People seem to think that special needs parents have a super hero cape that was issued on the day our kids were diagnosed. If they do, I must have skipped that line. Or else the dry cleaner lost it. I think that perception is because so many of us are able to function beautifully in crisis situations. Yes, I can handle surgeries and hospitals and waiting rooms and tests and and and.... What you don't see are the meltdowns that occur over the little things. The things like it taking 30 minutes and a crowbar to get a pair of pants over a leg not shaped like everyone else. Or the destroying of a $15 bandage cause you dropped it. Or taking a crew of people to accomplish a simple shower. THESE are the times when that mythical cape lay torn and tattered in a crumple mess on the bathroom floor that hasn't been mopped in a month. These are the times you don't see. Me screaming and crying cause I can't find a shoe. Or being so exhausted that literally sitting in this chair hurts. Or going postal on the person driving too slow in front of me. My imaginary cape tends to hide all that from the world. Or maybe it doesn't. Lately I have been tired and cranky and judgmental. I have ...
I’ll Take Barb, With a Side of Order of Chaos, To Go Please
It's another one of those mornings that I feel like I must write. Something. Not really sure where/how this will end up so please just indulge my need to type. I have fizzy pop brain. That is what I call it when I feel like my brain is bulging with too much information and then someone comes along and shakes it all up. I have particles of information flying everywhere inside my brain trying desperately to get out. Yet none of it makes sense. This is fizzy pop brain. I am shocked the number of times in the last few weeks that I have had a conversation related to chaos. Last week when I was headed to New York my super organized friends were appalled I was packing an hour before the car got here. In New York people were amazed I wasn't worried about checking my flight. Lots of these little conversations about how different my thought processes are from most of the people I know. I fly by the seat of my pants. That sometimes means my underwear shows. But mostly its a great thrill. I wasn't always like this. But 13 years ago I changed. I started to learn that life was not something I could control. I could have the best laid plans and it didn't matter. There were big things that I ...
Dear Spa Fates,
You sorta suck lately. Just sayin'. People think I have this awesome gig going on reviewing all these awesome spas and I have go admit, last week when I was in heaven at Orange Skye you had me fooled too. But you are a tease. You lured me in with the promise of botox last Friday, only to have your friend, Demon of Infectious Diseases visit me instead. In place of muscle relaxing facial juice, I was served a serious case of 'oh, better not to mention it'. Oh, and that awesome invite to Vail for a full spa day? Yeah, really cool of you to put it on the one day I have an appointment with Carter that can't be changed. And don't think I didn't notice know you screwed up my video of Mary at Relaxed, Yet? But I got you back for that with some awesome footage of how to give yourself a butt massage. I will be publishing that soon here. You need to stop screwing with me. My last few blog posts are pretty indicative of the fact that I am about to go postal on someone. I really didn't want it to be you. Honestly, I really like you and the gifts you give me. SO can we make a deal? You stop making bad things happen on the few days I get to relax and I won't write you nasty ...
On Being Brave
Being brave doesn't mean you aren't scared. Being brave means doing something even though you are scared. This line from Franklin Goes to the Hospital has stayed with me for years. I believe some of the greatest wisdom can be found in children's books. Probably why I believe that Theodor Geisel was one of the wisest men of our times. That quote has served our family well through the years. It has become something of a mantra as we head into rough times. Each one in our family knows its meaning well. When I sat with my dad as he passed away I would silently say it to myself. As Carter wheels into the operating room he repeats it to himself. and I want to pass it on to you. Because I have so many brave friends, doing things even though they are scared. Bravery shows itself in women in awe inspiring ways. From the 82 year old mother who leaves her long time home to spend the later part of her life near family, giving up all that is familiar and comfortable. To the mother who is both fighting an incurable illness yet still bravely planning for the day it will probably win. Shining examples of bravery surround us. We recognize its tell-tale signs when we see it in ...
Would Someone Please Stop the Merry-Go-Round?
This post is one of those that comes into my heart and has to be published. It's messy and raw and real. I have these moments where I just need to write. I am having a moment now so please indulge me by not caring about the way it comes out. Would Someone Please Stop the Merry-Go-Round? Really. I am tired. and dizzy. and I just don't know how many turns I can take at this. The ups and downs and the constant round and round. Never really getting anywhere. No finish line to reach. When your kids are little and they have a special challenge like spina bifida you have so many people there cheering you on. Cheerleaders do it out of love for you, your child, and a tiny hope that they are right. They say, "keep going" "you are in the hard years" "it will get better". Theoretically, they are lying. I don't think it is even a lie they are aware of. I have told it so many times myself. Somethings DO get better, but mostly you just get stronger. You transform from the crumbled mess you were on the day you heard your child's horrific diagnoses. You become harder to beat down. You readjust your vision of 'normal'. It's who we are as humans, as mothers and fathers. We ...