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!!