I just want to first thank all of you for your response to my opening post this year. You sure know how to make a girl feel loved and how to renew my spirit and dedication to writing again this month. So, thank you, thank you very much. You will never fully know how much your love and support and kind words mean to me.
I wanted to talk tonight a little more about this past year.
Sometimes I feel very petty about some of the things that I grieve over, things that I am sad about losing. I feel petty about this because I look at all of the pain and suffering in this world, and I think to myself... what gives you the right to feel so sad about ...... and......? Look at the things that I am complaining about. so insignificant in the grand scheme of things. When I step back and look at it, I feel guilty for not being thankful enough for all of the blessings I have been given in my life.
But then I sit back and think about it. It's all relative. We each have our own set of circumstances. Our own reality. We are shaped by our response to our own experiences. We each have the right to feel however we feel about our own unique set of struggles. With that being said, I thought I would share a few of the experiences that I now grieve over. They may seem silly to you and insignificant to you.You may even think.... how can she be grieving over that? And while the individual things may seem trivial.... I look at it from a more global approach. When someone you love is struggling in so many areas of their lives, when daily functions are difficult, ultimately you look at that person's quality of life. And how it suffers. And that... that is what I grieve over. I grieve for the smiles that no longer touch her lips, and the laughter that no longer resonates in her throat. I grieve for the sparkle that has dulled from her eyes and the spring that is no longer in her step. {Now, it's not that those things are never present anymore, because that would be more than I could bare. I still see them, but they are sparse. Very sparse. And that makes my heart break into millions of little pieces.}
I'm not sure I'm making any sense right now. It's very late, or very early, depending on how you look at it. I couldn't sleep with this crazy wind whipping outside. (Plus my son Joe is on a camping trip for scouts. I will feel much better when he returns home, takes a nice hot shower, and crawls under his own covers in his warm bed.) Anyway.
Things I grieve over. I'm pretty sure I mentioned this one last summer... but I'm going to mention it again. Every year, since the kids were born, we would go to the mall and get pictures taken for their birthdays (because they are all in April and May) and for Christmas. So it was about every 6 months. And yes, I know this is ridiculous. I never said I was rational. :) I would get the kids all dressed up in their finery all the while listening to them complain about their uncomfortable outfits... Just taking a trip to the mall was stressful. In fact, we usually only go to the mall twice a year, yep... to get their pictures taken. We would painfully go through the photo shoots with one of more children having a meltdown. Getting all 3 kids to smile together was a feat not often accomplished. "Don't worry about them all looking at the camera... in fact... hey.... lets get them all looking at the book together. That way we don't have to deal with that." Every 6 months. My husband was always like... why do you torture all of us with this? I don't know. I just started doing it and then I couldn't stop. I didn't buy many pictures. But I always got 1 of each kid, and one of all of them together. I put them each in a cute bonded brown leather photo album. And I will admit... I LOVE looking through these pictures.So do the kids. So much of that mall trip was difficult, but we would always go to the food court and order a slice of that big, greasy pizza (AFTER the pictures, of course!). And then last year, it stopped. We tried to take the kids down (and I did just look back at my posts... I did write about this day...in fact, it was the last post Day 28. Year 5.) Vicki could not get out of the van to walk into the mall. So, it was just Joe and Ally for those pictures. And that day was hard. It was like I now had a visual reminder that Vicki was struggling big time. When she starts disappearing from pictures. I still get choked up writing this. It's like a visual representation of me giving up on her. And yes. Yes, I grieve over that.We didn't even try for the Christmas pictures this year. We didn't even try.
Another thing that I grieve over. And this one is pretty fresh. Easter. And this whole week of spring break. One of the things about Vicki that I'm sure I've talked about before... She loves calendars. She loves holidays. She loves celebrating. Everything. So do I. Each month (I think) is defined by holidays for Vicki. We decorate. We celebrate. Everything. Even Groundhog day. Vicki still wants to eat groundhog dirt pudding every Feb. 2, because we made it one year. Every year for Easter we would find an egg hunt to go to. I would dress the kids up in their bunny shirts and we would make it a day. Now, it's never spontaneous or easy. But we always gave it everything we had. We always tried to make it work and make it special for all of the kids. We've done some fun egg hunts... from traditional egg hunts roped off in a field, to egg hunts in grocery stores. From egg hunts where they hide real hard boiled eggs (ewww!) to egg hunts at wineries. (Those are my favorite! What's better than enjoying a wine slushy while your kids run through vineyards finding Easter eggs?) And then there was this year. There were no egg hunts. We couldn't get Vicki in the van to go to any. And deep down, I know she wanted to. They all did. Even the 15 year old, who would never admit it. And so we stayed home. Yes. I grieved for that. We didn't go anywhere at all for spring break this year. We've gone to the beach in past years. We've taken day trips. We've always done something to make it special for the kids. And this year... nothing. Vicki hasn't been anywhere since the last day she took the bus to school 9 days ago. And if it wasn't for friends coming over for Ally and Joe and Joe's current scout camp-out, the kids would have done nothing at all for spring break. They did clean their rooms and catch up on homework and moving watching though. ;) And we did make memories here at home. But I don't think most people realize what a blessing it is to be able to put their kids in the car and set off on an adventure. See where the road takes you. I know I didn't realize it, until we couldn't do it anymore.
I think that's what I grieve over the most. Autism and PANDAs has taken away part of Vicki's and Joey's and Ally's childhood. Granted, children grow up. It's definitely a hard process for me. Letting go. Change. No longer being able to dress my kids up in holiday shirts (ha!)... seeing that they no longer feel the childlike magic in a moment, and I no longer try as hard to make those moments magical. Priorities change as the kids get older. I understand that. But. It wasn't my decision. It wasn't Joey's, or Vicki's or Ally's decision. This damned disorder stripped us of making those decisions for ourselves. Maybe it's better in a way. Forcing me to let go. But I'm mad. I'm not ready. Not yet. And I don't think the kids are either. And that's why I grieve over things that may seem silly. We did not get to make those decisions for ourselves. Circumstances forced our hand to do so. When I look at that bonded brown leather photo books, the pictures just stop. And it's not fair. Ally's should not stop at age 10. Vicki's should not have stopped at age 12.5 (the last pic she got at the mall). And Joe's.... well, maybe his should stop at 15. But I wanted it to go through all of high school. :) Yes, I know. I'm still ridiculous. But when I look at those pictures....I will always know why they stopped. And that. That makes my heart hurt.
Grief comes in all different forms. xoxo
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