This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Monday, April 26, 2010

52 Days and Counting

52 Days. 52 Sundays. That's how many sundays we took our son Jose to the cemetary to visit Diego's gravesite the first year after he passed away. This does not include some Saturdays or clean up days or holidays. 52 days, 52 Sundays. That's how many times Jose got off the car to help carry flowers or balloons to place at the site. 52 Sundays Jose helped us clean the gravesite with damp cloths and a toothbrush to clean up the edges. Half of the time he complained about going, and complained about praying our Lord's prayer over the site. He no longer desires to get off the car and be part of our grieving. "Porque siempre tenemos que venir al panteon Mommy?" "Why do we always have to come to the cemetary Mommy?" those are the words I hear weekly from a four year old who has grieved more than any other child I know. 52 days! 52 Sundays were spent having a picnic on sunny warm days or under an umbrella on rainy days. An occasional balloon launch for birthdays and memorial days were the funnest days for Jose. Then there was the holidays...What 4 year old spends Christmas day or easter morning at the cemetary??? No one. Except mine. Why? I have no answer. It breaks my heart that he was not spending those 52 days at home playing or visiting family or going to a park. That's 52 days we could have taken him to the zoo or taken him to a baseball game or out for pizza. Jose has yet to question me why we easter egg hunt at the cemetary, he just knows it's part of our lives and is as patient as can be. He has made so many discoveries at the cemetary. He has discovered new hiding spots behind pine trees and behind the tall head stones. He discovered which windmill decorations are the fastest and which flowers are real and which ones are fake. He discovered that when the sun is bright it makes the stones look shiny and when it rains it becomes somewhat muddy. He's discovered that if he steps or runs across a head stone that nothing bad will happen. He's made so many discoveries for such a young age and he will continue to make many more. I know tougher days lie ahead when his younger brother Adrian will have to lie down next to Diego. And when that day comes, I will feel at peace that the cemetary will not be a strange and scary place for Jose.

Proud Mommy of:
Jose (4rs)
Diego/Zellweger's (angel in heaven)
Adrian/Zellweger's (2 yrs old)

1 comment:

  1. I love that you made the cemetary a place for a fun, child centered activity like the egg hunt. Filing that away for when our time comes. Thanks for sharing. Hoping the next 52 weeks will be as happy and peaceful as possible.