Friday, July 29, 2011
Funky town ...
Sometimes, we all get in a funk. I'm in one now, up to my shoulders. The easiest thing to do is hide myself away in the house, soak up the misery, and wait it out. Unfortunately, Emily is very high needs and soaking in misery is not an option. Rather, I am running around all day doing her medical care and trying to sprinkle some play and love and cuddles in, while splashing in the misery puddle.
I know it's not easy having a special needs child, and I know it's not something to take for granted. There are a million amazing wonderful fantastic things I have gained by being Emily's mom.
But sometimes it's just HARD. It's summer, and everyone around us is running around and doing fun things. The fair is here, but Emily wouldn't like it. She can't handle the heat, she doesn't eat the delicious and disgusting fried foods, she hates the smell of animals, she wouldn't be able to ride hardly any of the rides. She gets bored and grumpy very easy. We live mere miles from the beach, but there's no way we can go there. Emily hates sand, she hates water, not to mention that she has a central line that would NOT be good to get sand/water in. We would have to just sit on a blanket (after carrying here and all her connected accessories because her chair can't roll on sand). She would be miserable, and in turn so would we.
The biggest frustration is that we can't just pick up and go. Most people with kids can, even though they might think they can't. You grab a diaper bag or a bag of snacks and you go. In my case, I would have to pull up meds for every few hours, make sure her TPN is running okay, get her IV bag ready for the afternoon, and prep the next round of TPN. Not to mention figure out where to change her diaper/clothes when she has an explosion, and how to clean her up if she retches all over herself while we are out.
I'm just frustrated. I know that I am incredibly lucky to be Emily's mom, and I wouldn't change it for the world. Please don't tell me how blessed I am. I know. I am also tired, sad, frustrated, and bored at home.
And if you are one of our friends in real life and reading this, PLEASE do not be upset or offended by this. It happens every day, whether you invite us somewhere or not. PLEASE do not stop inviting us to every thing. The rare times that I *CAN* get out and go do things with you, are worth all of the "No, sorry" replies. ((love))
at 9:08 PM