Again, it's been a while since I've posted. A lot has happen and every time I think of posting again, I am overwhelmed by covering all that has happened. I decided today that I am going to release myself from that. If you want to see all the stuff that has happened in the last few months - at least the fun stuff - please visit the Facebook site. I know that not all of your have Facebook. Some of what has happened will be re-posted as it comes up again. Please be patient. In the meantime, back to our irregularly scheduled blog....
I remember when I was a child receiving Christmas cards. I don't remember sending them though. We were never the type of family-for various reasons- that did that type of thing. When I got older, I decided to take up the tradition. I would search for the perfect Christmas card every year. I often stressed, bought three types, and then never mailed them.
In the last few years with the explosion of Shutterfly and the like, the annual Christmas card, and its accompanying stress, has gone up a notch. It's not about whether you have a foil lined envelope anymore. We need to find a way to encapsulate our year through photos and sometimes text to people whom we often never see. Do you get a portrait done or do you use casual shots from the year? How many photos do you include? Who is on your card? Is it just your dog? Since my stepdaughter rarely sees us in the winter, our Christmas card was a photo from a portrait session scheduled well in advance and a brief summary of our year on back. That was how we answered those questions.
This year I don't know what to do.
For us, this year's Christmas card is loaded with subtext. This is the year that we found out Daniel has MLD and is dying. Do I just slap a happy photo on and call it a day? Do I include a summary of what happened this year? I couldn't imagine addressing Daniel's medical issues in a pithy, cheerful note. However, ignoring it would be leaving out the most important thing that has ever happened in our lives.
I decided to put together some happy photos and call it a day. Then I saw this card and this one. They were adorable with a great format. They let you tell everyone about your year in a fun and interesting way. I immediately decided against it. I would send a card but that's it. I was not going to tell people about our year on the card. In fact, I probably never will again. It's only going to get worse from here on out. Daniel is going to get sicker. Then I realized something.
This year has been amazing and I wanted to share that on our Christmas card. Yes, Daniel was diagnosed with MLD. Yes, this year we had to face the greatest pain a parent can have, that of losing a child. But in those moments and in the bucket list items we did with Daniel, we also found the greatest joy in our life. I have never loved my family, my husband, or my son as much as I have this year. I never knew the power of community before it formed around us. We visited Disney twice. Daniel rode in three helicopters, numerous firetrucks, and got to sit in a real NASCAR racecar. He did more in these last few months than many do in decades.
We carry the devastation of Daniel's disease with us every day as we see MLD take away his body and his mind. It is a horrible, dark year in those moments. But in that darkness, we see his shining smile, his incredible love, and his soul's joy.
I want it all to be on our Christmas card because this is who our family is now. This is who we are.
I remember when I was a child receiving Christmas cards. I don't remember sending them though. We were never the type of family-for various reasons- that did that type of thing. When I got older, I decided to take up the tradition. I would search for the perfect Christmas card every year. I often stressed, bought three types, and then never mailed them.
In the last few years with the explosion of Shutterfly and the like, the annual Christmas card, and its accompanying stress, has gone up a notch. It's not about whether you have a foil lined envelope anymore. We need to find a way to encapsulate our year through photos and sometimes text to people whom we often never see. Do you get a portrait done or do you use casual shots from the year? How many photos do you include? Who is on your card? Is it just your dog? Since my stepdaughter rarely sees us in the winter, our Christmas card was a photo from a portrait session scheduled well in advance and a brief summary of our year on back. That was how we answered those questions.
This year I don't know what to do.
For us, this year's Christmas card is loaded with subtext. This is the year that we found out Daniel has MLD and is dying. Do I just slap a happy photo on and call it a day? Do I include a summary of what happened this year? I couldn't imagine addressing Daniel's medical issues in a pithy, cheerful note. However, ignoring it would be leaving out the most important thing that has ever happened in our lives.
I decided to put together some happy photos and call it a day. Then I saw this card and this one. They were adorable with a great format. They let you tell everyone about your year in a fun and interesting way. I immediately decided against it. I would send a card but that's it. I was not going to tell people about our year on the card. In fact, I probably never will again. It's only going to get worse from here on out. Daniel is going to get sicker. Then I realized something.
This year has been amazing and I wanted to share that on our Christmas card. Yes, Daniel was diagnosed with MLD. Yes, this year we had to face the greatest pain a parent can have, that of losing a child. But in those moments and in the bucket list items we did with Daniel, we also found the greatest joy in our life. I have never loved my family, my husband, or my son as much as I have this year. I never knew the power of community before it formed around us. We visited Disney twice. Daniel rode in three helicopters, numerous firetrucks, and got to sit in a real NASCAR racecar. He did more in these last few months than many do in decades.
We carry the devastation of Daniel's disease with us every day as we see MLD take away his body and his mind. It is a horrible, dark year in those moments. But in that darkness, we see his shining smile, his incredible love, and his soul's joy.
I want it all to be on our Christmas card because this is who our family is now. This is who we are.
Thank you for this deeply honest post. I know for me it encapsulates a lot of the thoughts I've had about telling people what's going on with us. It's somehow terrible but soul-ringing to hear so many of my mental dilemmas summed up so well. God bless you guys.
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