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.

Sunday, September 20, 2015

NEVERLAND

I've been thinking about writing this post for quite some time, but somehow the words just haven't made their way to the blog. I think it's fitting to share today, on what is (or should be) Jacob's 5th birthday. I remember several months before Jacob's 2nd birthday, I began thinking of how important it would be to celebrate his birthday. The thoughts circled in my head nearly every day wondering whether or not this would be his last birthday and how I wanted it to be a perfect celebration for him. At the time, Jake & The Never Land Pirates, which is based around the story of Peter Pan, was very popular. I thought it would be such a fun theme considering we were celebrating our very own "Jake". After much consideration, I realized I couldn't throw a party centered around a boy who never grew up because in my heart, I knew that was the devastating reality our family would face -- a boy who wouldn't grow up.

Now, I have to share that our daughter Kelly has been in the "Peter Pan/pirate stage," for a few months now. We read her some version of a Peter Pan book nearly every night, watch the movie often, listen to "You Can Fly" on the iPod, and witness her imagination run wild daily with playtime often centered around Peter Pan characters. Needless to say, she is obsessed!

Dress-up is a daily thing around the Brooks household. Poor Kamy was woken up by a pirate invasion this particular day.

Pirates aren't always scary. They're actually pretty cute!
In fact, just the other day Kelly snuggled up to me and point blank told me, "I never want to grow up." In that moment, I felt such an immense amount of joy and pain at the same time. Tears welled up in my eyes as I hugged her tightly. I feel so overjoyed to know that I can dream about futures with my girls and so blessed to be able to enjoy being as present as possible in their lives. Then pain...I had been hit with the overwhelming feeling of loss yet again, as my heart remembered the huge piece of my life that is forever missing, my Jakey boy.

The irony in this particular situation is that while Kelly fantasizes about this magical Neverland, with pirates, pixies, flying, and Lost Boys, I will always struggle with the fact that we really LOST our boy. He never got a chance to grow up. We [as parents] are supposed to let our children grow, not go. This is the Neverland we live in -- we continue to live our lives and our girls continue to grow in such wonderful ways, but Jacob never got a chance to grow up. He remains forever young as a two-year-old. There are so many things that we never got to experience with him. A very long list of NEVERs.

In the past month or so, I have been overcome with emotions at times, as we've experienced the joys of living out some exciting new milestones and adventures with our girls. Things we never got to experience with Jacob: pre-school, another birthday, a Disneyland trip and the day-to-day growing relationship between siblings. I count my blessings every day that I get to enjoy this life with my girls, but I will forever miss my son and all the NEVERs we didn't get to experience with him. I expect I will go through life always missing the moments we had together, as well as those we didn't, but the days surrounding his birthday are always the most difficult.

We just celebrated little sister Kamryn's 1st birthday a few weeks ago. It feels like time has passed so quickly and it was bittersweet celebrating such a special birthday for her. Of course, the theme of her party was ladybugs. 
Kelly started preschool a few weeks ago and is loving it!! She's such a sweet and sassy, smartypants. Jacob would have been starting TK this year and I had to fight back tears a few times as all my friends shared pics of their kiddos starting back to school. I didn't expect the start of a new school year to stir up emotions the way it did.

Our first family trip to Disneyland. It was so unbelievably magical watching the pure joy and excitement in the eyes of my daughters. So many, many happy memories made (even despite record breaking 100 degree temps). Disneyland is one of the places we really wanted to experience with Jacob, but he became too medically fragile to travel before we could go. I now fully understand why it's a top destination for Make-A-Wish children and I wholeheartedly support wish granting organizations like the Quinn Madeleine Foundation who make memorable trips happen for children with terminal illnesses. I mention this because the Quinn Madeleine Foundation was established by the parents of another angel, Quinn Linzer, who also had Niemann-Pick Disease. 

Always by our side, Jakey made his presence known as we walked through the front gates of Disneyland. A little ladybug hitched a ride in my hair. Can you see it? Jake never ceases to amaze me with his wonderful signs when we're missing him most.
A quick visit to Pixie Hollow and we found our way to Tinkerbell, which happens to be one of Kelly's favorite fairies. I swear there is no filter or photoshop on this picture, it just turned out so neat with the iridescent light thing going on. We believe in fairies! 
"Second star to the right and straight on 'til morning.'" As we were walking to breakfast, Peter Pan (Kelly's absolute favorite Disney character) took her hand an ran off with her before spending a few incredibly special minutes talking to her. She ran up to us afterwards shouting "Peter Pan is real!" I had tears in my eyes for so many reasons, but most of all because it was quite possibly one of the most magical moments I've ever witnessed.
Happy Birthday Jakey! Sending so much love and heavenly birthday wishes to you, my sweet boy. We continue to honor you and find ways to celebrate with you always. Love you forever!



"So come with me, where dreams are born, and time is never planned. Just think of happy things, and your heart will fly on wings, forever, in Never Never Land!” 
-- J. M. Barrie, Peter Pan: Fairy Tales



Saturday, November 15, 2014

TWO

Two years -- far too long to be without you. Another angel-versary. Soon you will have been gone from our arms, longer than we held you in them.

It's still difficult to accept the fact that your Dad and I will never get to watch you grow up. The most wondrous chapter in our lives was cut far too short. There are nights when I look into my arms to see your sister, Kamryn snuggled against me and I can recall so vividly when it was your sweet little face nuzzled into my chest. Holding you, I had everything I ever needed in life. I sometimes have to remind myself of how fortunate I am. Fortunate, because most people only dream of angels, but I got to hold one in my arms. I am blessed to be your momma - always have been, always will be.

Some days it feels like a broken dream, where you're not quite sure if it all really happened...then reality sets in. So much has happened in the past two years. It's often surreal to think about how much has changed. My life feels completely different without you here. It is different. So. Very. Different.

Priorities have changed, perspectives have shifted and I have two beautiful daughters (my "little man" has two little sisters). Your Dad and I have been able to experience so many of the 'firsts' that we were robbed of with you (e.g. words, steps) and tried our best to celebrate many firsts without you (holidays have been the most difficult). Little by little I have begun to let go of the fear and worry that your sister's firsts will be their lasts. In fact, I resigned from my job so that I could be at home to enJOY all of the momentous firsts that are still to come. Time and presence are two things that I value so much more because of you my sweet boy.

Our life with you just seems like it was so long ago, yet you're still a part of our everyday lives; in our thoughts and with JOY in our hearts always.We know your love surrounds us and that you watch over us too. Two years was far too short of a time to have with you, but it was too wonderful to ever forget. You will forever be our two-year-old little boy whom we love beyond measure.

One of your first real smiles : )

I miss your snugly little self and how much you loved your 'Ele'(phant).
That face...so adorable.
Missing these moments.
Love you forever Jakey!

Thursday, September 4, 2014

Another Little Lady to Love

It's been a little over a week since we welcomed a new little lady into our lives ~ Kamryn Ellie Brooks. Kamryn (a.k.a. "Kamy") was born on Saturday, August 23rd at 6:46 a.m., weighing 8 pounds and 12 ounces, measuring 21 1/4 inches. Kamryn is just the sweetest little one and loves to be snuggled. We think she resembles Jake more so than Kelly, but she has her own unique qualities. Big sister Kelly is completely in LOVE and gets so excited every time she sees her little sis. It's quite adorable, or as Kelly would say "awe, so cute!" Aside from being especially cute, our little sweetie has quite the birth story.

Kamryn Ellie Brooks
Our lovely little lady.  I wanted to dress her in something special to remind me of her brother Jacob. Isn't this ladybug outfit the cutest?
Big sis Kelly's checking out her new baby sister. She says "Kamryn" perfectly. We've already experienced so many heart melting moments with our two little girls and are looking forward to many, many more!
Newest family photo. Kelly even has her "Big Sister" shirt on. If Jake were here, I imagine he would be sitting right in between us all.
Now for the birth story...

My brother Joe and my sis-in-law Jenee were expecting their 2nd child just a mere 5 days before I was due. Mind you, our girls (Kelly and Lexi) were born exactly one month apart. I swear, this was not planned! As it turns out, Jenee and I both ended up in labor at different hospitals on the same afternoon! Crazy right!?! My parents were in a frenzy with all the labor updates. We thought our little ones might actually end up sharing the same birthday. Well, my scheduled induction (thanks to big babies) progressed a little slower and our little ones arrived just nine hours apart -- different days -- different astrological signs too! My nephew is a Leo (born 8/22) and Kamryn is a Virgo like her big brother Jakey.

Meet my adorable nephew ~ Camden Gage Kelly.

Camden with his stuffed Donald Duck, which we re-gifted to him. My brother Joe and his wife Jenee (Jakey's godparents) gave Jake this stuffed Donald Duck when he was a baby. We wanted Camden to have a little something special from his big cousin.
Forever friends ~ Kamryn and Camden. Yes, we're well aware that the names are very similar and we love that! I think it's very fitting in how close they are and will continue to be as they grow up together.

Josh and I put a lot of thought into the name we chose for our new little girl, as we wanted to pick a name that also somehow incorporated her brother. Our initial list of names was VERY long, but we eventually whittled it down to the top two first names and a few middle name choices. We waited until we could meet her to finally decide and make sure it fit.

Kamryn means spiritual one. We chose to spell it with a "K", so we could be 'those parents' who have matchy-matchy names for their kiddos. Ellie, is actually the name of Jake's favorite stuffed elephant (only the more girlie spelling) and means light, bright shining one. It is more than perfect because it reminds us of Jake's song, 'Here Comes the Sun' and the fact that she is our second rainbow baby. She is our "something beautiful and full of light...a counterbalance of color, energy and hope."


Most people don't know that when Kamryn was born, she wasn't breathing on her own. I was able to hold her for approximately two seconds before a medical team whisked her off my chest. It was then that I realized she hadn't let out her first cry. During those first minutes all I could think about was our little girl and Jacob -- how could this be happening?? It was so surreal. In the back of my mind I was thinking that I absolutely couldn't fathom losing another child, while at the same time knowing that Jake was watching over us and that he would never let that happen. I could feel Jake's presence and kept thinking back to a very special sign that I received at the cemetery earlier in the day when I asked him to watch over us. I knew with every fiber of my being that our baby girl would be okay, but I needed her to cry for confirmation.

Thankfully the amazing medical staff went right to work on her and were able to resuscitate Kamryn by helping to inflate her lungs. It took a couple minutes for her to let out her first cry, which left us with an incredibly helpless feeling until we heard the cry that reassured us she was okay. Apparently my placenta had abrupted during the last few minutes of labor, so her oxygen supply was limited. The lack of oxygen was causing her heart rate to drop, so she was in distress, very weak, and needed the extra help. The abruption also put me at great risk. We were both closely monitored during the hospital stay, but doing well-enough that we were able to check out of the hospital and head home the next day.

As if this weren't enough activity to welcome a little one into the world, we also had a 6.0 earthquake hit in the middle of the night while we were in the hospital. Being in a large non-earthquake retrofitted building with a wall-to-wall window when a big quake hits is certainly not the safest place to be. Hence, the haste to check out of the hospital. I think it's safe to say that Kamryn is shakin' things up quite a bit since she arrived. Not even a day old and she made it through her first big quake (the biggest to hit the Bay Area since 1989).

Whether you are a spiritual person or not, I can tell you without a shadow-of-a-doubt, that we have a special angel looking over us. We will continue to share Jacob with his little sisters, so they will always know how lucky they are to have such an incredible big brother watching over them.

First night at home reading Kamryn her brother's favorite book, just like we did with her big sister.
Visiting big brother

Photo Cred: Professional photos taken by my cousin's wife Amber, who just launched her photography business Sweet Crazy Life Photography. Check out her Facebook page.



Sunday, August 10, 2014

NNPDF Conference 2014

Last week Josh, Kelly and I attended the 22nd annual National Niemann-Pick Disease Foundation (NNPDF) family conference. We have wanted to attend since Jake was diagnosed with Niemann-Pick Disease in 2011; unfortunately, timing, declining health, and travel to the East Coast just weren't in our favor. Thankfully, a mere three weeks from my due date, we were fortunate that the conference took place in the San Francisco Bay Area (a short hour drive from us), so that we could attend. The conference happened to fall amidst Josh's birthday and although we knew it wouldn't exactly be the most joyous of occasions, we felt a strong desire to be present and represent the type A kiddos. Jakey and all the other NPA affected children need us to continue to be the advocates for treatments and a cure, so that other children/families don't have to experience what we have gone through.

I honestly cannot say that I was excited to attend the conference, but I knew in my heart it was where we needed to be. That said, I was most certainly anticipating the opportunity to finally meet in-person many of the families that we've mostly only connected with via social media, especially the Laffoon family (Wylder's parents and little brother). The Laffoon family has created the Wylder Nation Foundation, which aims to "accelerate the discovery and treatment options for children with lysosomal storage disorders." We had been waiting to hear more about the amazing efforts they're putting forth in honor of their son. We also met the Hopkin family, whose son Garrett has NPA. It was actually the first I had heard about Garrett, so I think I speak for both Josh and I when I say that we were really taken back to meet another adorable boy affected by this disease. Kelly, being a one-year-old, was quite taken with Garrett's Mickey Mouse attire and enjoyed chasing him around.

Before the conference, we had only ever met one family/child affected by Niemann-Pick - Amber Jelsma and her parents. Given the rarity and severity of the disease, it's an extremely rare occurrence for two NPA children to meet in person. To our knowledge, there are currently only four children in the world (yes, world) living with NPA; two in the United States, one in Russia, and one in Portugal. 

Frankly, this type of conference isn't one that any parent or family member would have the desire to attend. It's not the typical parental connection that most people are familiar with, like PTA meetings, little league, or park play dates. Our connections are much deeper, rooted in the care of our children who have been devastatingly affected by a horrible disease that we all hate! These families have offered us a level of emotional support that few others have been able to, because they understand firsthand what we've gone through and will continue to live with for the rest of our lives. It's hard to describe, but it was a very fulfilling experience to connect with other families and be able to talk so openly about our experiences, as well as share memories of our children. For us, this was the most beneficial reason for attending.

The more scientific and medically-based focus of the conference was also helpful, as was the opportunity to speak with physician specialists. We also heard from representatives from the FDA and Genzyme, one of the world's leading biotech companies. There are clinical trials underway for enzyme replacement therapy to treat Acid Sphingomyelinase Deficiency (ASMD), which is what many of us more commonly refer to as Niemann-Pick type A and B. There is a disease spectrum that presents itself in variable forms, with rapid, progressive, neurologic decline in the most severe forms of the disease [the form Jake had] to less-severe/moderate forms of the disease that affect those during childhood with little-to-no neurologic decline. We met adults with the disease who are currently in the trial at Mount Sinai in NY, where we took Jake to be evaluated. At this time, the focus really seems to be on the treatment of non-neurologically impacted adult patients with pediatric trials to start in 2015. Initial feedback is very positive, but official trial results have not yet been published. There remains the issue of crossing the blood brain barrier, so those with neurologic decline are excluded from the trials at this time. While it's great to know that progress is being made in the right direction, it's simultaneously frustrating and disappointing to hear that there still is no option for children like Jake who are suffering more from the neurologic decline of the disease. There is most certainly a need for continued research and development for NPD. That said, we are even more encouraged by the efforts of Wylder Nation Foundation that are helping to drive focus and resources toward accelerating treatment options for ASMD.

Hopkin, Laffoon and Brooks Families.
Photo cred: Levi Gershkowitz ~ his Living in the Light of Rare and Orphan Diseases project is truly inspiring. He was kind enough to take a group shot of our families, as part of the photo documentation of the annual conference.
Candle lighting ceremony in memory of all those who have earned their angel wings over the past year. Incredibly emotional, but signifies the exact reason we all need to be together in support of each other and a cure for NPD.
Two very special NPA angels honored during the candle ceremony ~ Amber Jelsma and Quinn Linzer.

Kelly rockin' her superhero tutu and picture frame that she made in the childcare room. During the conference, family members volunteer to help watch children while parents attend the various conference events. We didn't plan to leave Kelly, but they had an amazing set-up and 1:1 care. She spent a couple hours playing each day and LOVED it! It allowed Josh and I to be together to connect with other parents and listen to disease related presentations.

Rainbow babies Kelly Joy and Koa (Wylder's little bro). Kelly spent quite a bit of time checking out "baby" Koa. He's quite a handsome little guy.

We went to dinner with the Hopkin and Laffoon families. Of course, Josh brought his magic along with him and Garrett was pretty impressed.

Here's Shannon showing off her magic skills for little miss Kelly.

An extra sweet birthday treat for Josh from a special angel named Wylder. Can you believe he didn't even share any with his preggo wife? It was obviously very delicious.

On the last night of the conference, there was a dinner and dancing celebration for all the families. We got a group shot of many of the children at the NNPDF conference, as well as the awesome childcare volunteers. There was a superhero theme, so many of the kiddos were dressed accordingly with superhero shirts, capes, and tutus.

Kelly dancing the night away with her new friend Kalia, who was super sweet and helped us round miss Kelly up quite a few times. Kalia has NPD type B and we met her parents during the conference.
Overall, we are so very glad we had the opportunity to attend the annual NNPDF Conference and plan to attend in future years. We feel we owe this to Jake and ourselves to remain active participants in the NPD community, so that we can help support other families and more importantly, support the continuation of research & development for NPD treatments and one-day a cure.

Monday, July 7, 2014

Memory Quilt Made With Love

I've been so excited to share something very, very special that I have been working on for many months with a LOT of help from my Grams. The "lot" is bolded and underlined because I truly could not have completed this project without her guidance and crafty hands. I will preface this blog by saying this 'project' --  more a labor of love, is something that I have wanted to do since Jakey earned his angel wings, but something that took me over a year to finally start because -- I just wasn't ready. After scouring Pinterest boards, purchasing books and Google searches galore, I realized that I wasn't prepared to part with the pieces of Jake that would soon be put to a better purpose. Shortly after the first of the year I decided that with a baby on the way, it was important to complete this project so that I could have something that was more tangible than a picture to hold onto when I was missing my baby so much and something meaningful to share with our kiddos. With that said, here it is...Jacob's Memory Quilt.

We LOVE it!! Every fabric chosen has a memory attached to it. Every cut and every stitch was filled with love.
I took pictures throughout the memory quilt making process because I thought it would be nice to share with other families who might be considering making a quilt of their own in memory of a loved one. Creating a quilt like this is a true labor of love and for me, it was filled with a tremendous amount of emotions. Part of the reason I waited so long to start the quilt was because Jakey's clothes still smelled like him - something I could not bare to part with. The irony is that the scent that lingered longest was actually from permanent stains in his clothes where his g-tube had leaked onto his PJ's and blankets during overnight feeds, which happened nearly every night when his body had started to slowly shut down. We adjusted feed amounts to deter that from happening, but it was just a part of his NPA progression. Crazy that a thing like that was something I felt the need to hold onto. 

Picking out shirts. I had gone through all of Jake's clothes well over a year ago and selected some of the outfits that held the most special memories or significance. Our "little man" loved music and strumming the guitar with his grandpas. He was also a big Niner fan (and Raider fan too - Josh made sure of that).
Some of the border fabric that I chose...music notes, because he loved music.
Gasp...1st cut into the shirts. It was VERY difficult for me to cut the shirts up. We cut the backs and arms off each shirt as a first step to prepare the fabric to be cut into squares.
My grandma Sharon (a.k.a. "Grams") teaching me how to measure and cut out the squares of fabric to be pieced together for the quilt. This part took a looooong time. With a one-year old racing around the house we also had to be careful to hide the rotary blade from slicing off little fingers, eh, who am I kidding...I had to make sure I didn't cut off my own fingers!

Jaker's favorite cartoon - SpongeBob Squarepants. Jake's Great-Grandma Jeanne brought these jammies for him on one of her trips to visit. I don't think she even knew how much he loved his SpongeBob. This also happens to be Kelly's newest obsession, so it's by far her favorite part of the quilt.

Since I couldn't iron and take a picture, I'll just tell you that all the shirt pieces were ironed onto a special paper to reduce the amount of stretch/flex in the fabric. We then laid them out on a giant piece of felt on the wall to give us an idea of how we wanted to design and piece it together...by "we", I mean my Grams. She did all the sewing. I'm just not very good on the sewing machine and this wasn't the type of project you re-learn how to sew on. Not much room for mistakes, so I let the master crafter take over. She's been making quilts for years, not to mention sewing, knitting, painting, crafting...you name it, she does it!
Here's the quilt blocks pieced together with all the fabrics and borders We still moved things around a bit after this because we weren't quite committed to the layout. The outside border was a fun checkered pattern, which I chose because Jake used to rock checkered Vans and he liked watching NASCAR with his Grandpa Dennis (hence the Jeff Gordon #24 shirt). We then sent it off  to the quilter - the woman who did the quilting (sewing together of the layers of fabric) used a really neat heart design throughout the entire quilt and hand quilted around certain parts, like the monkey to make the different pieces more pronounced.

Ta-da!!! Had to get a picture of me and my Grams holding this amazing labor of our love. Countless hours went into the making of this treasure, filled with so many special touches. A friend of my Grams even embroidered Jacob's name onto the top in blue, super sweet!

Little sis' Kelly Joy checking out the quilt and admiring her favorite "Bob-bob" (her pronunciation for SpongeBob)

Josh was so excited! He wouldn't let me show him anything throughout the entire process because he wanted to be surprised with the end product. He did help me decide on the fabric for the back. I had spent hours searching for a fabric for the back and narrowed it down to a top 3 list. He liked the elephants the best because it reminded us both of Jacob's favorite stuffed animal, his elephant "Ele."

A closer look at the soft flannel elephant fabric. I especially love how the elephants are snuggled up like we used to with Jake.

One of my favorite parts - a little ladybug love scattered around the edges. These spotted love bugs were my Grams idea because I couldn't find a masculine looking ladybug fabric. She had no idea how many she would do or where she would put them, but ended up with six. I know it's not a coincidence because there were six known children with Niemann-Pick type A living in the U.S. at the time of Jacob's diagnosis.

For the record, every Bay Area football and baseball team is equally represented as Jake was a big sports fan. In fact, the Giants World Series win in 2010 sparked the mustache craze that unbenownst to us would provide some great pics for the Mo'vember fundraiser that was held just a short two years later when Jakey earned his angel wings {mustache shirt proudly represented}. I included a couple pics because I just love seeing my little man with a mustache.




A couple other favorites on the quilt are...
  • Jake's 1st birthday shirt and super studly tie, which he wore for his cake smash!
  • Jakey's Beatles onesie, which reminds us of his song 'Here Comes the Sun'
  • A "teeny weeny kiwi", which we took off an outfit gifted to Jake by Amber Jelsma's (another sweet NPA angel) family when they visited from New Zealand.

Jaker's birthday suit : )
Raider jammies, which were cut into little squares to include in the quilt.
The real superhero in our lives.
The only picture I have of Jake sucking his thumb because it was the only time I ever saw him do this.
And here's why we have the guitars and music well represented on the quilt. Strumming the guitar with Grandpa Dennis
See...Jake couldn't get enough music. Here he is with his Grandpa Paul
First visit to the Zoo in his little monkey outfit