From the Mountains to the Ocean

From the tops of the mountains, across the miles, and to the tips of the ocean -- Jacob is so very loved! This week we were sent beautiful messages from family members who thought of Jakey during their wonderful adventures. It fills our hearts to know that Jacob has touched the lives of others so deeply and proves that his love always surrounds us.

Jacob's name was carved into a moss covered rock overlooking Vernal Falls in Yosemite National Park ~ a most beautiful place.

Jakey's name was also written in the sand on the beach near San Francisco. His PERSEVERE wrist band looks like a halo.

A candle was lit for Jake at Wells Cathedral in England. Jake's Auntie Kate picked up this flyer, which had a beautiful saying. It's a bit hard to read, so I wrote the words below...

Lord, make me an instrument of your peace. 

Where there is hatred, let me show love. 

Where there is injury, pardon.

Where there is discord, vision.

Where there is doubt, faith.

Where there is despair, hope.

Where there is darkness, light.

Where there is sadness, joy. 

Perfectly written and so perfectly Jake! All the gifts he brought to us: love, faith, hope, light, joy!

Angel Buddy

It is with a most heavy heart that I share our sweet little friend Riley earned his angel wings earlier today. Riley was just two-and-a-half years young. We are so saddened by the loss of yet another precious little boy and to be honest, I have been at a complete loss trying to find the words to write this blog.


A smiley pic of handsome Riley sent to me by his momma a few weeks before his 2nd birthday.

Riley and Jacob were born just a few days apart and although the disease progressed somewhat differently in each of them, there were often times where they seemed to experience the same regressions simultaneously. Riley's mom Lori and I have been in touch for close to a year...checking in on the boys, exchanging care advice/tips, sharing birthday party plans and smiley pictures, as well as offering eachother words of encouragement during difficult times. I often look at Lori's pictures of Riley and am reminded of our Jakey boy -- such amazing little boys. Lori is amazing herself, and has done an exemplary job caring for Riley despite the circumstances. I wish I could wrap my arms around Lori and give her the biggest hug right now.

It is absolutely heartbreaking each time we lose another child to Niemann-Pick Disease. It's simply not fair and it doesn't make sense for a child to suffer like this! The thing that really doesn't make sense, is the fact that any family would have to experience this type of loss TWICE!! Lori and Chris Robbins lost their little girl Faith to Niemann-Pick several years ago, before Riley was born. As a parent who has experienced the devastating loss of my own son, I can't even fathom what it must be like to lose two precious children. It hurts my heart to the core knowing what the Robbins Family must be going through.

Thank you so much to everyone who has kept Riley and his family in your prayers. It truly means a lot to us! Please continue to keep the Robbins Family -- Lori, Chris and little Chris (Riley's older brother) -- in your thoughts and prayers. I know they will greatly appreciate the support.

Keeping Riley in my own thoughts and prayers in hopes that he is being embraced by his big sister, Jacob and his other NPD angel buddies up in Heaven. Praying also for treatments and a cure that will soon bring families HOPE!
Faith and Riley Blog

Back To Work I Go...

Tomorrow is my first day back to work after being off on maternity leave for five months. I have serious mixed emotions about it. Five months seems like a lifetime ago, in fact, it was a lifetime ago...Jacob's.

Five months ago, I had absolutely no idea what my life would be like caring for a child with a life-limiting illness and a new baby. I constantly wondered how I was going to manage caring for both children, while Josh went back to work full-time. On my last day of work, my heart and mind were filled with so many emotions. GRATEFUL that I chose an education and career in health care because I truly feel that it helped me to better navigate the "system" and care for Jake. I was NERVOUS and yet, filled with EXCITEMENT anticipating the arrival of our baby girl [Kelly]. I felt JOY in knowing I would get to spend my days with my favorite little man, and yet I felt immense FEAR of the unknown. I left work on the 9th of November not knowing whether I'd even be able to return to work. My priorities were and always will be my children. At the time, I wasn't sure how/if working would be feasible and I worried how we would keep our insurance coverage. How would we pay our bills? The only thing I knew is that I was exactly where I needed to be...HOME!

At that point, Jacob's health had been steadily declining and we were really struggling with managing his seizures. Knowing that Jake's care needs were increasingly demanding, we began the lengthy process of obtaining coverage for respite care for Jake. This would allow us to have a licensed health care professional to help me with taking care of Jake for several hours each week -- it was not what I wanted. I am not one to ask for help and more importantly, Josh and I wanted to be the only ones caring for Jake. I did not want some stranger caring for my son because I knew they couldn't care for him as well as we did. Realistically, I knew I needed the help in order for Jake to receive full-attention and the best overall care possible.

On my last day of work (a Friday), I had absolutely no clue that Jake would only be with us less than a week. The Thursday before my last day, I had put Jacob on a portable oxygen machine for the 1st time (outside of being hospitalized) because of his labored breathing and he remained on oxygen for just one week before taking his very last breath. Ever since Jacob's diagnosis, I had hoped, prayed and wished with every single bit of my being for a miracle that would take away his illness...a cure...any sort of treatment that would at least give us the gift of time. However, I truly feel with all of my heart that we experienced a miracle. Jacob was our miracle boy who persevered through so much. He had one week of supportive equipment and pain medication at our home where he was most comfortable. The fact that we did not have to see him suffer through some of the awful stages of his disease for a long period of time was a miracle. Life is about quality, not quantity. As much as I wish with every fiber of my body that Jacob was still here, I am beyond grateful that we did not have to witness him suffering any longer. The pain of watching your child suffer is an indescribable feeling.

My last day of work I took Jakey with his portable oxygen tank to his grandparent's house to visit his new cousin Alexis

Fast forward five months and my life is entirely different now. I have an amazingly sweet and smiley baby girl Kelly who fills my days with so much joy, but life as I knew it is forever changed because Jakey is no longer here. My daily routine that involved a full-time work schedule, yet revolved around caring for Jacob and loving him -- feeding pumps, medication administration, scheduling doctor appointments, infant development therapy, ordering medical supplies, giving my little man a comforting bath in his special bath chair, snuggling and holding his little hands for hours each night before he drifted off to sleep -- is no more. Things are just so very different.

I am fortunate that I have had the past several months to focus on my family and myself; to navigate my way back into a very different life and to refocus my energy on that what brings me joy. Being a stay-at-home momma has been my greatest joy and truly makes me happy. Thankfully my employer is allowing me to return to work on a part-time basis temporarily so that I can ease back into things and have more time with Kelly. Time stops for no one and time has pushed me forward into this new chapter. It's going to be a big adjustment. One foot in front of the other and one day at a time. Wish me luck!!

On a side-note...please send some special healing thoughts and prayers to our little buddy Riley (NPA) who is currently in the hospital with severe pneumonia, which is collapsing his lung. Riley is a fighter, but he and his family could use a little extra love!!

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