I’m pretty certain day lights savings time was created purely to inconvenience parents. It throws the household off for a week. In my current sleep deprived state, I can’t image what benefits this time change offers that can outweigh the added stress in every home affected with small children. At least the kids are cute.
Our house came with a blue eyesore of a bathroom. It wasn’t a big deal until we realized the plaster behind the tiles in the shower was a soggy, crumbling mess. My husband took down all the tiling and installed new shower worthy backer board. And then it sat in that state for ages. Eventually, I decided to quit postponing the repair and hired Jon from Claus Custom Carpentry and Home Improvements to renovate the bathroom. He installed new tiling, replaced trim, and painted the tub and walls. The room is a totally new space that stands up perfectly to use.
It’s funny, really, how such seemingly small things can have huge impacts. In fall of 2009 I was a second classman at a federal service academy preparing to spend the next six months working within the maritime industry. Then one day I brok out in a few hives. I never would have imagined that this insignificant, yet new, occurance would completely change my life.
Those hives disappeared. But then they came back, again and again all over my body. There is no rhyme or reason. Allergists all dismiss the condition out of hand. “They’ll go away on their own” they say. It’s not taken seriously until you’ve lived a miserable existence continually plagued by hot swollen patches for at least six weeks. Once you’ve passed that check point there aren’t actually any solutions to the problem. They’ll tell you it’s probably autoimmune, but autoimmune testing isn’t expansive or precise enough to be sure. It is seven years later and my hives and I have learned to coexist.
Back on topic, one day I broke out in hives, and the next 3 months were a whirlwind of classes, obligations, time in the campus medical center, and shuffling to appointments with various specialists as the campus clinic tried to figure out what the problem was. Finally an allergist determined it was chronic idiopathic urticaria and angioedema, meaning I have chronic hives and swelling for no known reason. Great! I had a kind of sort of answer. Now I could continue on with my well planned out life. Or so I thought.
Evidently that little word at the end, angioedema meant that everything needed to change. The swelling that accompanies my hives could potentially cause too much swelling in my throat, leading to anaphylactic shock (such as with severe allergic reactions). It hasn’t in the seven years I’ve had them. But the potential is there. Because of this possibility, it was deemed unsafe for me to work at sea or to serve in the military. Both of these were requirements for my education.
And just like that I was thrown off course and sent in a new uncertain direction. These hives can make me miserable and leave me in a general state of discomfort on the regular basis. Yet at the same time I must thank them for everything I’ve now built around me. Without them, I’d never had changed schools, never have had kids so early into adulthood, never had been given the opportunity to stay home with said children, and never have found the communities of friends I so cherish now.
Thank you, you miserable hives, for all the pain and wonder you’ve brought to my life. Without you retched things I wouldn’t be where I am today. Nor would I be the person you’ve forced me to become. So thank you. Now please bugger off and never come back again.
For more information: What Is Chronic Idiopathic Urticaria (Hives)?
One of the harder facets to being married to a merchant mariner is the frequent and abrupt changes in day to day life. Anyone who’s dealt with a partner leaving for extended travel understands how life sort of stops before and after as you dedicate all free time to making moments before they leave and once they return home. Plus once they are back home, you must readjust the household to be a joint venture rather than a distance one. Now take that practice and repeat it every 4-6 months for years. It’s difficult to imagine. It is also our life.
We are very lucky that Casey has found a ship he loves working on with coworkers he enjoys. Before this ship, our schedule was more turbulent. Casey works 7 days a week and 8 hours minimum each day. It’s a lot and can be wearing. He also spends half the year out at sea, a quarter to a third in the shipyard, and the remainder on leave.
The upside to this is he gets 2 months off for every 4+ consecutive months he works. They’re completely off 24 hours a day for 60 days. I adore my husband, absolutely head over heels, but man that is a lot of one on one time. The first few weeks are wonderful, catching up and experiencing that “post deployment bliss”. Then it gets tiring. I want to spend as much time together as I can because as soon as he leaves, he’s gone again. But at the same time I miss the independent life I have when he’s not home. I neglect my friends and hardly see them as frequently as I usually do. And I hold off on activities in order to make them family events, reducing my usual spontaneity. It’s also why blogging falls by the wayside.
We are several years in and still working to find balance for out ever shifting lives. Currently, Casey is newly home from a month at sea and is working long shifts preparing the ship for a repair period. Soon it will become our normal, and then our normal will change again with the next adventure. Luckily we are well practiced in the art of hellos and goodbyes.
Loss can conjure up an array of emotions: sadness, emptiness, peace, love, fear, loneliness, and more. My family and many others recently said goodbye to a beautiful soul. Miss Kitty was a remarkable woman who had a way of touching the lives of every person she met. I’ve only known Kitty these past 8 years, which is nothing to the near 90 she spent earthside, and I will always treasure the time I was gifted with her.
It is saddening to realize the girls will not grow up experiencing the peace and joy that is synonymous with time spent with their great grandmother. Thankfully she passed on many of her best traits to Kitten, her daughter and my mother in law: how to engage each moment, to give some of yourself to those in need, and to leave those you know feeling cherished. I hope Kitty is enjoying her next great adventure. She will be missed.
A year ago today I sat in a parking lot after a meet up and started drafting a post for tumblr. It was about how babywearing helps me to survive. I never published this post, nor did I finish it. Half way through writing it I broke down in tears. It wasn’t Turing out as I expected it to. Instead I could only focus on how awfully difficult life felt parenting two kids all day long. A year ago today I realized I needed help.
That following week, I made an appointment with a therapist and started to actively work at becoming myself again. Until this point I was just going through the motions and barely hanging on. Postpartum was not as easy the second time around. Anxiety and depression snuck up on me through the year after A’s birth. I didn’t acknowledge it till she was 13 months old.
No one tells you to watch for post partum depression much after the first few month. You figure if it’s going to happen that it will be obvious and earlier. That’s not always true. It’s probably not even mostly true. A psychologist referred to my changed mood as adjustment disorder. That’s probably accurate.
If you feel down, or even just indifferent, talk to someone. As I’ve described it before, sometimes you just stop caring and have a harder time finding patience. Not everyone will feel strong negative emotions. If you feel off, speak up. You don’t have to deal with life alone.
Autism Speaks, the largest and most well known autism resource, has always been terribly problematic. Their mission statement speaks of hardship for caregivers and advocates for “curing” the world of the “global health crisis” that is autism. That is, until today.
This is their new shiny new mission statement:
“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”
This is a huge step forward, that is if they put their money where their mouth is. A mere 4% of the A$ budget is directed towards family services. Only 4% goes to actually helping the families and individuals they advertise as so helpless and dire.
How will the 35% of their research budget now be distributed? Will their fear mongering fundraising language change? Will they acknowledge the many voices of adult autistics and stop implying that neurodivergence only occurs in childhood? That once an autist reaches adulthood and can speak for themselves, they no longer matter in the discussion about autism?
Maybe A$ is finally listening to what the #actuallyautistic community has been saying for ages. They do have a new president, recently announced the passing of one of their founding members, and appointed two autistic board members for the first time last December. Maybe they will be better. Maybe not. Time will tell.
Until then, check out these sites for your autism resources instead.
Parenting Autistic Children with Love and Acceptance
And for more information on why Autism Speaks is problematic:
Why I am Against Autism Speaks (and you should be, too)
There are several other fantastic resources on this topic within that link.
Today we are celebrating the births of E and A. We will have friends over for sensory play and food. Prepping for company physically and mentally can be a draining, but worthwhile task. I will get my fill of fun and friends over a few hours and then probably not speak with anyone for a week while recharging. It will be a good time. As I prepare for this day, I can’t help but think about the amazing people who give me the reason to celebrate this day.
A is the baby of the family at not quite 2. She is a fireball of energy and sass. A is forever asserting her independence and proving to me that she can keep up with the big kids. When she isn’t climbing or telling other people how things will go, she is a cuddle bug and nurturer. She always has kind hands and kisses to make the day brighter.
E is our forever on the go princess. Newly 4, she continually masters challenges and grows exponentially each day. Learning new things lights up her eyes. E embodies stubborness and determination. She is not easily swayed and pushes the boundaries to achieve her goals. E doesn’t need speech to express herself. Her personality shines throughout her every action.
Lastly, and most importantly, is Casey. He is my love, partner, and greatest friend. Today actually marks 9 years as Facebook friends. Also some time this month marks the start of our romantic relationship 8 years ago. I could not have found a better person to share my life with. Casey loves and accepts me even when I infuriate him. He does everything he can and more for us, this life we’ve built, and the lives we’ve grown. Without Casey, we would not have the two tiny humans to celebrate. Without him, I would not be the person I am today or appreciate each day as I do.
Today, we have much to celebrate. Most importantly, I get to do it with three of the best people I’ve ever known. I get to love my family that is wonderful and strong. It is the best sort of day.