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


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

1 comment:

  1. I read this post a couple weeks ago and got teary. I'm so sorry sweet Jake was not at Disney with you:( We just went to Disneyland last week and I thought about Trek ALL day long. It's such a hard balance being so happy and content with the beautiful children we have in our arms while missing and thinking about our sweet boys. I'm so sorry you understand. I loved the lady bug in the hair:) And your 2 girls are soooo beautiful!! Sending your family so much love! xoxo ,Chelsea