Friday, August 18, 2017

Thoughts on Selective Abortion


I apologize for being MIA around here, but between figuring out a new routine, an extra load on my shoulders and not being able to keep my eyes off the news this week I have felt completely spent. From the events in Charlottesville, to President Trump's comments, to the terror attack in Spain yesterday and also the widespread news report about Iceland’s “eradication” of people with Down Syndrome this has been one of those weeks where my head was swirling with thoughts, feelings and information and it was hard to do much else except process. I feel like I have something to say about all of the above, but when it comes to Charlottsville, White Supremacists, and Donald Trump I don't think I can say it better than it has already been said. (Here, here and here.)

However, I did want to take a moment to talk about Iceland and their "eradication" of people with Down Syndrome. I had actually read this a while ago (mentioned in this post here) but I guess CBS news report really hit a nerve this week and certainly within the special needs communities I've seen a lot of talk about it all. 

Let's be clear, when Iceland talks about "eradicating" Down syndrome, what they mean is through the magic of prenatal testing and selective abortion woman are choosing not to have a child born with Down syndrome. You know for reasons like “quality of life” and so that a child and their family don't suffer. Of course this type of selective abortion isn't limited to babies with down syndrome, this is a common occurrence for babies with a wide array of disabilities. I even once had someone message me on Instagram about aborting their baby with limb differences. You can read my response here

But here's the thing, you might be surprised to know that I’m not entirely against selective abortion. I mean if we could reduce human suffering and improve our overall quality of life, I think that actually sounds pretty good. I just think we’re focusing on the wrong group of people. 

I think that the medical community needs to focus it’s efforts on locating and isolating the asshole gene.

Of course a fully grown, mature adult asshole is usually easy to spot. They are the ones marching in the KKK rallies, sexually assaulting women, abusing our children, they deal in human trafficking, they lie, cheat and steal, and sometimes they even use their wealth and power to ravage our planet and exploit the poor. Unfortunately by the time the asshole has reached reached full maturity it’s too late. They have already caused a lot of human suffering. So we really have to focus our efforts on spotting the fetal assholes. (Not to be confused with finding the fetus’ asshole—we can already do that!) Frankly, I just don’t know when we’re going to get there. If ever.

And to be honest, I’m still not entirely comfortable with aborting a human life even if we were to detect such a serious malady as assholeishness. They are still human after all. But at the very least we should incorporate an early intervention program for children who may be suspected of carrying the asshole gene. As we all know, in many areas of life early intervention is key. And I really do believe there is hope for these possible future assholes and I believe these individuals and families need support. We need to make a safe space for parents who may think their child is being an asshole. Just imagine a mom being able to call her pediatrician with the following plea: “Hi doctor? Yes I’m calling because I’m concerned about Billy. He’s been lifting up the girls’ skirts at recess and bullying the smallest kid in his class… I think I may have (voice cracking a little) an asshole for a child.” (breaks into full on weeping.) We may not be able to screen babies for the asshole gene, but if we can’t prevent it, early intervention and asshole therapy is the next best option. 

I know the world is still frightened or at the least very uncomfortable with people who have disabilities like Down syndrome, limb differences, autism and a host of other physical and cognitive delays, but the weird thing is I’ve never seen a terror attack, a corrupt business, a white supremacist leader, nuclear war or any other major disastrous news headline spearheaded by someone from the disability community . (Not saying it’s not possible.) In contrast, I always spot a person who clearly is an asshole gene carrier involved in these terrible tragedies that cause real human suffering

Trying to eradicate people with Down syndrome, a group of people known in general for their love of life, happy dispositions and giving hugs? I don’t know guys… I just don’t think they’re the problem.

I hope this little piece of satire gave you something to think about. Every human being is a gamble and we love them anyways. If you have strong feelings about White Supremacists marching, please consider that killing people with disabilities was Hitler's first plan of mass murder. I love what this Warrior Mama (and special needs spotlight participant) had to say about speaking out about this humanitarian crisis. I also realize it is not this clear cut. I know that special needs families need support in the form of medical services, therapy, night care, live-in care facilities and much, much more. The oft repeated phrase "It takes a village" is never more applicable than when raising a child with special needs. And in my life and in the life of most special needs families a large chunk of that support comes from government funded programs and the access to health insurance. Anyway,  food for thought guys. Have a great weekend. 

Friday, August 11, 2017

Happy Weekend

Is it just me or did this summer go by faster than ever? Our girls start school on Monday! What? We were in Gatlinburg, TN last week (the photo above is the view from our cabin) where we had a great time at Dollywood, hiking and relaxing at the cabin. We came home on Monday to a basement full of crap. Literally! (I'm laughing now, but it definitely wasn't funny.) Our sewer pipe was clogged and therefore backed up in our basement... um, it was bad. Luckily our basement is concrete with no carpet, or drywall but it was still a very unpleasant experience. We had a professional restoration cleaning service come out ($ cha-ching!) to clean up and properly sanitize the place. At the same time we have been trying to unload from vacation mode and get ready for school. The blog has been a little neglected lately, but priorities guys. Hopefully we're about to get back into a routine. (Although it's a new routine...I'll talk more about that soon.)

Did you guys catch the Bachelorette this week? It seems like Rachel was one of the most beloved bachelorettes ever and her choice Bryan was not. While I was genuinely confused watching the live finale (Why are they bringing Peter out now? Does that mean it's really over?) and was also rooting for Peter (sorta--I didn't like his wishy-washy ways) but I also felt really bad at the backlash the new couple is facing. First she had to defend Brian to her family and now it seems to the whole world. Not an easy way to start a relationship. Thoughts?

Lastly, I would LOVE some more spotlights coming my way, so if you are a special needs family or an individual with a disability--or know someone who is--and would love to share your story please email me at thislittlemiggy at gmail dot com. Spread the word!


Here are some fun links!


Auto mechanics recreate Renaissance paintings. Humorous and lovely at the same time.


Have you been following the Taylor Swift trial? I thought this article made a great point.


Just bought these shoes for fall--I've been wanting them for a couple years now. Hope they fit!


Stories about disability don't have to be sad.


Like Tinder, for moms.  (Have you tried it? I'm sorta curious...)


My go-to salad these days. (I've had a lot of people ask for the recipe.) 


Wow.


I hope you have a great weekend.

XO,
Miggy

Tuesday, August 08, 2017

Make || Jess Brown Style Rag Doll Tutorial

This Little Miggy || Rag Doll Tutorial
I'm sure you're all familiar with the beautiful and iconic Jess Brown dolls. I first learned about them through one of our favorite children's books Kiki and Coco in Paris. I wanted one of those dolls! These dolls are gorgeous. However, at $198-$240 a doll they are not cheap. And I don't think they should be! They are a high quality, hand made product and I'm glad people see the value in them. But for me, with three girls I couldn't justify the cost of getting one for each girl. Additionally, I believe in handmade gifts, especially if those gifts can become heirlooms. I made two of these dolls for my youngest girls a couple Christmases ago and this last week PSP and I finally made one for her. I hope they will always treasure the dolls I made for them and I hope PSP has good memories of making her doll together.

Jess Brown herself encourages people to make their own rag dolls and has a pattern in her book, The Making of a Doll, so you can make your own. However, this is my own simplified pattern and it differs from the Jess Brown dolls, but the results are similar and they are super easy to make. Promise. Of course you could always get Jess Brown's book and use her patter, but I'm going to show you my version, including making your own very easy doll pattern. If you are already a sewer and have lots of fabric and scraps around you can easily make a doll or two in an afternoon.

Lets get started!
Supplies:
This Little Miggy || Rag Doll Tutorial
1. pattern--I use paper grocery bags to make my patterns so they hold up to repeated use
2. muslin, linen or cotton fabric in your choice of skin color
3. wool felt (just a tiny bit will do!)
4. Embroidery floss
5. felted wool (I get mine from old cashmere sweaters that have gotten holes in them)
6. fabric--vintage fabric is especially great for the dresses and pants
7. batting
8. typical sewing supplies--scissors, pins, thread, needle, sewing machine, etc.

Friday, August 04, 2017

Special Needs Spotlight || Marian

Hello! I am so happy to share our family’s story. We are a family of four living in a Los Angeles suburb (it’s an out there suburb). Our oldest Emily is four and Marian is almost two. In February of this year Marian was diagnosed with the early stages of a fatal and progressive genetic condition called Niemann Pick Type C. Without help she probably won’t live to be more than five or six. Our world shattered but we quickly were able to find hope in a very promising experimental treatment...in Chicago. We went back and forth every other week for three months and now happily get the treatments in Los Angeles. When Marian was diagnosed at 18 months she couldn’t walk a single step. Today, after four months of treatment she can walk across the room. We’re doing all we can to raise awareness for her condition and are sharing her journey on Facebook (Hope For Marian) and hopeformarian.com if you’d like to follow along - we hope that you will. She’s small but mighty and pretty cute, too!

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Miggy: Hi Sara and welcome. I'm am so glad you reached out to share your family's story and particularly your daughter Marian. Your daughter Marian has a very rare and life threatening disorder called Niemann-Pick Type C or NPC for short. What were the first signs and symptoms you saw in your daughter that told you something wasn't quite right? How long did it take you to get a diagnosis and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?


Sara: Thank you! When Marian was born she always seemed very delicate and small, but so full of love. I noticed right away that something was just a little off in very subtle ways but I couldn't put my finger on how to describe it. Her legs were very thin. She was very sleepy and almost never cried. She would spit up sometimes when eating, really massive amounts, out of nowhere. She wasn’t very strong and needed a lot of support. When she got to be six, seven months she wasn't even close to sitting up. But there were so many things Marian was doing "right" - her doctor wasn't too worried. The symptom that ended up ringing the alarm bells was an enlarged spleen which her neurologist found around a year old.

It took about seven months of constant appointments with specialists, dozens of blood draws, MRIs, ultrasounds, and an EMG to get the diagnosis. We saw three neurologists, a neurosurgeon, a geneticist, a neurodiagnostician, two GIs, two hematologists, and an infectious disease specialist in that time. It was really intense!

When we got the diagnosis it felt like all the air left the room. The most horrible feeling. We ended up getting the diagnosis through DNA whole exome sequencing. The doctor called on the phone with the results. I had been reading about NPC on my own and knew immediately NPC is fatal. NPC doesn't have a cure. I thought right away, she's going to die. How can my baby who is smiling, laughing and getting stronger in my arms going to slowly slip away, suffer and die. I cried and cried as did my husband.


Today I still feel terrified but I see a path for Marian to survive this, she’s started an investigational treatment that is helping her tremendously. While the reality of the diagnosis hangs over our heads all the time, we are also pushing back against it thanks to the efforts of others that paved the way before us. Throughout this entire process I’ve felt like we needed to gear up to face some serious challenges, but at the same time we would be able to and she would be ok. On most days I still feel that way, on the harder days it's - well a lot harder. Ultimately, I feel frightened and sad in many ways, but the biggest part of me feels happy, grateful, hopeful and motivated.

Tuesday, August 01, 2017

Going Grey?

At my last hair appointment I was bemoaning, once again, my grey hairs and how hard it was to keep on top of dyeing my roots. My hairdresser said, "You could just go grey." I shook my head and said while I have no problem looking my age (40) I feel like letting my hair go au natural would instantly add another 10 years. "I don't think so," he said. He then went on to say he's helped about 15 clients to go grey or salt and pepper and not one of them has gone back to dyeing their hair. (Also, it's worth noting that my hair dresser is a hip, rock n' roll kind of guy in his early 30's.) We kept talking and I realized that in my head I had a certain stereotype of a woman who lets her hair go grey--a sort of 80's, mother-earth type reminiscent of Stockard Channing's character from the movie Where the Heart Is. And not that there's anything wrong with that look! It's just not me. But the more we talked, the more I started realizing that maybe I could have grey hair and still look like me.

I was super intrigued and have been giving it serious thought ever since. In fact, I haven't dyed my hair since before that appointment and my roots are a good inch+ out right now and I'm not sure what I'm going to do! I thought I'd do a quick pro/con list about going grey and get your two cents as well. (And if you go to my IG account today I show my hair on my stories so you can get a good look.)
PRO's
Low Maintenance. This by far is the biggest pro. I'm so tired of dyeing my hair every 4-6 weeks and spraying my roots with a color spray in between touch ups. I would love not to worry about my hair color anymore!

Less Chemicals in my life. Admittedly this isn't a huge concern for me, but still...less unnecessary chemicals is never a bad thing right?

Healthier hair. Less hair dye and chemicals surely means healthier hair overall right? Again not a huge issue, but I'm sure it will help.

Grey is in! OK, so this one doesn't totally work as my grey (which will be very salt and peppery) will be quite a bit different from the 20 something crowd with glossy, evenly dyed shiny grey locks. Of course I could dye it grey to sort of help with the transition and the overall look and tone, but that would be completely besides the point! Either way a quick look around the web tells me there are a lot of women embracing grey at younger and younger ages.
CONS
Looking older. Even though my stylists says differently, I still think going grey will add about 10 years. Or perhaps it's just the stigma of looking less put together. I think that's part of the image I have in my head.

I'll miss my dark hair. I have always loving having really dark hair. When my blond friends in high school were using lemon juice and sun in to lighten their locks, I was making concoctions of coffee grounds and molasses (real recipe from Sassy magazine) as a natural way to darken my hair. Having dark hair has been one of my more distinguishing features as well over the years as people have often asked about my ethnicity (especially when I have a tan) and are frequently shocked when I tell them I'm Asian...CACasian. Ha! Even amonst my family, I have the darkest hair and I've always liked that.

My husband and kids. While my husband is supportive, my kids are less so. They want me to keep dying my hair! Ha! I think part of this is kids not liking to see their parents change so drastically and I  think they also don't like the idea of me "aging." And while my husband is supportive, I have a sneaking suspicion that deep down he really prefers my darker hair. ;)

I might not like it. It could take a while to get my hair totally grown out and natural and what if I get there and I don't like it? Of course I just dye it back, but it will feel a little silly to give it all this time to grow out, only to end up dying it dark again.

Outside perception. I don't usually care what other people think in reference to my overall style, but in this case as I've said above I don't want grey hair to make me look older and part of that is how other people perceive me. Also, are there certain assumptions that come from letting yourself go grey too young? Will it say I've given up? I don't care about "looking good?" I mean I really don't know, but I am curious to know what having grey hair could convey to other people and if it would be positive, negative or neutral.

I'd love to hear your thoughts! I know some people who have had some grey or even streaks of grey in their hair from a very young age--a girl I went to middle school with had grey streaks on both sides of her head. Another girl from college had a prominent white-ish blonde streak up front which I assumed she had bleached out--I found out later it was completely natural! A lot of my friends have been dyeing their hair since their 20's, I didn't start dying my hair until my mid or late 30's. So what are your thoughts? Are you someone who thinks hair dye is the greatest invention of all time like Oprah? Or do you believe in embracing your authentic, natural self. Salt and pepper hair and all? What do you think when you see young-ish women (under 50) with grey hair? Do you have certain stereotypes in your head about women with grey hair who aren't yet grandmothers? Also, if you dye your hair do you ever think about going grey? What holds you back? 

Images and accompanying article from RealSimple

Friday, July 28, 2017

Special Needs Spotlight || Eli

Hi! My name is Michelle. I'm married to Eric and I have 3 girls (2 teens and a tween) and a 3 year old boy named Eli who happens to have Down syndrome. Eli has been a fighter through several surgeries and he inspired me to start an apparel company for kids with special needs called Littlest Warrior.

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Miggy: Welcome Michelle! I'm so excited to be featuring you and your son Eli today. Let's start at the very beginning, can you take me back to the day you learned that Eli would have Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Michelle: When we first found out we were having a boy, our first boy after 3 girls, I was beyond excited! The life I painted for him flashed before my eyes. I saw him grow up, get married and have children of his own. Then came our 20 week ultrasound. The very first diagnosis we received was for his blocked intestines and his heart defect. The doctor didn’t give us much hope, so I was terrified. The doctor told us that the combination of the intestines blocked and heart defect possibly indicated a chromosomal abnormality, such as Trisomy 13. They said he could possibly be stillborn and if he did survive birth he would need to have open heart surgery right away. When we did finally receive the diagnosis of Trisomy 21 (Down syndrome) around 30 weeks, I felt relieved knowing that he had a far greater chance of surviving.

But there was still grief. I had to grieve the life I had already dreamed up in my mind for my first boy. I felt sorry for him, I felt sorry for my daughters, I felt sorry for my husband and myself. I thought our life was over. I thought it was all downhill. I had no idea what joy and adventure was waiting for us. Knowing what I now know, I so wish I could go back and give myself a glimpse of what our lives are like now. Yes, our lives are different, but so much better! There is so much more joy, and love and hope. We are stronger, better people because of Eli.


Miggy: I know that most every condition exists on a spectrum, can you talk to us a little about what Down syndrome looks like for Eli and how it affects your day-to-day life?

Michelle: After I had Eli, I promised myself that I wouldn’t compare him to typical children. What I didn’t prepare myself for was how much I would compare him to other kids with Down syndrome. Eli is 3 and just started walking. After his second birthday passed and all of his peers with Down syndrome were walking and he wasn’t, I realized how much it was bothering me. I quickly realized that every individual has their own strengths. Instead of focusing on what Eli couldn’t yet do, I started focusing on what he could do and it’s amazing how much peace that perspective shift brought.

As far as everyday life goes, Eli is Eli and he’s working on his own timeline. We accommodate based on his current needs. We are just passengers on this crazy, fun ride he’s taking us on :)

Miggy: What are the biggest worries you face for Eli? On the flip side, what are your hopes and dreams for him?

Michelle: The biggest worries I have for Eli are for his future after I’m gone, who will take care of him? My daughters have already started fighting over which one of them it is, but I still worry. My hopes and dreams for him are that he would truly be included. In school. In work. In life. I want him to be a bright light in a dark world and for our family, that dream has already come true.

Tuesday, July 25, 2017

Big Little Lies


*Major Spoilers Ahead*

I honestly didn't think I'd ever watch HBO's Big Little Lies. In addition to knowing the show contained graphic nudity and graphic sexual violence (two things I generally steer clear from in media) the show didn't particularly interest me from the promos. It looked like a catty, subversive murder/mystery that was about rich, suburban moms behaving badly. However, it seemed to be getting rave reviews.

Through VidAngel and their streaming service (a site that lets you edit nudity/sex/violence/language out of films and tv shows) I decided to give it a try, but still mainly expecting the show to be a guilty pleasure. I watched it in quick succession and then made my husband watch it with me just so I could watch it again. I loved it. It was interesting, well made, and so thought provoking. But I also couldn't put my finger on what exactly I loved right away, so I watched the end again and again until I could really figure out what it was that I loved about this show so much. I've basically been obsessed and I've been wanting to talk about it with everyone, so I thought I'd talk about it here! Again, MAJOR SPOILERS so if you haven't watched it, please go watch it! Get a free week trial of HBO through Amazon like I did, the sign up for VidAngel (or not) and get a  free 30 day trial with them and binge watch away! It's only 7 episode. Basically you have no excuses.

Now the juicy stuff.