Wednesday, May 27, 2015

A post I am guaranteed to regret by tomorrow morning

Note: when I'm in writing mode, I don't edit. So excuse any typos and such.

A few months ago, I came to grips with realizing that I had a problem with alcohol (we won’t use the “a” word, because that would attach an adjective to my very self and that’s scary. I told my immediate family and two other confidantes that I would be removing alcohol from my life. I met with a friend from church who is 7 years sober and is awesome, and I really thought I was on the path to greatness. Mmm-hmm.

I gave up alcohol for a while (almost a month) and it was wonderful and effing AWFUL all at the same time. I felt so sad. Ugh. And yet, the relief from the guilt of the cycle of alcohol was wonderful. Bob was so supportive of me and wanted to do whatever it would take. Problem is, I wasn’t sure myself. I convinced myself that I would be fine having an occasional drink here and there and that I could be a “normal” person who had a “normal” relationship with alcohol. Except, that’s not how my body works.

So tonight, I took my last sip of wine from my stemless glass (ever tried to knock one of those over? They just roll, it’s pretty sweet), and, and before swallowing it, I held it in my mouth. I’d already had enough wine to be drunk and not care about very much. So I held that last sip in my mouth and savored it. I tasted the burn of the alcohol in my mouth wanting to remember forever what it feels like. I knew as soon as I swallowed it that it would be my last. This relationship with alcohol IS NOT WORKING. I do not have balance. I am not in control. This is not what I want for my life.

Reluctantly, I swallowed that sip. I flipped over on my back as if entering into a meditative yoga pose and instead savored the feeling of being totally uninhibited, knowing that it wasn’t going to happen again. I’m sad. I love this feeling. I feel like I NEED this feeling to deal with every bump that comes down the road. I will miss the degree of not caring that comes with having enough alcohol in your system to dull your senses.

Look, I don’t want to be that person. I don’t want you to feel weird about having a drink around me or about talking about alcohol or posting memes from someecards about getting drunk. Please. I want anyone in my life to BE THEMSELVES. And that’s why I’m telling you. Telling you not because I want the accountability (because, let’s face it, now that I’m telling you, I’m up a creek should I choose to relapse) but because I want to be myself and be the best at that. I LIKE myself. I have a great husband and kids, wonderful friends, and a general positive self-image. I just feel emotions very intensely and alcohol sometimes helps that feel more manageable. I am not the first in my family to deal with this. Many of you know that I have bipolar disorder and my brain is just wired a certain way. I’ve already beat (ha! or maybe not?) an addiction to food and now I’m working on this. God didn’t make a mistake. God made me this way, someone who feels life intensely, and it’s up to me to figure out how best to represent that. Surprisingly, I’m not unhappy, I’ve just chosen a bad way of dealing with the stress in my life and the intensity with which I feel those feelings about it. Since my thyroidectomy last July, a lot has changed about how my body metabolizes everything, which includes alcohol. I’m not blaming anything on anything, but circumstances have changed, and this is the place where I find myself.

Some of you will read this and re-coil and judge. That’s fine, I get it. Follow the illuminated “EXIT” sign and proceed to the street. The rest of you will realize that this is not an emergency and will stay. You’re free to do as you wish. I don’t need “help,” per se, I just need love (don’t we all?). I need your prayers. And your friendship. And you not to be weird about it. We can talk about it. Unless you’re superhuman, you probably have something difficult to deal with as well. So you’re in good company. If you didn't see it coming, I'm sorry. I didn't either. Life happens! Hi, my name is Ali. We're all figuring this out, one day at a time. 

I SHARE THIS NOT FOR ATTENTION BUT TO PROMOTE COMMUNITY. I actually don’t want attention for it. I want you to share this with someone and say, “Look, _____, here’s someone going through what you’re going through. You’re not alone.” My name, Allison, means "truthful," and I just for the life of me cannot live without being truthful about this. You are awesome and wonderful and so am I. Let’s understand and love each other and move forward together. I love you. 

UPDATE: It's the next morning and I don't regret posting this. I mean, a feel a little silly, but I don't regret it. I do feel relieved, and I'm also humbled by the outpouring of love and support I've received through various forms of communication. :)

I also felt it necessary to add that while I can't guarantee that the boys haven't been affected by all this, I've worked really hard to keep things removed from them. I haven't had a scenario where I've been drunk while home alone with them or anything like that. I've fought many a day through the day with them only to fall apart while they're asleep. So I hope it's helpful to know that. Even still, I'm sure they will notice a change in me (even if they can't describe it) once I get a handle on this. Onward and upward.

Wednesday, October 2, 2013

OSS Richmond!

One SMALL Step Richmond has already raised $11,450 toward our goal of $30,000 for PWS research!! We are #27 in the world among 72 walks. Help us toward our goal! And if you register to walk with us on the 26th, all you have to do is raise $40 and you get an awesome OSS T-shirt.  It will be a great family event! Thank you to all those who have supported us thus far!
http://onesmallstep.fpwr.org/dw/users/deanmachine/Richmond2013


Monday, September 16, 2013

Guest promo - the roo pouch

I love supporting fellow PWS families and so wanted to 
pass along this opportunity to support Rebecca and her
 family! Read below...

Hello! My name is Rebecca - Mamma to Joey Paul (2 1/2), 
and Emil Franklin (6 months). My son Joey has PWS. Last 
month we moved from Delaware to Indiana because my PhD 
program in Philosophy. 

After working at the University of Delaware for five years I 
decided to capitalize on this new adventure and stay home
with my boys. For the last two years I have enjoyed exploring
various DIY projects, and making handmade gifts for friends 
and family. I've toyed with the idea of opening an Etsy shop 
for a while and I decided that there's no better time than the 
present! 

My shop, the roo pouch, has a handful of "washi canvases" 
with inspirational or motivational sayings. I would love to 
design a custom canvas with the saying of your choice. 

You can contact me through Etsy, or at rkrylow@gmail.com
to discuss the details. Creating something gives me the time
and space to be with myself, engage in self-reflection, and 
enjoy a few quiet moments - which as we mothers know, is 
essential!

I hope you enjoy my shop and my "handmade cheer to 
brighten the soul".

Joey Paul!


Saturday, September 14, 2013

Entering Ketoworld

DISCLAIMER: I am not a doctor and the following is NOT medical advice. Please consult with your child's physician(s) before making any changes in the direction of this diet. It is a medical diet and should be treated as such.

Those of you who follow DITW on Facebook probably saw an article I posted recently on the ketogenic ("keto") diet. It's explained well and in terms that most people can understand.
http://thispaleolifeblog.wordpress.com/2013/09/04/science-report-a-review-of-vlcketogenic-diets/


Since Dean was a baby, we have been careful about carbs in his diet, as I learned from another mom of a child with PWS (see pwsnotes.org) about how people with PWS don't seem to metabolize carbohydrates well for energy. As he has gotten older, we have reduced carbs even more and increased protein for Dean.

Recently, we decided to take the plunge and move toward the keto diet, or more realistically, the MAD (modified Atkins diet). This involves not only a considerable restriction in carbs (many are aiming for less than 20 grams of carbs per day - look at your nutrition labels and you'll realize how little that is!) and ALSO an effort to push fats. It's hard to train your brain to *add* fat to anyone's diet, so it's a big change in practices with food. I was initially quite reluctant to dive in (ironic given the name of this blog, right?), but I realized that if Dean can potentially run on 8 cylinders, he was maybe only running currently on 2, maybe 3. We know there is more in that little boy that can come out. It was worth a shot.

The keto/MAD diet is a *medical* diet and therefore needs to be followed by a doctor and/or a dietitian/nutritionist. There are some dangers and concerns that require monitoring. We will be meeting with a dietitian soon through our Children's Hospital of Richmond to make sure that we maximize results and get Dean all the micronutrients he needs. One of Dean's doctors is following the diet to make sure his growth and other factors (related to labs and medication) are not adversely affected.

The keto diet is most commonly used for people with epilepsy, as it can result in the improvement or even elimination of seizures. The article above explains that there are other conditions that can or can possibly be helped by the ketodiet. There is reason to believe that PWS is part of that.

What have we seen so far? We've been really mindful of this change in diet for a little over a week. There is a clarity in his eyes that we have not seen before. You can SEE Dean trapped in that little body, as I've said from the beginning that I know he is in there. His muscle tone has (oddly) improved a *lot*, his problem-solving skills are better, and he's talking a bit more. I know that the benefits will continue. Other PWS families who have had their loved one with PWS on the diet longer report everything from increased motor skills to cognitive improvements to being able to consume more calories while maintaining weight (all considerable concerns in PWS!). I took this picture after noticing the change in him:


This requires that we be really diligent about Dean's diet. We read labels even more closely now and it's amazing how carbs are in *everything.* We are testing Dean's blood ketone levels every or every other night. Last night, he was at 1.6, which is squarely in ketosis. We're aiming for even a bit higher.

Many of you know that I don't cook because I generally hate it. And planning ahead for food goes against my usual tendencies. But success with this diet requires both. Thankfully, Pinterest comes to the rescue! I have created a pin board called "Ketokid" that many are following. Check it out! http://www.pinterest.com/acfshenk/ketokid/


from http://chocolatecoveredkatie.com/2012/08/30/no-bake-coconut-crack-bars/

So that's where we are! We are feeling confident about this step and I will be sure to let you know the continued results!

Saturday, August 31, 2013

School is a-Comin'

The school year is three days away and while I'm sad, I also can't wait. Whereas last year I was nothing but reluctant to embrace the school year, this year's circumstances are a bit different. The boys thankfully adapted to the slow pace of our summer days, as daily plans to hit all the spots we didn't get to enough during the school year turned into free play in the house, long bounces on the trampoline, walks in the neighborhood, tons of time at the pool, and watching lots of (mostly Star Wars-related) movies. Yeah, we did go to the Children's Museum at times and various parks and such, but we let ourselves do it all at a relaxed pace. It was nice. Really nice. :) Cole had one (wonderful) week at Camp Hanover's Day Camp held at our church and the rhythm of getting him there and back reminded me of how busy the school year really is.


Definite highlights were our Florida trip, weekends to visit family in northern VA and Maryland, and Cole's birthday. It makes me smile to think of these memories. 

The last week or so, it feels like we're all unraveling. Our babysitter got a new job and so I'm been scrambling to fit in 30-40 hours of work a week around taking care of the kids (because I don't want to work while they're awake all the time, obviously), the boys have been not sleeping well and then are getting up around 5 am (or sometimes earlier!), and everyone seems to be craving more structure. So, although I'll miss the boys, I'm embracing the new school year. 

Cole is going into first grade, which is crazy, but, sigh... there it is. He expressed only once this summer that he wanted to go back to school, but other than that, he hasn't been too excited. We met his teacher yesterday and that seemed to alleviate some of his fears about what the next year might bring. We have worked some on reading this summer, but it's been quite reluctantly on Cole's part. I think he'll be happy to see his friends more regularly again, but I know the change of pace will also kick his butt for a bit until he gets reacclimated. Even though Kindergarten is no joke these days, 1st grade feels like "real school" for sure. My little Coley! I want to keep him small forever. 



Last year, Dean went to his special ed. Pre-K class three full days a week and to a regular church preschool two mornings a week. This year, he is going the full four days a week to his special ed. Pre-K class and then was going to go one morning a week to the church preschool. Just last week, we decided that he's going only to his special ed. class. He's (still) not potty trained, and although his other school said it was ok and they would figure it out, it still felt weird. The dealbreaker was when his new private SLP who we are seeing had literally only ONE opening the whole week, and that was during the day he'd go to this other school. It felt like a sign (if that reasoning doesn't make sense, I can explain the train of thought at another time :)). We know that Dean will be sad when he finds out he's not going to this other school, but he LOVES his other class and we visited his teacher this week. He is very excited. :) 

Of course, there's more to it than that for Dean, but I'm not sure how much I can wrap my head around right now. Our original thought in putting him at least part-time in a typical preschool last year was to expose him to age-appropriate models for speech and behavior. This year, while that still seems important, it's Dean's last year before Kindergarten (I'm going to skip over that thought for a minute...) and we want to make sure he's getting the full amount of support he can to improve his skills before then. And no, I have no clue what we're going to do for K for him. 



Emmett is not 2, but 2-and-a-half, as he will tell you. :) He is ready for preschool and is going two mornings a week to the same church preschool Dean attended! I can't believe my baby is going to school. I'm going to miss him, but I am eager for him to make friends his own age (instead of just hanging with the big boys :)) and to enjoy new activities that we don't do at home. I think he will do well separating from me at drop off, and I don't have any allergies or health situations to worry about with him, so that's a relief (dear God, please keep that going, I can't handle much more in that department...). Also, as of mid-August, Emmett is potty trained! Hallelujah! Still some accidents, but he is doing so well. It wasn't a requirement for his class, but I'm sure his teacher won't mind it. ;)



So what's up for me? I will actually have some hours here and there where ALL THREE of my boys are at school. I will most likely use the time to do work, but I might nap, too. :) I'm looking forward to having some time just with Emmett again, some time just with Dean on the morning Emmett is at school (when Dean was going to be at school in plan A), and then to have more reserves to greet my boys at pickup. I like that we are eliminating some of Dean's outpatient therapies and/or consolidating them to Wednesdays so that I won't have to spend more than one day a week waiting in a waiting room. This will be the first time in over 4 years that that has happened! 

That's it! That's the summer, and that's where we're headed for school this year. Praying for God's blessings for my kiddos and the kids/teachers/staff/etc. in your life....

Saturday, August 17, 2013

Happy Birthday, Coley!

Today, our Coley turns 6! It's been a very full six years, and we are so proud of him. :)

Dear God, thank you for Cole and how he made us a family. Thank you for his curiosity, his energy, his life, his humor, and his love for his family and friends. We pray that you would bless him richly and give him confidence and greater faith in you. He is a special treasure. Amen.








Friday, August 2, 2013

Jump, Jump Around

Today, we went with some friends and their kids to a new-ish place in Richmond called Jumpology. It's a trampoline arena, so you go inside the warehouse-type building and it's pretty much wall-to-wall trampolines. We had a blast! It was so funny to see adults alongside kids just bouncing all over the place. They were probably more dangerous than the kids! My legs were jello after just 10 minutes, but we kept bouncing and taking breaks and doing whatever it took to maximize our hour-long "flight time." Usually, we try to stay *at least* an hour when we do an activity with the kids, but an hour was sure a lot of bouncing!

Emmetty in the dodgeball arena. He looked like a little toy just bouncing up and down :)



Very funny, Jumpology, verrrrry funny....

The blur in the foreground is Cole, and the blur going up the wall trampoline is Dean (and I have to say, watching Dean run almost effortlessly up the trampoline wall was exciting!) :)

Bouncing with friends!

The boys especially loved the foam pit (no pictures, unfortunately), where you bounce off a trampoline into a pit filled with giant blocks of foam. Cole quickly figured out how to do a flip into the pit and Dean quickly figured out that he couldn't get out of the pit once he was in. Haha.

The staff at Jumpology take their jobs as referees seriously, but without being total killjoys. They blew the whistle at me for running between the foam pit and the main trampoline areas. Haha. But seeing how we've been to other places where there's a high risk for bodily trauma and the staff are less than vigilant, I was more than happy for them to ensure everyone's safety!

Just as an aside, Jumpology offers a lot of other events, including ones for adults and older kids. This was a specific jump time for kids 6 and under and their parents.

I can't tell you how many times people ask me how I handle three boys. First of all, they say it like it's a bad thing, but you all know how I love my little crew! The thing I say is just to run them whenever I can, and then they are happy! This is largely the case. Jumpology gets five Shenk thumbs up!