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My Story

I started this journal when our son, Gavin, was hospitalized as an infant... and I'm still writing over 2 years later. Along the way it's become a baby book, a life preserver and a therapy tool. Every day brings another challenge, another milestone, another miracle.


Follow us on the road to progress, acceptance and healing.


Welcome to our daily journey...

I started writing this journal on January 26, 2008 as I sat in a tiny hospital room next to our son's crib.  Gavin, who was four months old at the time, spent eight weeks hospitalized for RSV and Botulism.  He is our first son and, unfortunately, this was not his first long hospital stay.  His first month on this Earth was spent in the NICU.  Although he was born at 37 weeks, he acted like a preemie - he was hypotonic and couldn't suck.  His first year was challenging and overwhelming with feeding tubes, oxygen therapy, early intervention and struggling to keep hearing aids in his little ears.  He was born with permanent hearing loss in both ears.  Before he turned one, my husband and I took him to the St. Katharine Drexel Shrine... and not long after, his hearing was restored.  Those little hearing aids sit on a shelf now.  Gavin was born on September 29, 2007.  Six days before his first birthday, he was diagnosed with Cerebral Palsy.  He has defied medical predictions... inspired thousands... and has overcome many obstacles.  Every visit to this website, to us, is another prayer or positive thought for his healing.  He is our little superhero.

When Gavin was six months old, we found out we were expecting again!  Brian joined our family on December 16, 2008.  It was quite an experience having a baby that they let me keep in my hospital room!  Brian is such a joy - and a great little brother to Gavin.  He has inspired a lot of physical progress in his big brother!  We think he's Gavin's best therapist and are relieved he doesn't charge us for his services.
 

Most recently, we lost our first daughter.  After 5 1/2 months of a blissful pregnancy, our little girl ~Darcy Claire~ was born still on May 10, 2010. 

The road has not been easy.  Many people ask why I write every day - why I write such personal, intimate details from my life.  My only answer is this:  I have to.   I write to make sense of it all.  I write to work things out in my head - and my heart.  I don't write for validation.  I don't write for affirmation. 

I write because I have to.

And I'm glad to take you along on my journey.

Thank you for reading our story.  And thank you for caring about our little family.

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kate leong posted a new journal entry.

Looking for us?.We've MOVED!.From January 26, 2008 to May 31, 2011, CaringBridge has been our home. The CaringBridge family have been so good to me - even featuring our ... Read more

Jodi marhefka signed gavin's Guestbook.

I have been blessed with 3 healthy sons, who are now grown.  I never took a second of this for granted.  We have had a brain injury with our oldest, a near death with ... Read more

lori schlekeway signed gavin's Guestbook.

Beautiful family inspiring story and what a journey. I too have two caringbridge pages for my two sick children. Its my therapy to have their stories written down. My son ... Read more

Nikki Montagna signed gavin's Guestbook.

       In honor of Gavin, Brian, Darcy, your husband, yourself, and all of your family members (((HUGS))) via cyberspace Read more

Nichole Anderson signed gavin's Guestbook.

Hello. I just found your pages and story from being on Tripp Halstead's page. I have only read how you met your hubby, and that you have 2 sons, and many losses. My heart ... Read more

kate leong posted a new journal entry.

Looking for us?.We've MOVED!.From January 26, 2008 to May 31, 2011, CaringBridge has been our home. The CaringBridge family have been so good to me - even featuring our ... Read more

kate leong posted a new journal entry.

Happy Memorial Day!.The importance of this day is not lost on me.  As the child of a retired Navy Captain, the sister of another retired Navy Captain, the niece of a ... Read more

kate leong posted a new journal entry.

We're HOME!!!!.No matter how much we may need to get away.  No matter how much fun we have while we're there.  Mommy has her limit and I'm always SO ready to come home ... Read more

kate leong posted a new journal entry.

Things I learned from day two of our getaway:.Money put into a slot machine quadruples... and then some!  Woo Hoo! More money for the "Mommy's Plastic Surgery ... Read more

kate leong posted a new journal entry.

Things I learned so far on our little getaway:.Money put into a slot machine stays in a slot machine.  At least for this non-gambler!.Sleeping in is overrated if it takes ... Read more

kate leong posted a new journal entry.

I am so ready for this trip.  Today was such a whirlwind... I think I tried to cram too much into my last day at home! This morning, after getting the boys up and in ... Read more

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