Disjointed Mama

With Ehlers Danlos Syndrome everyday is a surprise as to what it will bring and how my body will handle it. Most people I know who suffer from a chronic illness or pain don't like to complain about their pain nor do we enthusiastically share our newest and medically unexplained ailment like we are in a competition for who is toughest for making it through the day. We are silent warriors, who know all too often that the price for what we accomplish today will come due tomorrow. When you suffer from a chronic illness and are also a parent, you have the added fun of trying to balance being the parent you want to be with the parent you are physically/emotionally capable of being at any given moment. And that is a tough thing to understand as an adult, let along for your kids who can struggle to understand why yesterday you could play catch and today you aren't up for it. There are everyday niceties that people exchange with their loved ones, their friends and colleagues that, fo

It's that time of year again and the children are screaming with delight that they have a whole week off of school. And then they hear the word they dread more than shots at the doctor: CAMP. That is right, they believe they are the only children on earth who are forced to endure camp during school vacation week. For five very long years I have had to hear: "we are the only kids in the whole school who don't go on vacation or who don't get to just hang out at home." "it's so unfair that you work. why do you have to be a working mommy?" "this camp is awful; we hate it;" "why? why mommy why? why can't you take the week off?  In case the endless whines and pleas weren't bad enough, I also have a hard time finding actual camps and when I do it has hours that are less than accommodating for a full-time, 40+ hours a week working mom.  So what's a parent to do? Here are some survival tips that help me get by. Researc

We've all been there, life gets away from us. Our pursuits and hopes fade like background noise as the hustle and bustle takes over. New medical challenges presented themselves and my family has struggled through the recovery of not one, but two tethered spinal cord syndrome surgeries in a five month span of time. As the dust settled I realized I'd lost my self. I'd been increasingly sad, frustrated, and feeling lonely. Getting ever further away from my ideal weight and not seemingly anywhere closer to answers for that or other health problems. So after a long break from writing, I'm back! Here's what I've learned since I last wrote: Children are resilient. If you stay positive and give them encouragement, even when things seem gloomy or terrifying, they will keep their head held high. You just have to remember to model it (even if you are dying on the inside). My son was so brave going in to the OR for his spinal surgery, cracking jokes to the surgical tea