The Irony of Christmas

Today was one of those days, you know, those days that you feel too close to loosing the will. It wasn’t anything too big, a few crazy teething poop diaper blow outs, an ant hill that ended up in Chloe’s hair along with Claire’s frustration with my inability to read her mind resulting in several bouts of sad/angry screaming. Then it was dinner time. Jared went to pour Chloe a cup of milk when I noticed that the milk was almost gone and we wouldn’t get more until Thursday, wait Thursday, we pick up the veggies and milk on Thursday, today is Friday, nobody got the milk and veggies yesterday, it was this realization that pretty much threw me over the edge. So I did the only thing I had energy for, I locked myself in my room and went to facebook. Something so oddly numbing about that site, comforting and isolating all at once, it seemed an appropriate place for my pity party. I chatted with two of my rett mom friends (btw, so thankful for you guys, chatting helps, I do feel better). One of them said something interesting, about it being that hard time of the year. Her daughter is younger than Claire and this will be her first Christmas with the Rett syndrome diagnosis. Funny how holidays in general aren’t easy. Add a kid who can’t use their body and they get a lot harder. It got me thinking about the O’Rourke family, who laid their precious little Aidan to rest today. I hate that Rett syndrome takes children, I hate even more that it can happen during any period of time that is “supposed” to a time of joy and celebration. It is so hard to get excited about Santa at the mall and baking cookies when pain like this is so close to you. I know that none of that really has anything to do with Christmas and the birth of Christ, but it has become culturally accepted that that is what we do to celebrate. Tonight I am stuck on this great irony, that as we all slow down to celebrate the birth of the Christ child, a messenger of peace, that it is such a painful time for so many who have experienced loss. Ultimately, it is the peace that I have from the grace I have in Christ that gets me to keep putting one foot in front of the other on these hard days. I guess I just don’t like that the way we go about celebrating so often excludes our girls because of their disability. I would love to hear what others out there is blogoshpere think, do you find it hard to celebrate, how do you do it?

6 thoughts on “The Irony of Christmas

  1. Fake it! I have gotten SUPER good at it!
    I always get weepy around this time too. memories of my long gone parents and happier times get to me, and then there is rett.
    I know that Im VERY grateful to have you to help me through it-as I will do for you. always here for you! glad we could chat…see you soon! yay!

  2. For some reason this year has been more of a challenge than last year. I feel the same way when you say “I guess I just don't like that the way we go about celebrating so often excludes our girls because of their disability”. I just stay out of the way for the most part.

  3. Yes, it hard here, too. We are trying to start traditions for both kids but its hard to make them meaningful for both of them. I agree that so many of the Christmas things I remember doing as a kid aren't so good for Abby. Tonight we are going to look at Christmas lights. Maybe they will both like it, or maybe they will fall asleep and will be up all night. Who knows? I guess we'll just do the best we can and we'll find those traditions that are special for our girls along the way. How to make kids understand the birth of Christ isn't easy either.

    And, yeah, I fake it too. This time of year is just tough for so many people.

    Thanks for sharing. Give me a call soon!

  4. Agree. We don't do the Santa thing but that was before rett. That helps. I think it also helps that such a grand miracle happened on the 1st Christmas, our savior came to the world – gives me hope of other miracles happening around the same time. I think I could deal with the disability of rett if we didn't have the pain – we LOVE to decorate our tree every year, just our little family, turning on Christmas music and putting lights and ornaments up – unfortunatly that tradition was squashed with a 2 hour screaming fit. I try not to fit too much into the Holiday, try not to over extend ourselves, not get my hopes up. We never did have a Christmas without rett since Annie's birthday is in early January and as sad as that sounds, I think it helps – she's never been able to open Christmas presents so we don't feel like it's been taken away. Ditto with Zenaida, I just stay out of the way. HUGS!!!

  5. mj says:

    Ha. Love Erica's tactic.

    We had a church Christmas party tonight. They had dinner and then ushered all the kids off to another room to work on crafts while the parents listened to a musical program. Since I was part of the program, that meant Ryan watched Leah. Nothing for her to do in the craft room. Kind of stinks. But, I'm starting to try to do what Ann Marie talked about – just figure out what works for us. Make our own traditions and experiences. Leah still enjoys things even if she can't participate hands-on. last year was bad and i'm determined to have this year be much better. no breakdowns (for me) in the middle of the family room on christmas morning. no, sir. not this year.
    Now i'm rambling. can't wait to see you soon!

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