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.

Wednesday, March 27, 2013

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!

Wednesday, March 20, 2013

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.

Saturday, March 16, 2013

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"

Friday, March 1, 2013

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.


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


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