Happy 9th Birthday Sweet Angel Baby!
This is, along with his angel day, the most difficult day of the year. It is harder than Thanksgiving, Christmas and New Years rolled into one. (Too many bereaved parents, including myself, New Years… is a difficult holiday, the calendar moving forward another year signifies another year away from the last time we got to hold our child). Joe and I love nothing more than to be with our friends and their children and to have parties, see everyone laughing and happy. For weeks my heart tells me I should be planning a party, getting birthday presents ready to celebrate. But my head only reminds me of the tragedy of his disease that stole my miracle child. Christopher spent his first birthday in the PICU, that is something that has always saddened me. It has been 8 birthdays since, and somehow I always think the next year will be easier, be better. But the heart ache is still there, the reminder he’s not here, and I spent an hour throwing up this morning. Despite this, I am reminded how
The week leading up to Christopher’s birthday is always a dull blur. Last Wednesday, I literally walked around all day and no matter what store I was in, tears just streamed down my face. When I got home from taking Andrew to the allergist there was a message on my machine. It was from the Director of the MPS Society asking me if I would support them at an upcoming meeting in Alexandria to advocate before HRSA to make MPS 1 part of mandatory newborn screening. I have not talked to the director in almost 8 years, and today, on this exact day, when I needed a “sign” here was the biggest sign of all. To my friends that continue to write and call and remember, I hope you know how blessed I feel to be able to call you my friend. Thank you for remembering. It is what a bereaved parent fears most is someone forgetting.