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.

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.

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.

So, this is Christmas?

Today marks exactly one month since Jacob passed away. It has been an extremely difficult and emotional month for us, especially today. We took time earlier today to go visit Jake and brought a Christmas tree to Queen of Heaven Cemetery (innocents area), which we decorated specially for him. It was one small way that we could celebrate with Jake even though he's no longer here with us. We also welcome any family and friends to visit Jake and add an ornament to his tree.

A special tree for Jacob

The perfect ornament for a perfect boy

While everyone else seems to be busy with holiday preparations, we're trying to get into the spirit, but it's just not the same without Jake. Holidays really are incredibly difficult when you're forced to celebrate without the one(s) you love most. I never really noticed until now, but even Christmas music is harsh reminder of the reality that the holidays just aren't the same...."they're singing deck the halls, but it's not like Christmas at all" and "I'll have a blue Christmas without you, I'll be so blue just thinking about you." For now, we're trying our best and even took the time to decorate a tree at our home, so that Kelly could have a special first Christmas.

In my mind and in my heart, I know that Jake is watching over us. Earlier this week I had a particularly rough day and was missing Jake a lot. Just when I was reaching into my purse for some tissue, I found a small jingle bell. I have absolutely no idea how it could have gotten into my purse since I haven't been out of the house much since Kelly was born and we hadn't yet pulled out our Christmas decorations. I know many people look for signs after the passing of their loved ones and we've seen several, most of which we have not really shared. That jingle bell was something special that I needed in that very moment.

This was the first ornament that we hung on our tree at home. It's an angel from Jake's godparents that says "Forever Our Angel Jakey Boy"

 

A Little Joy in Our Lives

On Monday night, we welcomed our baby girl into this world. Meet Kelly Joy Brooks, our (not-so-little) 8 lb 14 oz and 21 3/4 inch long cutie. If you were wondering about how we came up with the name, Kelly is my maiden name and Joy...well, we wanted to somehow incorporate Jacob into the life of his new baby sister and being that December is the season of  'Joy' it seemed perfectly fitting. Although we are so heartbroken that Jake did not get the chance to meet his baby sister, we know that she will always have a very special angel watching over her.

Little miss Kelly Joy Brooks and her cute little footprints.

It has been an incredibly emotional past few weeks for our family, met with both excitement for the arrival of Kelly and extreme sadness over the passing of Jacob. We made sure that Jake was watching over us all during Kelly's birth, as we both wore our persevere wristbands and angel necklaces, which were given to us after Jake passed. The angels are carved from Jerusalem stone and have a matching piece that we each placed with Jacob. We kept the other pieces for ourselves so that we can always keep Jake close to our hearts.

Brooks Family

Amazing photo that Grandpa Paul took. If you notice, Josh is wearing his angel necklace.

As we're settling in at home and getting used to our new routine (hmmm...what routine is there really with a newborn!?!), we're reminded of Jake constantly. Every little thing Kelly does we are comparing to Jake and often find ourselves saying Jake's name in place of Kelly's. I actually had a pretty emotional time at the doctor's office this morning when I tried to check in for Kelly's first appointment and found myself checking in for Jacob. We have been to so many medical appointments for Jacob over the last two years and it's just going to take us time to adjust. I don't honestly know how you "adjust" to losing a child, but for now we're just taking things a day at a time, just like we did after receiving Jake's diagnosis. We want Kelly to know how very special Jacob was to us and we are going to use all the wonderful lessons Jacob taught us to make Kelly feel just as loved as her big brother.

On our first night home with Kelly we read her one of Jake's favorite books - On The Night You Were Born

End of Movember

Movember and the Mo Bros 4 Jacob site started off as one of the most original fundraiser ideas, but little could we have known that it would spur the most incredible showing of love and support for Jacob. Outside of the Mo Bros 4 Jacob Facebook page, we have received so many texts and e-mails from people (and pets) with some pretty crazy mustaches. You all helped bring lots of good laughs when we needed them most!

November is going to forever be a very difficult month for our family because we lost the most special little boy. There is no way that anybody could have predicted that Jake would earn his angel wings during the very same month that people were proudly supporting the Movember cause, but in a strange way we found some level of comfort in seeing so many people who were so actively involved in sharing Jacob's story of perseverance and their support for our family (even if it was in the form of a mustache).

We are using the funds that we have raised over the past couple months to help with Jacob's funeral expenses and will be donating the remainder to the National Niemann-Pick Disease Foundation in memory of Jacob.

Here's a sampling of what we've seen this past month:

Mo Firemen for Jacob

Mo Bros for Jacob

More Mo Bros for Jacob

UPS Mo Bro for Jacob

Grandpa Mo Bros for Jacob

Mini-Mo Bros for Jacob

Mo Sistas for Jacob

Mo Mommas and Daughters for Jacob

Another Mo Momma and mini-Mo Sistas for Jacob

Mini-Mo Sistas for Jacob

Personal fave...Mo Auntie and not yet born baby cousin Mo Sista for Jacob

Mo Great-Grandma for Jacob

Mo Family Photo for Jacob

Mo Group Shot (plus dog) for Jacob

Mo Pets for Jacob

And finally, Josh sporting his Mo Daddy mustache all month long for his best little buddy

Joy of Jacob Memory Video

We wanted to share the special Joy of Jacob Memory Video that was played at Jacob's Celebration of Life service last week. Click here to view Jacob's video or click directly on the video below.

A special thank you to Jake's Auntie Kate who helped us put this beautiful video together, so that we could share a little bit of the joy that Jacob brought into our lives with others and always be able to look back on all the wonderful memories we have. This video is a true treasure that we'll be able to have forever. Godspeed little man. Mommy & Daddy miss you so very much!