund a cure for Niemann-Pick Disease. We owe this much to our Jakey boy.

Our wish for 2013...a resolution if you must, is to find positive ways to remember Jacob, as well as seek out kind and loving ways to support others just as others have supported us.

In fact, we're already off to a great start!
  • I contacted the NNPDF last week to find out how much of an impact we made last year and am very proud to say Jacob (along with many supporters) helped raise over $5,100 for the NNPDF in the United States, plus significant additional funds in the UK! The overall increase in awareness was beyond what we could have ever expected, including over 59,000 visits to the Joy of Jacob blog and we know the number of lives Jacob touched are countless.

  • On Wednesday, we donated three large bags of stuffed animals and toys to Children's Hospital in Oakland since they always took such good care of Jacob. The toys are given to children having medical procedures and treatments. We even included a special book written by another parent of a Niemann-Pick angel in hopes to help spread Wylder's lessons. Check out the Wylder Nation website to buy a book of your own and support a special Warrior. 

Here's to hoping that 2013 brings us closer to treatments and better yet...closer to a cure for Niemann-Pick Disease because no child like Jacob or family like ours should ever have to endure this devastating disease.