photo credit: see highlighted portion of photo.
photo credit: see highlighted portion of photo.
I have not done any lap swimming or water aerobics since December… until last night.
I have used a myriad of excuses to keep me from my beloved chlorine, but all of them could have been wrapped up in one simple excuse; I am so tired. Fatigue has been my most debilitating symptom of grief since my daughter died last year. The debilitating fatigue has mainly manifested itself by making it impossible for me to get dressed. (I’m sure there is some psychological meaning behind it, such as, “If I get dressed I have to face going into the world alone, without my ever-present sidekick.”) I have learned tricks I will share for other grieving mothers so you don’t have to figure this out on your own.
*When you finally sit up in bed in the morning, lift one foot to put through the leg hole of your underwear
*put your sock and shoe on at that time
*proceed to the other leg…(that way you only have to lift each foot once)
* wear skirts
*don’t forget your shirt as I did during one of the very early days back to work. Standing on the back porch with the strap of my tote bag crossed over my bra just didn’t feel quite right. It wasn’t until after I had locked the house and turned to go to the car that I realized what was amiss.
My dear co-workers know that I don’t have the ability to both shower and dress in the same morning, they have told me clothing isn’t optional and have put up with a non-showered me all year.
Tonight I swam laps. When I reached half the number of laps I would normally accomplish, I could no longer propel myself forward another inch. I stopped and spent the rest of my paid time doing water exercises. Last night I returned to water aerobics. Mid-way through the class, the instructor noticed I was struggling and proclaimed, “You need to come more.” I didn’t disagree. The chlorine smelled wonderful, the aches in my arms and belly suggested there might actually be muscles somewhere in my body, and my water friends are true. She is right. I need to come more.
I had to stop for gas on my home. I wished I was wearing a large sign that said, “Don’t judge.” My lovely water friends leave the locker room put together in fully appropriate attire, whereas I look like I just rolled out of bed and got hosed down on my way to Wal-mart.
~”When everything is moving and shifting, the only way to counteract chaos is stillness. When the surface is wavy, dive deeper for quieter waters.”
Several years ago a friend told me about a camp in California, where his daughter was working for the summer. He contacted me because he was excited to tell me that they devote an entire week to Prader Willi Syndrome. Knowing it was a pipe-dream to think I could get myself and Katie to California, I hit the internet instead. A year ago I found Wonderland, Wonderland Camp in Rocky Mount, Missouri. Week long camps for people with “special needs” are held throughout the summer, but one week is specifically for people with Prader-Willi Syndrome. I was so excited. I signed her up for camp and researched nearby resort options for me. My goal was to find an affordable room at a place with a decent pool. I made price the first priority and found a place with a decent price and pool, but realized that my room would be located above the resort bar and that the large resort had continuous activities planned, it sort of reminded me of a KOA campground only with buildings instead of campsites. I was looking for a much more peaceful, serene environment, like a state park campground; my main goal was to pamper myself, swim, and sleep. I found another place that looked like it would fit my requirements, when I spoke with the proprietor she confirmed that if I wanted a lot of activity I was looking at the wrong resort, I immediately booked my reservation. It was a wonderfully relaxing five days. I slept. I swam. I got rejuvenated. I vowed to do this every year.
This year I made Katie’s camp reservation and called my resort. They booked me in the same room and I sent my deposit. I started selling scarves, jewelry, and cards to provide the means of getting us to Missouri. We saved our Christmas and birthday monetary gifts and, with the help of family and friends, we scraped together enough to cover her week and mine.
For those of you new to our life, you need to know that PWS is a condition that requires diligent twenty-four hour supervision and monitoring of food, as people with it are constantly ….that means, ALWAYS and FOREVER hungry. This is why the camp has them come on a seperate week, so they can cater to the specific dietary restrictions that are necessary. This is also why….. I need a break!
One would think that with constantly dealing with what to eat when, that food would be the furthest thing from my mind when I am not with Katie. I thought that would be the case, and was surprised when I realized that it is so ingrained in my being that before the trip I thought, “Where are the grocery stores? What should be my menu for the week? What staples should I take with me?” I told myself to stop thinking about the food, it was going to be irrelevant for an entire week. I could eat whenever I chose. I could…..gracious sakes!!!…… skip a meal if I wanted! I could have breakfast at 4:30am (yeah, like that would ever happen!) and lunch at 2 pm without anyone noticing the time span. I could have a sandwich and call that a meal without adding cucumbers, tomatoes, peppers, onions, radishes, and every other conceivable vegetable known to man.
So, what do I do? I still think about food. My first blog post about my vacation could have described the serenity of no obligations, the peacefulness of no responsibilities, the wonder and majesty of a lake made by damning a couple of rivers……but, no. Staying true to myself, it is about food. Some of my food interest is not related to Katie, some of it comes from my ancestry of German farmers who still battle over who makes the best German Potato Salad at a picnic. The correct answer is, “mine”. It doesn’t matter who you are talking to, if they made German Potato Salad and you asked if they tried the others and whose was the best, the answer will be, “mine”. Just to clarify, I must tell you that mine is the best! As a young mother I canned fruits, tomatoes and homemade jams until PWS entered our lives and I didn’t know how to make those sugar-free. I think it is a benefit that I am passionate about food, cooking, and learning new things. That passion has helped make me adventurous in the kitchen so I could create interesting low calorie, low fat, low carb, high volume meals. The unfortunate part about my food passion is that I like to eat it all. I have a distinct memory of being told what Prader-Willi Syndrome was. In that moment I thought, ” it is such a bizarre condition that I doubt people will believe it is real when I tell them about it, they will think I made it up as an excuse for obesity”. At that time I weighed probably 140 pounds or less but decided then that I would not let myself gain weight, because I didn’t want people to think that Katie was obese because her mother is and it is simply our lifestyle choice. It grieves me that I was not diligent about that. There are far too many psychological theories that factor into my obesity for me to bore you with that line of thought, but I am glad that PWS is getting more awareness which makes me sound less of a looney tune and more legitimate than I sounded in her early years. My legitimacy is certainly not the main reason I am happy about the awareness, merely a by-product.
I dropped Katie and the twins off at camp, checked into my room and went grocery shopping, I went to two stores so that I could find the kind of coffee I was looking for. I stocked my fridge and have eaten without regard to a clock. What would be in your fridge if you could eat whatever you choose?
Yes, that is a lot of cheese, but it was a good sale, I can take it home. The margaritas are in there because I was anticipating a guest, I thoroughly enjoy margaritas, but the tequila puts me immediately to sleep…….or makes my clothes fall off…..or both!
I am greedy and have not shared my lovely meal, the critters are not happy with this turn of events.
Before me sat a cup of steaming Gevalia decaf with a touch of honey and cream; crunchy, seedy toast topped with Michelle‘s sweet red-raspberry jam; plump, chilly black grapes, and a piping hot omelette made with spinach, portobello mushrooms, vidalia onion, red pepper, bacon, ricotta and cheddar cheeses. I sat in my swimsuit and sarong, (because why would I wear anything other than that?) decided that I needed to scootch just a little bit in another direction to optimize my lake view…..scootching is NOT reccomended in plastic lawn chairs!! As I attempted this, two chair legs folded underneath and catapulted me off of the seat. Did you see “Identity Theif”? Remember the part where Melissa McCarthy gets hit by the car? She is hurled over the hood, against the windshield, onto the concrete and everyone thinks she is dead……yeah, that was me after being launched from the chair! I rolled, yes, actually rolled multiple times before landing sprawled on the deck with my sarong wrapped haphazardly around me. I untangled myself, gingerly arose to a sitting, then kneeling, then standing (only with the support of the nearby A/C unit) position. I hobbled over to pick up my upturned chair while thinking, “Oh, crud, I have to tell the proprietors that I broke their chair!”, as I upended it I realized it wasn’t broken, after all. I am currently seated in the wretched thing, the legs had merely folded under. My lumbar region is not happy about the incident, as I was already living on an injury from last week, but….on the bright side, the nearby squirrels were too busy chattering and giggling about my predicament to pilfer my food!
Inspirational Quotes To Motivate Your Life
Our adoption story
My journey as an adoptee who found her birth family.
Aspergers and the loss of my son
A small taste of life on the fringe of Prader-Willi Syndrome
To every thing there is a season ~
Making the obvious more obvious
Food Fun For Feeding Therapy and Picky Eaters
"Duchenning it" in my Twenties
What makes us different makes us great.
Just another WordPress.com site
a transparent peek into my journey... by Nicole Smith
Articulating a Rooted Life
Home of Gaydar Gone Wrong
Journalist & Multimedia Specialist
A Blog About Peyton Renee Snyder
The musings of a new mom learning to navigate marriage, parenthood, and the unexpected challenge of having a special needs child.
A Story about Love, Life & Prader-Willi Syndrome....
The Official blog of the Prader-Willi Syndrome Association (USA)
Life happens. You laugh about it or cry about it, sometimes both.
Choosing peace through beauty, nature, words.
Just another WordPress.com site
bits of taffy, about everything and yet nothing all at the same time!
Creating nutritious meals with the least amount of calories
Just another Special Needs Parenting site...
an attempt at authentic awareness
a mamma and her boys