The Unwinding Chrysalis

I am getting to a good place with my project proposal. This is good, and hopefully, I do well, but it isn’t what I need to be working on right now. School has a tendancy to place it’s restrictions on the goals one has in thier head. But, here it is,  an updated version of my mind.

 

Design Challenge

Even with support groups families can feel disconnected to others who share their diagnosis, The Share & Care Network is in need of a system of resource organization that will enable new and existing families to easily access quality of life treatments, everyday care experience, and share personal stories while protecting their privacy.

 

Project Statement

Share & Care Cockayne Syndrome & Trichothiodystrophy Network is a non-profit that supports families of children diagnosed with Cockayne Syndrome, Trichothiodystrophy, and Xeroderma Pigmentosum-Cockayne Syndrome. The group as a whole helps parents adjust to their child’s new diagnosis, organizes annual conferences, stays in contact with doctors to share information on new treatments and studies, keeps us in contact with each other, amongst other things such as sibling support and empathy in grief.

My goal with The Unwinding Chrysalis is to become another level of support and contact for these families. First, it will offer a more direct line of support for families just getting their diagnosis, having something tangible to hold will help them feel less disconnected in this new world. The Unwinding Chrysalis uses the stages of grief to help educate about Cockayne Syndrome, Trichothiodystrophy and Xeroderma Pigmentosum-Cockayne Syndrome while acknowledging the emotions that families new to the network may be experiencing and share stories from existing families. Included articles will be about challenges in care that we face as parents, choosing a wish organization for an affected child, what each of us can do to help the network as a whole, challenges in caring for our unaffected children, and ways that we can each deal with our grief in a positive and effective manner. To chronicle the known medical issues and care of an affected child I will also be designing the wireframe for an electronic book. This e-book will offer access to specific types of care pertinent to the disease, information on past studies, and expand on information from the articles in The Unwinding Chrysalis. Availability to both the magazine and e-book is a big factor for each family, whether new or not, therefore the e-book will be under the domain of Share & Care CS & TTD Network. However, The Unwinding Chrysalis will be maintained as a non-profit magazine for the annual review of current topics. For each new family, a current copy will be sent for free, but I hope to continue with an income-based price adjusted subscriptions.  

Within the scope of this project, I will be thinking about awareness and advocacy through infographics, printmaking, and vinyl stickers. The infographic is a deliverable meant to be accessible to the general population. It is my hope that it will help people understand what Cockayne Syndrome, Trichothiodystrophy and Xeroderma Pigmentosum-Cockayne Syndrome are and see why we need help with research and funding. Vinyl stickers will be handed out with the magazine, these stickers will reflect images from the infographic and can be displayed anywhere that vinyl exists currently. The prints will be available as a fundraiser, in the scope of this project the profits will go to Share & Care CS & TTD Network.

Last Summer Break! Senior Year! Cont’

Finding the right school took time and patience. You would think that because they had the program right there I would just hop on over to registration and get the ball rolling so to speak. But no, in real life this is NOT how it happens. First came a serious talk with my husband.

Now talking to my husband about stuff like this is easy, sometimes. I was worried that he would insist that I stay at my job a little longer. A job that I was very unhappy at. (Now don’t get me wrong I know that some people love being a cashier, and some just stick with what they have because they have no other choice. I was lucky, I didn’t desperately need my job I just needed to find money for tuition and this is where I thought it would get sticky.) Of course, my husband, the one who decides to surprise me, had no issue with it. See how I get worked up for no reason what so ever. I was a little tight at first, but once financial aid kicked in, about four months later, it was me learning the new ropes that I hadn’t swung on for about two decades.

And oi, did I feel old. (and I still do, but for a different reason)

 

Last Summer Break! Senior Year!

Now that I have a little over five weeks until classes start back up I think I need to spend a little time reflecting on my education, time off, and goals going forward.

It’s been difficult, to say the least, to get the right words out. These are the words that I want to share with people. I want to help others who, like me, are later bloomers or just want a change and just don’t know how to get the fire started. Believe me, it wasn’t easy! Part of my issue was that I didn’t think I could handle school again. I wasn’t the best, or even average, college student. Looking back, I know that is was because I didn’t really explore more in high school. I thought I knew what I wanted. After two years and four major changes, it is enough to know that I stopped. I think it is a little better to disappoint your parents than to waste four to five years of college tuition and end with no degree.

After marriage, having four kids, losing one kid, 13 years as an air force spouse, a very sudden discharge, and a final move across the country, we were in a place that I could start looking into my personal discovery.

I started by finding work. That is usually what one does when a spouse is unemployed. He was looking too, so it’s not like he was just being lazy, it just takes time to find a job in a career field that you have no experience in, just raw talent.

Apparently, my talent was running a cash register. Not that being a cashier is a bad thing, quite the opposite really, I think everyone should have at least one job being behind the cash register. However, I knew that it wasn’t a long-term gig for me. I really don’t like working with money, I like having it, spending it, but balancing the household budget and cashiering are different monsters, and I spent too much time worrying that I would give improper change, or even just tell the customer the wrong number. (I am slightly dyslexic when it comes to numbers and they get jumbled in my head.)

Jumping forward about a year.

My turning point was a field trip I chaperoned with my then 13 years-old twins. Now, I knew that I wanted to go back to school, I had tried to before a couple times but it never felt quite right, either timing or money was always a hindrance. Getting kids to think about their futures we toured the facility of Clover Park Technical College, a local community college that does have a lot to offer their students. We were sitting in a little group listen to one of the instructors talk about their program and I fell in love. Not with the instructor, but what he was talking about. I can’t remember what he was saying exactly, but he talked about paper, printing, figuring out how to print on paper to make books, images, color, type. All these things that I loved to create with and my brain just whirled with excitement. I knew then that this is what I wanted to study and do. Design was my new goal in life.

Recipe: Mom Chicken

Serves: 4+, depends on how many pieces you make or how much you need.

Cook time: 20 – 40 minutes,

For a standard, adding to a casserole or using shredded chicken I will make four pieces. If making as a meat course for the entire family I make 1 per person, in my family this is five.

Ingredients:

  • 4 frozen boneless skinless chicken breasts
  • 2 Tablespoons olive oil (more if you need two pans)
  • Salt
  • Pepper
  • Garlic powder
  • Onion Powder
  • Chili Powder (optional)

In a large skillet with a lid, heat olive oil over medium heat. Add chicken breasts, I add these frozen but you can add them thawed as well. Sprinkle salt, pepper, garlic powder, onion powder, and chili powder. Place lid on pan and cook for 5 to 10 minutes or until chicken starts to brown. Flip the chicken breasts and season the cooked side. Keep an eye as the other side cooks and add enough water to cover the bottom of the pan when it starts to look like it may start to burn. After browning the outside of the chicken the steam from the water will help cook the inside. At this point I continue to flip the chicken until the chicken is fully cooked. I cut mine in half, but a meat thermometer would work too.

*Disclaimer. I will add caloric information as soon as I figure out how to calculate it.

My serving suggestions:

I serve with a side of veggies and buttered seasoned pasta. Alternatives are with a slice of provolone cheese and avocado, Shredded for tacos or Rachael Ray’s Taco Pasta Toss, or chopped chilled and added to a salad.