Five Ways to Test Your Sanity
Posted: April 4, 2013 Filed under: advocacy, Down syndrome, parenting, personal growth | Tags: blogging, Down syndrome, Facebook, humor, kids, parenthood 8 Comments- Have a kid. Have another kid. Discuss the ins and outs of having a third, but in the midst of that, get knocked up.
Yes. It is true. Our planning was… meh. Honestly, I’m just tired. My bod is tired. I’ve been pregnant or nursing since early 2008. I also think that this medical mayhem wouldn’t be quite so painful if we didn’t have a 30 pound, 2 year old tyrant (aka Chipmunk) in our house. That girl has got to be stopped (but would someone else please do it, while I take a nap?). Poor Mouse is so thoughtful and forgiving, she always gets the crap end of the deal despite my efforts. Mouse, I’m pretty sure your sister needs a good beat down. I’ll pretend to look away and delay my intervention just a few seconds. Trust me, she deserves it. - Start to think all on your own, that your third kid has Down syndrome, although not a one medical professional has ever brought it up.
The experience of realizing something so huge on my own, then having to work through my feelings of denial and fear has been a game changer for me. I think this part of our story is pretty unusual; most people find out prenatally, or at birth when a doctor “breaks the news”. I really thought I was going crazy for a few days. Wasn’t sure if I had postpartum depression, maybe was having a mental break, something. Then I realized that nothing was wrong with me. I was really having an inexplicable connection and communication with my baby.
It isn’t without its issues, though. I’m still really trying to work out how much to follow my intuitions on things, how much to listen to doctors, how much to fight, how much to accept. On good days, I’m feeling a connection to the world and its life-force that is breath-taking. Other days, it feels more like wading into quicksand. The mind games and second guessing I’ve done with myself lately are not productive, to say the least. - Write a blog.
Well, it is double-edged. As I type this, I really should be in bed, because in a few hours, three very small people will have some very big needs, most of which I will be expected to fulfill.
The alternative, however, is for me find childcare, to go to someone’s office, sit on an only moderately comfy couch and talk about myself for 50 minutes. The person across from me will nod and drive me crazy by never divulging her real thoughts on my situation, instead asking me vague open-ended questions about the same crap I just posed to her. Then I’ll fork over a couple hundred dollars.
Blog, clear winner. - Take it upon yourself to understand every medical condition that humankind has ever faced, for all its time on this planet, ever.
You know how the old people kept telling you when you were younger that you should pay attention to school, because you never know when you might need the knowledge? Well, it sucks to admit that they were totally correct.
I went to college thinking I was the smartest little chickie around (self-centered and egotistical, much?), took Bio101, realized I actually had to study, and promptly majored in Psychology instead.
Well. I wish I had a time machine, so I could go back and tell my young self, “Pay attention!!! In 15 years, you are going to have a baby with Down syndrome. When you are pulling your hair trying to figure out what the hell is happening in his little body, you will need all this biology and chemistry. Stop wondering who on campus has some pot to buy.”
Alas. I have no time machine.
We have been trying to figure out what to do with LP’s thyroid. This is another area where I’ve had an inexplicable gut feeling. I’ve been saying since he was first diagnosed with Ds that something is wrong with his thyroid. Turns out there probably is something wrong. Actually deciding whether to leave it alone, treat it naturally, or treat it synthetically has given me some honest to goodness college bio PTSD.
I’m. So. Confused.
I finally decided that the madness needs to stop when I found myself trying to understand this:
How would this not drive someone to the brink???
I know I am trying to control something that might be not controllable. I just hate the idea that my baby is struggling in his body. Met with a pediatric endochrinologist today. Grilled her with a huge list of questions. She actually chuckled and said I was one of the more “intense” moms she had ever met. Read: “You’re crazy but I understand because I’m a mom too”. We made a plan, I’ll share it at some point when I’m feeling a little more sane. - Get addicted to Facebook.
It is true. Latke exaggerated a little, but not by much. Again, though, I feel about this as I feel about the blog. The other mothers, especially, have saved my life in countless ways. But do you know how much communication can go on between 150 women in a 24 hour period? I can’t stop, that is for sure. These ladies and their families have become a little (ok, large) kindred clan to me. Perhaps I can hire a secretary who will read my FB feed to me, while I dictate my comments and which posts to “like”. No? Not reasonable? Shrug.
In all seriousness, I am tapped out. I am also still very torn up about the rent-a-cops who killed Robert Saylor. I’ve been writing about it, and want to actually do something about it, but am feeling torn in too many directions. I’ve come to the hard decision that I need to get through this stuff with LP before anything else. Keep the Taters alive, priority one. In the meantime, I still plan on writing letters and making calls, but I can’t be in the center of things. Even the small bloggy debate that happened here occupied two or three days of my life to a point that I couldn’t keep up with anything else.
So I think it is time for me to regroup. I know that we are fortunate to not be dealing with things more serious, but I’m still finding myself overwhelmed. I miss our friends. Friends, I feel like the only time I ever see you guys anymore is to ask for favors and leave the Taters with you. Can we hang out soon? I need to perform some basic hygiene. I need to cook more. Latke and I could go for a date night. Our toilet looks scary.
And with that, I go to bed.
Kimchi Latkes 
Funny, I was just thinking our toilet didn’t look that bad. Oh, how my standards have fallen!
Remember there are many of us fighting. Lay down your sword mama and let others carry on for awhile. When you’re rested, you can step in and let someone else rest. That’s what community is for. Love ya…oh and you know I thought my third child had DS. I kept thinking “Surely someone will tell us, right?” I don’t think she does but she has a lot of features that I think some people would see as being DS makers.
Thanks, mama. I didn’t know that about your third. You know I met a woman who had pretty much every marker for Ds, but didn’t have it. That is why it is a syndrome, I guess. Mysteries.
I love that I’ve connected with all the mamas on facebook. My BDS (before Down syndrome) friends have either forgotten my number and aren’t able to call anymore, or just don’t know what to say to me when they do gather the courage to call, or just ignore me. I feel really disconnected from my previous life. It’s very easy to get overwhelmed and I only have one kid–I can only imagine throwing other kids in the mix. You’ve got a lot of balls in the air–and it’s OK of some fall. Take care of you and your family, other things will fall in place. And follow your instincts–you ultimately know what’s best for your little dude.
Thanks, lady. Had a little chuckle with the BDS. We’ve been lucky to have friends who “get it”, but even still, it is hard to even find time. Part of another reason I’m addicted to FB, it is my only adult interaction during the day, ya know?
Love all of your posts! Always excited when you post something new :)
I like the humor you use to talk about the daily chaos, sometimes that is all a person has. I cannot imagine what it was like to be the first to suspect your child had Down syndrome, wow. As far as your comment about trusting your intuitions – trust them! I am a father and from my perspective my wife’s intuitions are usually pretty close, close enough that the few times you are wrong are worth it.
I can’t lie, that first week was pretty darn crazy. I would go as far as to call it the biggest mind f**k that I’ve ever experienced. The hubby has decided that mother intuition is also to be trusted. Unfortunately that screws with my head even more, each time I think, “This is the time I’ll be wrong!” ;)