*This is not a “Thanksgiving” post in the sense that it’s just not on the topic, not that I’m not thankful for all the blessings in my life* (and I’m not going to use the word not again hopefully this much in a single sentence)
Responsibility is one of those things that has both good and bad connotations. It means you hopefully get to do cool stuff but that there are heavier consequences for your actions. Having a child is like that- it’s great, but there is a huge work load.
I crave the easy life. I hate admitting this, perhaps deep down I know that it’s not good for me, but the idea of having a maid to clean and a personal chef to cook for me sounds grand. It’s not so much even the physical things sometimes, although it would be nice. I wish that I didn’t have a special needs child. I wish that I wasn’t so comfortable with occupational, physical and speech therapy. I wish that it didn’t make me die a little on the inside when I see a child a year younger than Sum who seems more advanced in any way. I know that hardships make you stronger, but instead I feel that my hardships have made me weaker. I’m at the mercy of my feelings that I used to be able to hide so well. I am a stripped down, naked version of my former self. I feel so very small and helpless.
I’m not trying to complain here, I think that it’s just that I’m still not quite sure who I am anymore. Sometimes I just want to get OUT but I don’t know where to go so I fold my baby’s clothes and try to not go mad living in this small space. If you think I’m ungrateful for all that I have, you’re wrong. I’m so very painfully aware of all my blessings to the point that I feel guilty when I complain. This blog is more of a venting zone where I can try to get the jumbled thoughts out of my racing mind and make sense of my life as it is today. This blog helps me stay sane.
The newest thing is that we’ve been having this ongoing medical problem with Sum for almost the last year. The condensed version (and probably somewhat incorrect since I forget the exact wording) is that the muscle walls of his intestines are weak- a rather common problem with WS as I have come to find out- and thus his has an prolapse of his intestines. It sounds bad, it looks worse. It doesn’t cause him much or any pain though so that is a blessing. It’s getting worse, however, and B thinks there is no way other than surgery. Perhaps that is true, but I’m going to give the “all natural” approach a try first. After doing research on both Sum’s condition and then finding an obvious link to Celiac’s disease, I’ve decided that we need to do a drastic diet change and take out all gluten products and perhaps dairy too. His pediatrician basically told me that this was possible an option a week ago, but after all the research I’ve done I don’t see a way around it if we want to avoid surgery.
I feel so helpless and angry. I have known for a while in my gut that I needed to do this but I have avoided it because it’s a very difficult thing to do. I have no pretense that it’ll be an easy switch, especially when about 80% of what he eats now is dairy and wheat products. I just want to have a normal life. I crave it. I don’t want this. I want to just be a careless chicken nugget and fries mom that feeds her kids processed, convenience foods. OK, not really, but when I see these other moms, they just seem to have it so much easier, not thinking about what they are feeding their children. and the kicker? THEIR KIDS ARE FINE WITH ALL THE PARTIALLY HYDROGENATED OILS, MSG, FOOD COLORING, REFINED SUGAR AND OTHER “POISIONS” THAT I TRY TO AVOID. Yes, that was a rant. Its just frustrating that I have to DO so much more effort for these non-results. I know my kid will be healthier in the long run, but right now I just want it to be easy. I don’t want to have to think about this so much. UGH. Help. Seriously, help. I need ideas of food that my child will actually eat that is dairy and gluten free. This seems like an impossible task. I don’t want to be the mom who asks what the ingredients are in everything, everywhere she goes.
So, today on a day where I feel that I should be focusing on all the things I’m thankful for, I’m writing a post basically griping about all the things I have no control over. EEsh. My guilt raises it’s ugly head. But this is me. I’m not going to try to say something that is warm and fuzzy just to say it. I want to mean it and most of the time I do. Today though, I’m broken inside. I’m stressed, sleepy and frustrated that I ate around 10,000 calories worth of Thanksgiving food. It’s not been a bad day in any measure, it’s just the post-hype where reality settles in around you like a dark blanket. I can see that it’s there, wrapping and strangling me but I’m not trying to remove it. I just want to not try for a moment because I know tomorrow that I’ll be back in “doing” mode and chase these feelings away until another night when I’m sitting here alone at the computer. I realize I’m not making a huge amount of sense here so hopefully I’ll be back here in a day or so recounting some hilarious story that makes us all laugh…