~ Angelversary ~

One year -- 365 days -- 8,765 hours -- 525,948 minutes -- 31,556,926 seconds.

Any way you break it down; even one second, is one second too long to be without you. November 15th will always be a day of remembrance for our family, as we remember the last time we held you in our arms and witnessed the last breath you took. It was the end point of your suffering and our beautiful life with you here on earth.

I can't imagine that there is a pain greater than losing your child. We miss you every. single. second. How is it that our hearts can feel so broken, yet so filled by the love that we have for you? You taught us to love so fully and for that we are grateful, but it doesn't take away from the fact that our lives will never be complete without you in it. Every family picture is incomplete without you in it. Every family event and holiday just doesn't feel right without you here. Our lives are forever changed.

We've experienced a year where joy and pain collide - a year of heartache, grief counseling, soul searching, and spiritual awakening, met with the pure happiness that we have experienced with your baby sister, Kelly. We are constantly reminded of how special you are and how blessed we are to have had you in our lives for the short time we did.

Your room still sits with all of your things, including your favorite stuffed animals and your SpongeBob bed sheets. Sometimes I let Kelly play around in your room. Kelly loves to touch your toys, but she especially likes looking at pictures of you. One of her favorite items is a picture book filled with pictures of you. She will sit and look at the pages, while chattering away with her baby babble and the occasional "Dada," when she sees pictures with your daddy in them. Kelly's entire face lights up when we talk about you and show her your pictures. I feel there is a connection that you and Kelly share, which is sometimes beyond my comprehension. It is often my reminder that your spirit lives on in all of us.

"When God gives you a child you teach,

when he gives you an angel, you learn."

 

I adore this picture of your daddy staring so lovingly at you

The last smile I was ever able to catch on camera

Missing you so much Jakey boy. xoxo

REBELS With A Cause

This past Saturday was an incredibly special day for our family. One of our local youth football teams, the REBELS, dedicated the entire day of games in honor of Jacob and raising awareness for Niemann-Pick Disease. Every single player wore light blue socks, each cheerleader wore a big blue bow, and all the coaches sported specially-made Rebels t-shirts in light blue too. Our family sat in the stands cheering them all on as three of the four teams won their games! Whoop!! Whoop!!

PERSEVERE

Josh played for the Rebels back in the day and we have many families members and friends who were on the field Saturday either playing, cheering, or coaching. It was nothing short of AMAZING to watch Jake's older cousins playing their little hearts out for him. I cannot even describe how incredibly touched we were to sit in the stands and watch as all of these kiddos showed their support for our little man. There were goosebumps and tears at each of the half-time announcements, where the announcer read a short tribute about Jacob and why the teams were wearing blue -- a reminder to live each day in the moment and fill each day with JOY!   

Let the games commence...

Sideline warm-ups and sporting those blue socks

 

Cheer Bows!!! I think I need to make one for Kelly.

 

Josh had special shirts made just for us with a heart-shaped picture of Jake

Kelly (rocking a blue headband) with her Uncle Glenn

Raising awareness and money for research!

Jake's Uncle ("Coach") Casey and cousins Chase and Casey Jr.

Cousins cheering in the stands!

Just a few of Jakey's biggest fans!!

 

But wait...the day got even better when we found out that several hundred dollars had been raised through raffle ticket and PERSEVERE wrist band purchases. All money is being donated to the National Niemann-Pick Disease Foundation in Jacob's memory to support research for NPD type A treatments.

Casey Jr., Abigail and Christian -- Josh and I are so very proud of you! The love and support you have for your cousin is truly something special. We see it every time you wear one of Jakey's wristbands and hear it with every mention of his name. You put on brave faces and played/cheered your hearts out. We may be biased, but we have some pretty awesome kiddos in our family!

From the bottom of our hearts, THANK YOU so much to the entire Rebels organization for your incredible kindness and support in honoring our son. A special thank you to Casey and Michelle Strand for all your efforts to create such a memorable day!

And that's another WIN!!!

Alone we are rare, but together we are strong!

A 'Butterfly Girl' Gets Her Wings

I have held off writing this post because quite frankly, my heart has taken quite a beating the last several weeks and it has been difficult to get the words out.

Our NPA 'family' lost two precious girls; the remaining two children who were diagnosed with having Niemann-Pick type A during Jacob's lifetime. Our families have bonded along a parallel journey that I would never wish upon any parent. To my knowledge, there is currently only one little girl in the United States living with NPA, but we only found out of her diagnosis fairly recently. As you can imagine, this news has been incredibly difficult to accept. We have grown to love each of these sweet kiddos and it's heartbreaking to know firsthand the tremendous grief that these families are feeling.

One of the families chose to fight the NPD battle privately, so out of respect, I would like to acknowledge her passing.

The second child, is sweet little miss Amber. Her mother Laura said that Amber "was surrounded by love and was comfortable" at the time of her passing. Our deepest and most heartfelt condolences have already been sent to Dylan, Laura, and Amber's older brothers, Luke and Jai.

Shortly after Amber's diagnosis, her aunt had contacted me via Jake's blog and weeks later I connected with Amber's parents Laura and Dylan. If you've been following Jake's blog, you may recall that we actually met Amber and her family back in August 2012, as they were traveling through San Francisco on their way back home to New Zealand from the NNPDF conference. Jacob's disease had progressed substantially at that point and he was unable to travel to the conference. As you know, NPD is a very rare disease. It's even rarer for two children with NPD type A to ever meet in person. It was a once in a lifetime experience for Jacob and Amber to have met -- incredibly special!

Read Blog post: Newfound Friends

Amber Jelsma, fondly referred to by her parents as their "butterfly girl" June 27, 2011 - October 10, 2013

Amber touched my life and my heart in such a wonderful way. I am forever grateful to have had the opportunity to snuggle such a lovely and special girl; an angel. There is just something so incredibly unique about each of these kiddos, which can be seen in their eyes. As cliché as it sounds, the eyes of these children truly are windows to the soul. I experienced this with Jacob and I see it in the pictures of these little angels. A gentle sweetness; truth; joy; never-ending love; emotions that could never be expressed through words.

I know these sweet girls are being warmly embraced by all their little angel buddies.

A Birthday Fit For An Angel

Sweet Jakey Boy, we miss you so very much! Three years ago today we were dressing you up in your 'coming home' outfit, which was covered in cute little monkeys and strapping you into your car seat for your first ever car ride home. As brand new parents we were so nervous, but yet, we were so excited to bring you home and show you all of your cuddly baby things. Your Daddy and I were still in disbelief that the perfect little boy [you] that we held in our arms was ours to keep.

It still doesn't seem fair that we only had such a short time with you -- not even 26 months. We miss you every single day and will never get over the fact that we don't get to watch you grow up. Our lives will never be the same without you, but we know without a shadow of a doubt that our lives are far better for having had you in it. The day you were born was the best day of our lives and we have relived those happy moments all week. We never imagined that a tiny little boy could bring such love and joy into our hearts.

This has been a very difficult week for your Daddy and I, but I don't really have to tell you this because we have felt your love surrounding us all week. We anticipated that this week would be very emotional for us, but we didn't want to focus on the sad reality of not being able to celebrate your birthday with you. Instead, we decided to celebrate you by seeking out kind and loving gestures for others and by living in the moment; just doing something that brings us and those you love, JOY. All of our family, friends and blog followers joined in on the fun!!

We spent all the time and money that we would have otherwise spent planning a super fun, three-year-old themed birthday party and used it to spread JOY to others! It turns out that it was the absolute most perfect way to celebrate you and we know that you enJOYed every minute of it!

We received little notes and pictures all week long via texts, e-mails, Facebook messages, and Instagram pics. There were so, so many random acts of kindness and 'pay it forwards' in your honor -- meals purchased; clothes donated; park clean-ups; bridge tolls paid; special surprises for elderly people; blood donations; a birthday party thrown in your honor at a local pre-school; goodies baked for NICU nurses; shoes donated to recycle into playgrounds for kiddos; supplies donated to animal shelters...this list goes on and on.

Your Daddy and I completed quite a list of joy-filled acts in your honor. I'll have to admit, I found myself looking for even more things to do because it brought us so much joy to share about your life, while doing kind things for others. I just have to share a few of my favorites...

A night out to a random mom, which was left on her car while she picked her child up from school

Live lady bug release for you on your birthday

A donation to Children's Hospital Oakland, which came with this sweet picture that a child drew of a ladybug. I think this was a true sign that you were enJOYing all the love being given in your honor.

Special thanks to whoever left this thoughtful birthday package on our front doorstep, which amongst other goodies included a birthday hat for you and a donation of books to the local library. It was a great surprise!

This e-mail made my entire week! I had bought several strangers some coffee one morning and added a wrist band to each coffee. One of the recipients went to your blog and took the time to write the most touching e-mail. It validated that even the littlest gesture of kindness can bring such joy. You continue to amaze me little man...just look at the impact you continue to have.

On your actual birthday Daddy, Kelly and I went to Toys R' Us and filled a cart with toys and books to be donated to Children's Hospital. We picked toys we think you would have liked and ones we know will help bring joy to other special kiddos like you

No birthday would be complete without decorations, cake and a little ice cream, so we made sure to pick all the best for you! 

Daddy had a custom arrangement made to wrap around your headstone. We even went down to the florist with a detailed plan and picked every flower specially for you.

We tied blue ribbons to the trees, which blew perfectly with the breeze

Kelly loved your birthday balloons so much and was waving to them as we set everything up perfectly for your special day. I think her favorite part was singing 'happy birthday' to you...



We decorated your bench with balloons and birthday goodies for all passerby's to see. We even left wrist bands to share with others the joy that you brought into our lives. Grandpa Dennis planted some flowers around your tree too.

 



A birthday lunch and a little crème brulee {your favorite} to kick off your day. I think your sister likes it almost as much as you did!

 

Our immediate family came over to our house on the night of your birthday. We wanted to be with those who loved you most and share the gift of time. Our hearts are all still so broken and I think being together helps to take away some of the pain. It helped Daddy and I immensely just to have everyone by our sides.

No party is complete without a theme, so we went with SpongeBob since you used to love watching the cartoon with your Daddy. I was never a big fan, but you loved it! Who lives in a pineapple under the sea anyway?

Well, my angel...we really hope you had a very special heavenly birthday. Your Daddy and I would give anything to hold you in our arms again. We miss snuggling you and looking into your big brown eyes, which truly were windows to your gentle soul. You could tell us with a simple glance what you were thinking and how you were feeling. You didn't need words or sounds to deliver your messages...you still don't. We're so proud to be your Momma and Daddy. Love you forever and sweet dreams little man.

A Birthday Wish...

We're just a few days away from what should be Jacob's 3rd birthday, but instead we will be celebrating his 1st heavenly birthday. Heaven or Earth, September 20th is a day to celebrate Jake!

I have thought about Jake's 3rd birthday for well-over a year, which seems odd because while planning his 2nd birthday, I had to push out the unthinkable thoughts in my mind that questioned whether or not he would be here to celebrate another year. Even though we are incredibly heartbroken that we can't have our Jakey boy here with us, we hope that Jacob's life serves as an inspiration and not as a tragedy. We are truly blessed to have had Jacob in our lives and we will continue to celebrate him.

Over the past several months I have happened across various different websites dedicated to celebrating children and random acts of kindness (RAK) days, events and ideas. Did you know they actually have a national RAK day in New Zealand, which happens to be in September!?! Now, I know it's not a coincidence that I 'happened' across these sites...I think I had a little guidance from a little angel who knew just how he wanted us to celebrate his birthday.

Jacob taught us to live in the moment and to find the joy in our lives. He showed us all such strength, love and perseverance. Through our journey with Jacob, we experienced such kindness, generosity and support from others -- we aspire to pay that forward.

OUR BIRTHDAY WISH for Jacob...is for all of our family, friends and blog readers to find a positive way to remember Jacob, by seeking out a kind or loving gesture for another person and/or live in the moment; do something that brings you and those you love, JOY.

Here's a few ideas to get your wheels spinning...

• Leave work a little early and have a fun family night with your kiddos
• Call or visit someone who is sick (meals are a plus)
• Read to your child...let them pick the book and throw in an extra one for good measure. Jacob absolutely loved snuggling up and reading books with us.
• Take a long walk, hike or bike ride somewhere beautiful and just enjoy the scenery
• Donate food or clothing to a local shelter
• Be spontaneous and do something you've always wanted to do

A day is not long enough, so I think we should all take this week to spread out the little joys.

There are so many possibilities! The coming days are going to be rough for us and it would mean so much to our family, to know that Jacob's life continues to touch others in a positive way; that he continues to bring joy and love into the hearts of many!! Let's celebrate the life of an incredible boy -- spread the JOY and share a little extra kindness in memory of Jacob!!!

We would love to see/hear about how you celebrated with us, so feel free to text, e-mail or send pics via Facebook and Instagram -- don't forget to hashtag #joyofjacob.

{Love}

Josh and I just celebrated our 4th wedding anniversary (12 years together)! We met when I was 19 years old and Josh was 22...awwwwe, young love. I was just a few months away from moving off to college and definitely wasn't looking for a serious relationship. In fact, I even gave him the wrong phone number when he first asked for it. He still teases me about that! Regardless, I think sometimes love finds a way of sneaking up on us.

Obviously, I have pics way older than this, but none digitally. 1st digital pic dating back to NYE 2006 - James Bond themed cruise around the SF Bay.

About a month after meeting Josh, he was very seriously injured and after undergoing surgery, he had a long road of recovery ahead of him. I barely knew Josh at the time, yet somehow I knew that I needed to be by his side. When I finally left for college we decided to have a long distance relationship, which was extended by a few extra years when I took my first 'career' job. We spent countless hours on late night phone calls (after Josh got off work) talking about our days and traveled thousands of miles over the years to spend our weekends together as often as possible. Fast forward 7 years (yep, it took a while) and Josh finally popped the question. I said "yes", of course! We bought our first home and one year later we got married.

One of my favorite action shots from our wedding, when we busted a move during our surprise 1st dance.

{Love} it always protects, always trusts, always hopes, always perseveres. Love never fails.

Corinthians 13:7-8

I find it somewhat ironic; partially insightful; overwhelming at times; and every bit grateful in knowing that we are truly living out the vows we shared on August 29th, 2009.

We may disagree on some things and he may be the reason that I have mastered "the look" (you ladies know what I'm talking about), but at the end of the day, there is no other person on earth who I'd rather spend my life with. Josh has supported me through a multitude of life challenges and decisions; just as I have supported him through his. I know every trigger word that leads into his many jokes, but yet, he still always knows how to make me laugh.

Josh has a wonderfully positive outlook on life and a contagious laugh, which is probably one of the things that I love most about him. He helps balance out my type-A, overly-planned and perfectionist personality. Josh is a hardworking man and an absolutely wonderful daddy or 'dada', as Kelly babbles at him. On the days where I had to spend hours managing doctor appointments, ordering tube feeding supplies, and battling out insurance bills, I could rest assured knowing that Josh was cuddling up with Jake watching SpongeBob and showing him the utmost love every minute of the day when I couldn't do it myself. Never in my worst nightmares could I have imagined losing a child to a terminal illness, but it happened...we live this reality daily and comfort each other the best that we can. Even despite the most challenging and tear-filled times, I know I can count on Josh to be right there when I need him most. We have worked hard to maintain our relationship, even when it felt like the world was falling apart around us.

I read recently that "the couples that are MEANT TO BE are the ones who go through everything that's designed to tear them apart and come out even STRONGER." Pretty fitting I think...

Looking forward to the future joys that life will bring us!

First snuggles with our little bundle of boy, Jakey.

Loving our little miss Kelly Joy

Thanks for letting me share the mushy stuff.

A WonderFULL Life

It's with a heavy heart and tears flowing that I share about our sweet little friend Quinn "Quinny" Linzer, who earned her angel wings this past Friday, August 9th. I was traveling out of state to attend a funeral for my Uncle Arnie, when I received the sad news. A few days earlier I had found out that Quinn's disease (Niemann-Pick type A) had progressed very quickly to the end stages; similar to how Jacob's disease progressed, but it still came as such a shock. Quinn and the entire Linzer family had been weighing on my mind for several days -- foreseeing a future that no parent ever wants to experience and re-experiencing the grief of losing our own child just 8 months ago.

Quinn was just over a year old, and although her beautiful life may have been short, it was filled with wonderFULL amounts of love and amazing experiences. I've been truly inspired by the way Quinn's parents approached a most devastating situation and created a very special bucket list for their little cutie to ensure that she lived the most "wonderFULL" life possible.  The Linzer family showed so many of us what it truly means to PERSEVERE.

I don't believe I have ever shared this, but shortly after Kelly was born, the Linzer family sent us a beautiful Willow Tree carving of a young brother and sister. It was the utmost thoughtful gesture at that point in time and one we appreciated so very much! The carving sits in Kelly's room as a visual reminder that Jakey will always be her big brother looking out for her. I know Quinn will always be the sweetest angel looking over her parents and brothers, just as they did so lovingly for her.

All our love and prayers to you Linzer family -- Eileen, Brett, Colin and Reid!! Thank you Quinn for showing us all what it means to love and live fully.

Quinn's blog:
http://www.teamlinzer.com/

I am certain that any supportive words and prayers would be most appreciated.