Category Archives: Uncategorized

Today, October 1st, marks one year since I gave my girl a hug. Miss her beyond words. Today I will remember her smile and her will to live by doing one of her favorite things, “ Mommy lunch beer truck” If you want to see her smile and how much she lived and loved, watchContinue reading “It’s been a year”

Somehow this phrase which really makes no fucking sense keeps entering my mind. As I sit here with some tears, the only way to explain it is it is the last time I am seeing memories of my Sam from a year ago knowing this will be the last time it will only be aContinue reading “Last of the Firsts”

It really is real now. Her marker was placed on May 20th. June 1st was 8 months. Today is 35 weeks since I hugged her. Maybe Panera isn’t the place to do this while waiting for my car to be serviced. Damn tears. It is the “special” place. My boys and my niece J willContinue reading “It’s Really Real”

Mommy Lunch Beer Truck This first without Samantha sucks. First time since she could talk I didn’t get to hear her say “happy birthday Mommy” today. Ugh. She loved birthdays. The singing, the presents and of course cake. So, I am having a mommy lunch at the beer truck. This beer truck happens to beContinue reading “Mommy lunch beer truck, M.A.N and 13 days”

I want to remember everything about her. I want everyone who didn’t know her to hear about her. I miss her so much. The stories of her need to be told and read. The pain she endured to live was heartbreaking, but she smiled and loved through it all. I have to remember the smilesContinue reading “She Lived and Loved”

This picture is Sam with her victorious, I won, smirk. The memory of this is a good, funny one. My mom was visiting us in San Jose and we took Sam to Toys R Us to let her choose a toy. A toy. Sam was having none of that. She saw this wagon and knewContinue reading “Choices”

Last Friday to this Monday was my turn. Darren left today until Monday. This is what you do when you have a perpetual 2 year old and want to see your kid who plays college baseball. Or see the other kid who is also out of state for college. Divide and conquer. Our kids trulyContinue reading “Divide and Conquer”

This is a reality blog. Don’t worry, I am ok. I really am. These days are long and the world is starting to open while my(our) world gets smaller. I am now out of respite hours so down to minimal time away from Sam. She’s still not back at her adult day program and mostContinue reading “It’s a small world”

Need to give some background information before we get to the main story. Sam is the oldest of three. When the second child came along almost 5 years later, we had no idea what to expect with all we had been through with Sam. The second, Hayden, was a dream of a baby. He knowsContinue reading “The Haircut”

For years we’ve been trying to find an answer why Sam has been declining. We’ve thought if we ever do find an answer she will probably be 1 of 4 people in the world with the same diagnosis. Well, Sam makes it 5. There are 4 others around the globe that have the same geneticContinue reading “It will probably be 1 of 4 in the world”