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.

Wednesday, May 15, 2013

You Are My SONshine

You Are My Sunshine
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away

The other nite, dear,
As I lay sleeping
I dreamed I held you in my arms.
When I awoke, dear,
I was mistaken
And I hung my head and cried.

It's been six months since I last got to hold my sweet boy in my arms. I miss Jakey with every little bit of my heart. It's so hard to believe that six months have passed. Six months seems like such a long time, yet the time seems to have passed by so quickly. When you consider that six months is roughly one-quarter of Jacob's lifetime, it just makes me sad. Jake should still be here. Regardless of the time that has passed, Jake is still on my mind every day from the moment the sun rises and throughout the day, until I lay my head on the pillow to sleep at night.

Over the past five and a half months (since Jakey's sister was born), I've had many occasions where I've searched the depths of my "mommy brain" to come up with some nursery rhyme or song to sing to little miss Kelly. Of course, "You Are My Sunshine" has popped into my head in several instances, but I can never quite get the words out without getting teary. Such bittersweet words. This song is actually quite the opposite of bright, beautiful and happy -- words I associate with the sun. It makes me think of my little man. Jacob is the sun; my SON, who is, and always will be a bright light in my life even though I can no longer hold him in my arms. Even on the saddest of days, like today; it makes me so happy to picture his precious face and remember our joyful times together. I miss kissing those sweet cheekies of his and gazing into his big brown eyes.

When I think of Jake, I prefer a much sunnier song that helps me to remember him in such a wonderful way! I think I've written about Jakey's song enough that most people should know it by now..."Here Comes the Sun". As a matter of fact, in the last week I received two very special gifts about this very memorable song.

1. A lovely mother, who I was connected with via another one of the NPA babies, has been following Jacob's blog for a while now. Last week she sent me the sweetest video clip from a children's performance she attended with the song "Here Comes the Sun," along with a note saying she was thinking of Jacob and our family. That message brightened my day!!

2. A co-worker of Josh's step-dad told him about these beautiful wind chimes that she had seen, which were coincidentally made by a company called "JACOB'S MUSICAL CHIMES!" I'm not kidding!! Long story short, Josh's Mom and step-dad Paul tracked down this company and bought us the most absolutely perfect wind chime, which they had customized just for Jakey. They placed one at the cemetery with Jake and gave us another one, which is prominently displayed on our front porch alongside a special tree that was given to us after Jacob earned his angel wings.

Here Comes the Sun wind chime. If you look closely, you can see the reflection of a hummingbird garden stake that we have near Jake. I didn't even notice it, until after I took the picture. I'll save the hummingbird story for another day.  
Love you and miss you everyday little man!! 

Sunday, May 12, 2013

A Mother's Love

Today is a day to celebrate the amazing mommas in our lives -- Happy Mother's Day!! Sending special thoughts to all the mothers who have lost a child, especially to those having their first Mother's Day without their precious little ones. This is not an easy day...I know. I miss my Jakey boy so very much!!!

Today, I'm grateful for my sweet kiddos. Jacob and Kelly have brought such immense joy into my life, taught me countless life lessons, and gave me the opportunity to feel what it's like to love unconditionally. Becoming a mom was the moment when I found true happiness. I have experienced a love so deep that I wonder how my heart is even big enough to hold it all!

Motherhood has opened up my worldview and allowed (often forcing) me to experience emotions more fully than I ever thought possible -- joy, love, affection, empathy, anger, fear, courage, hope, envy, compassion, heartache, grief. Out of all these emotions, nothing quite compares to a mother's love for her child -- a love that knows no limits. For the mothers like me, who's hopes, dreams and lives have been forever changed because they have/had a beautiful child with special needs; we ride this emotional roller coaster daily.

Despite being given the most devastating news possible [Jacob's NPD diagnosis], I chose not to dwell on an uncertain future, but rather focused on the present because every minute with Jacob was a gift. That's not to say that things weren't difficult, even with everything I experienced with Jacob; I was able to find the joy in each and every day. Jacob was a true joy in my life -- he still is.

I really never knew how I'd be able to go on in life without being a mom, which is why Josh and I chose to have another baby. I have been blessed with Kelly, who has given me a second chance to raise a child and to enjoy all the "firsts" without fear that they'll soon be lasts. I get to be a 'mommy', which is the only thing I've ever truly wanted in my life. Having Kelly does not take away the pain of losing Jake, but she has brought joy back into my life during a time where it felt like everything else had been taken away. Kelly gives me at least a hundred reasons to smile each day.

I promise I don't intend for this to be a sad post...really, I don't. I have felt a lot of mixed emotions about this day and just wanted to share a bit about how grateful I am to be a mom to two amazing babies. Jakey will always be a baby to me.

Since it's Mother's Day, I do want to show some love for the two most important moms in my life. I'm so grateful for my Mom (Kathy) and mother-in-law (Sheila), who have supported our family through the most difficult time in our lives, even when there were no words of comfort to offer. There will never be a 'thank you' big enough to express our gratitude for all that you do for us. Love you both!!

I went through some pictures to find some of my favorites with my little man and I ~ precious memories and moments in time that I will cherish always!! So grateful to be your mommy sweet Jakey.

I knew I loved you before I met you

1st day at home with my sweet bundle of BOY!

My happy boy ready for his 1st time at the beach

Checking out the fishies with momma

Little man loved going to the Zoo

A little fun at the lake - Jaker's 1st camping trip

At Bodega Bay - one of our best family vacations. Love that Jakey used to always hold my hands

Snuggled up with Momma on Christmas morning and resting his head on my shoulder, his favorite way to snuggle

One of the only pics I have with both kiddos - Jakey's little footsies and baby Kelly in my tummy
"No one else will ever know the strength of my LOVE for you. After all, you're the only one who knows what my heart sounds like from the inside."