A Little Bit of Heaven

Today I felt the urge to share something very personal that's been on my mind A LOT lately...

A few weeks ago, the mother of another precious angel who passed away from Niemann-Pick had wrote something on her blog about how she has dreamed of her son. Since reading that blog post, I couldn't stop thinking about my own dreams. Honestly, this is something that I've thought about for four long months - since November 15th to be exact. I simply can't recall having a dream with Jacob in it since he earned his angel wings. But, why??? I miss Jakey so very much and think about him all the time, but why haven't I dreamed about him. Surely, I would have remembered dreaming of his sweet face.

I started doing a little research (okay, I Googled it) and read quite a bit about dreams. I'm not going to get into all of what I read, because after all, you can't believe everything you read on the Internet, right? For now, I feel (for the most part) at peace knowing that I am getting a glimpse of my little angel in other ways. Time after time again, our little man sends signs that he's looking over us -- just when we need them most.

A little bit of Heaven shining down for me to see tonight -- beautiful streak of rainbow sky

On Sunday, Josh, Kelly and I went to visit Jakey. Right before we left, Josh told me "you have a visitor," and picked up a little ladybug who had flown onto my shoulder. Now, we've all heard that ladybugs are good luck, but I can prove it!

A few days before Jacob was born a ladybug flew onto my great big baby belly, which I thought [at the time] to be a very good sign. After Jake was born, we used to read him one of his favorite books On the Night You Were Born, which had references to ladybugs...so again, I felt the significance of the ladybug. Shortly after Jake had his G-tube surgery, we took him for a little swim on Father's Day and while sleeping in the pool in Josh's arms (yes, he was very tired) a little ladybug wandered around on his hat. It would seem that we had lots of luck coming our way!

On the Night You Were Born...one of the reasons why ladybugs make me smile : )



Can you spot the ladybug on Jakey's hat? It's right on the brim of his hat above his left eye.


Some people believe that when a ladybug lands on an object, that object will be replaced by a new and improved version. I've also heard that if a ladybug lands on you when you are ill, it will take away the illness. Maybe, in some way these things are true because Jacob is no longer suffering from his illness and is free of the pain; no doubt an angel in Heaven. Now, I have mixed emotions about the "lucky" part. I do know how lucky I am to be the momma of the most precious boy I've ever known. Jacob has been my greatest teacher in life and I love him more than words could ever express!


Marks On Our Hearts

Last Friday marked 4 months since Jacob earned his angel wings.

Today marks exactly two-and-a-half years since we first laid eyes on the sweetest little boy that we've ever been privileged to know.

I wish I could say that things are getting easier, but I'd be lying. It's often more difficult to know that we haven't been able to hold Jacob that much longer...to know that the last time I saw Jakey was so many days more than I could ever have imagined being without him. Every mark on the calendar reminds us of how much we miss Jake -- each day that passes, each monthly mark on the 15th, and especially every holiday.

Another "marker" that I have waited to share is Jake's headstone, which was placed at the beginning of February. I've waited to share pictures, so that others would have an opportunity to visit and see it in person, as it was incredibly difficult for Josh and I to first see it...most days, it still is. Perhaps I wasn't emotionally ready to share it because it made things that much more real. This marker is one that no parent should ever have to see, but it offers us a way that we can still see Jakey's handsome little face when we visit.

In retrospect, a headstone just doesn't capture the extraordinary life that Jacob had, nor can it express the immense amount of love that was felt for our sweet boy -- it's just a harsh visual reminder of what we've lost.

The wording at the bottom says:
You brought joy and love into the hearts of many.
Love you forever.
"Love you forever" comes from an excerpt of one of our favorite books that we used to read together.

A close up of his picture, which was one of our favorites taken on his 1st birthday.

We miss Jacob so very much and we know our lives will never be the same without him in it. That said, our lives are forever changed by every precious moment we spent with him. Jacob left a permanent mark on our hearts and filled them with so much joy and many wonderful memories.

I love this quote and it's one that we included on the program given out at Jacob's Celebration of Life.

Irish Blessings

Wishing all my fellow Irish family and friends (and those who wish they were) a wonderful St. Patrick's Day tomorrow, especially our little angel Jacob. I'm thankful for having a family that has always celebrated our heritage and taught me that family matters most. Missing you so very much little man and remembering you on your very first St. Patty's Day.

Our little lepra-cutie wearing his 'Wee Jacob' onesie. Yet, another one of Jakey's nicknames.

May the road rise to meet you

May the wind be always at your back

May the sun shine warm upon your face

May the rains fall soft on your fields

And until we meet again

May God hold you in the palm of his hand.

- Irish Blessing

Momma made you an extra special green St. Patty's surprise with a lucky clover and green glass "J"

Sláinte!

You Care About Rare!

A gigantic THANK YOU to each and every one of you who helped to raise awareness on Rare Disease Day!! My Facebook and Instagram feeds were completely filled with pictures of Jake, and of so many people proudly wearing Joy of Jacob PERSEVERE wristbands, blue jeans, and handmade ribbons. A family friend of ours (a teacher) even had her entire class wear jeans to school and they shared at their morning assembly what Rare Disease Day meant to them. Simply amazing! We are so very grateful for the immense amount of love and support that we continue to receive. Unity creates HOPE!!

Here's a small sampling of what was plastered all over the social media networks for thousands to see!

Baby sister Kelly helping raise awareness for her big brother

Special thanks to my amazing work peeps for the handmade ribbons and signs for Jakey

Jake's supporters at Dalala's Daycare...check out that cute "Wear That You Care" sign : )

It is our hope that by raising awareness, one day children won't have to suffer from Niemann-Pick and other rare diseases because there will be better genetic testing and more funding for medical research that will lead to cures!

Admittedly, the day was bittersweet because it was a sad reminder of why we have to advocate for rare diseases like Niemann-Pick. We miss Jake so very much! There are no words that can truly explain what it feels like to hear that your child has a rare terminal disease with no cure. And, there are no words to describe the suffering we have felt after experiencing the most devastating loss of our little boy who we love with all of our hearts. We HATE Niemann-Pick Disease!!! We hate it for slowly taking our son away from us bit-by-bit and for forcing us to watch our brave little man suffer, while depriving him of the simplest milestones and pleasures that come so naturally to other children. NO child and NO parent should ever have to experience what we went through, but -- they do! That's why it is so imperative to raise awareness.
These are some of the beautiful faces of the children (our NPD family) affected with Niemann-Pick during Jacob's lifetime and links to the blogs of our fellow type A kiddos. Click on the child's name to view their blog.

PERSEVERING

Quinn - Our sweet friend Quinn has become quite the celebrity! News of this special girl and her parent's efforts to give her the most wonderFULL life possible is spreading all over -- she was even featured on people.com.

Riley - Handsome little red head. He reminds me a lot of Jakey and was born just a few days before him.


















Amber - the cutest little kiwi from New Zealand

~ ANGELS ~

Mia - We never have connected with her parents, but she has pictures posted on her one and only blog post.

Kaitlyn - Curly haired cutie

Trek - The Adventurist & world-wide traveler

Wylder - A true Warrior

Thank you again for all your love, support and awareness efforts!

"Alone we are rare, but together we are strong!" - Global Genes Project

7,000 Bracelets for Hope

Some time ago (before I got pregnant with Kelly), I had connected with a genetic counselor who was very interested in hearing about our family's experience caring for a child with a rare disease. The counselor had been conducting some research for the Global Genes Project, which is a wonderful non-profit organization providing patient advocacy for people/families affected by rare and genetic disease diseases. FYI - If you've been following the blog, you've probably heard me mention this organization before. Well, after speaking with this genetic counselor, I got in touch with the organization to learn more about it. From that point, I was inspired to share Jacob's story in an effort to raise awareness and support for Niemann-Pick Disease, in hopes that it will somehow/someway lead to a cure. That was nearly one year ago, on Rare Disease Day.

One of the awareness efforts that the Global Genes Project is currently running, is the 7,000 Bracelets for Hope campaign. The number 7,000 represents the 7,000 different rare diseases that impact approximately 30 million Americans, including our little angel Jacob. People from all over the United States donate beautiful handmade blue bracelets, which are then gifted to those affected by a rare disease. The blue color comes from the connection to blue jeans; sort of a play on words with "genes", since most rare diseases are caused by faulty genes. We submitted a request to receive bracelets and just happened to get our bracelets in the mail just in time to wear them at Jacob's Family & Friends fundraiser back in September. The bracelets are such a special and meaningful gift that connects us to a very important cause, while at the same time raising awareness. I wear my bracelet for hope along with my Joy of Jacob wristband and other bracelets that I've been gifted -- a simple way to show support for those afflicted with rare diseases and most importantly, to serve as a visual token of my love for my little angel Jakey.

I should also add that I connected with the designer (donor) of this bracelet via e-mail shortly after Jacob passed, just to thank her and let her know how much her small act of kindness meant to me. In return, I received the most thoughtful e-mail response from her...thanking ME?? She had spent over an hour and a half on Jacob's blog reading about our journey with Niemann-Pick. I later found out that she had made a donation in Jacob's memory to the Niemann-Pick Disease Foundation -- so incredible! The kindness and generosity we have experienced through everything with Jacob has taught us many things...

• Sometimes it's the little things, that mean the most
• No act of kindness (no matter how small), is ever wasted
• Never underestimate the kindness of strangers

My beautiful bracelet for HOPE, complete with a little angel and reminder to keep the faith.

The Global Genes Project promotes that "Unity creates HOPE," so I encourage you to visit their website, 'friend' them on Facebook, and if you're super crafty, perhaps you can even donate a special bracelet or two to those affected by rare diseases.

** Reminder: Don't forget to WEAR THAT YOU CARE this Thursday, February 28th. Rock those jeans and sport your Joy of Jacob wristbands to help raise awareness for Niemann-Pick Disease and other rare diseases. **

Wear That You Care

We need your help!! On Thursday, February 28th, we'd like to ask that all of our friends, family and Jacob supporters join us in observing Rare Disease Day.

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year -- a rare day) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

For those of you who have followed Jacob's blog, you probably already know that Niemann-Pick Disease is among one of the 7,000 rare diseases that exist. Jake was one of only four children in the United States living with Niemann-Pick type A before this horrid disease took him from us. The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide. Let's raise some awareness so that we don't have to read awful statistics like this. Better yet, let's raise some awareness so that some day children like Jacob will no longer have to suffer from rare disease because there will be better genetic testing, more research, actual treatments, and CURES!!

So, what can you do to show your support??

• Post Jacob's picture on your Facebook page. Heck, use it as your profile picture for even more exposure! Make sure to tag @GlobalGenes in all your pictures
• Wear your blue Joy of Jacob PERSEVERE wristband(s) and post pics to my/your Facebook page wearing them along with messages of support for Rare Disease Day. Send me an e-mail ASAP if you need a wristband...we still have a few left.

• Join the Global Gene's Project's Wear That You Care movement and wear your favorite pair of blue jeans in support of rare and genetic disease awareness.
• If you're so inclined, make a donation to the National Niemann-Pick Disease Foundation in memory of our little angel Jacob. Donate here: National Niemann-Pick Disease Foundation

"Be the change you wish to see in the world." - Ghandi

All You Need Is Love

Exactly three years ago today on Valentine's Day, we shared the most wonderful surprise with our families...we were going to have a baby!!! About 7 months later, we welcomed our sweet baby boy Jacob into the world. Jacob opened up our hearts to a love that knew no limits and filled our lives with an insurmountable amount of joy. He taught us what it feels like to love unconditionally.

"I'll love you forever,

I'll like you for always,

As long as I'm living,

my baby you'll be."

                                           - Robet Munsch

We went to visit Jake today and found a wonderful Snoopy mailbox filled with love notes -- so much love for our little man! It always makes our hearts happy to know that others are thinking of our Jakey. But what's even better...is to get signs from our little angel letting us know he's thinking of us. Our special Valentine's Day treat came in the form of a song, as 'Amazing Grace' chimed over the cemetery, echoeing between the rolling green hills on this beautiful sunny day. We visit Jake all the time and this is this very first time we've heard music play through the cemetary. Our little angel never ceases to amaze me. It was a beautiful moment in time spent with the three loves of my life; Josh, Jake and Kelly.

Filled with little love notes - so sweet!

Wishing all of our family and friends a wonderful Valentine's Day filled with happy moments spent with those you love most!

Love you Forever Jakey Boy!