Friday, January 19, 2018

Alaska Air + This Little Miggy Contest Winner

This Little Miggy || Fear to Love Contest winner
Thanks to Alaska Airlines for partnering with me this year on a discussion about fear, love and traveling as a special needs family. Thank you so much for supporting sponsors here on TLM, as it allows me to keep creating content I care about. 

This past October I announced a very special giveaway with Alaska Airlines where we would be giving away 4 free round trip vouchers to one amazing special needs family. The time has come to finally announce the GRAND PRIZE winner as well as the 4 runners-up winners.

First, a big, huge thank you to Alaska Airlines for sponsoring this post and this amazing giveaway. Traveling as a special needs family can be a daunting task. I'm so happy to know that Alaska Airlines cares about the special needs and disability communities. You can read about their special needs guidelines here, wheelchair assistance here and their involvement in the Wings for Autism program here.

Also a huge shout out to the following sponsors for providing such amazing gifts for our runners-up. A BIG thank you to:

The 4 runners-up will receive a Big City bundle from Tubby Todd, a Cashmere Poncho from Pepper Place Designs, a handmade shibori apron and cutting board from Live Free Creative Co and a gift certificate from Fawn Design good for one FD bag of their choice! You guys these are such wonderful gifts! You are going to love them.  

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Once again I want to say THANK YOU to everyone who sent an essay. It was an honor to read your stories. These were very personal essays about your lives and your loved ones and I don't for one second take that lightly. There is nothing left to say but thank you, thank you, thank you. 

Without further ado the Grand Prize Winner of 4 round trip vouchers to anywhere Alaska Airlines flies (excluding Cuba) is.....

Wednesday, January 17, 2018

Fear to Love: Semi-Finalists

This past October I announced a very special giveaway with Alaska Airlines where we would be giving away 4 free round trip vouchers to one amazing special needs family. Well the time has almost come to reveal the Grand Prize winner of the Alaska Airlines Fear to Love essay contest. In addition to a grand prize winner there will be 4 runners-up who will receive some amazing gifts from some of my favorite small brands.

But not yet...

You have no idea how hard it was to choose a winner. Each and every essay could have won. I'm not joking. Let me repeat, I AM NOT JOKING! You guys. They were all so good. I read every single entry that was sent in, twice. The first time just to read them and get a feel for them, and the second time to narrow down the field. I didn't even manage to narrow it down to half of the essays that first round! But I sent those remaining essays on to 4 more judges who each selected a handful of favorites, which eventually got us to our top 20, and then our top 10. I asked everyone who participated in the judging that if they knew someone--either in real life or had a significant online connection to them--to please not include them in their top choices, myself included. As I continued to read and re-read the essays that would make up our top 20, then top 10 and eventually the top 5 there were certain themes or phrases that would jump out at me as being especially profound or beautiful. So that's it. I went with my heart, as did the other judges.

Other than a word limit (give or take--I wasn't super strict) and the question "How have you conquered fear and landed in love?" there were no rigid judging parameters. Some essays were very well written with beautiful imagery and metaphors. Some essays were more straightforward and candid. Most essays focused on their children, but some were written about spouses or even themselves. A lot of essays made me cry, and a few made me laugh. Every single essay came straight from the heart. It was an honor and a privilege to read them.

Thank you to every single person who entered.

On Friday I will be posting the Grand Prize winning essay, as well as the 4 runners-up. But today, in no particular order, are the other 5 essays that made it into the top 10. You might want to grab a tissue or two.

Saturday, January 06, 2018

41

Well I'm 41 now, which means I know a lot. This is a picture of me standing and thinking about all the things I know. It helps when I use my hand to rest my chin. So now that I'm 41 and I know all the things, I thought I'd share some of the most important life lessons I've learned in... you know, life.

1. CHILL. This is not always easy because life is hard and mental health issues are real, but find a good therapist, maybe get on some meds, make your mental health a priority and just TAKE IT DOWN A NOTCH. I used to think mental health only affected a small amount of people all of the time, and a somewhat larger amount of people some of the time. Well I think that's bull honkey. I don't know anyone who has never had a cold, the flu, strep, or some sort of physical illness, therefore I think all of  us will have mental health issues at one point or another. And just like physical illness, some people are more suspectible and maybe deal with it more often, but we'll all deal with it at some point. Because one thing I've learned that is bad for your mental health is LIVING LIFE but I don't know a loophole to get around that. So get help. You'll thank yourself for doing so.

2. Sit down and relax. Related to mental health above, I realize I need to do a better job at separating productivity and being busy. Too often I find my laptop on my lap (Dammit! They planned it that way didn't they?) as a natural reflex, even when I'm not writing or actively working on something. The difficulty is so much more of modern life involves being online--looking up phone numbers, recipes, reading the news, even books--so it's not that it's all a complete waste of time. BUT I when I don't have a specific reason to reach for my computer or phone, and I reach for them anyway I find myself wasting plenty of time. Busy, but not productive. I've actually noticed I even have a harder time relaxing these days because I want to check my phone during a show or a movie--just a quick browse on FB or looking up to see what else that actor was in. This is a problem. I need to learn to step away and see the productivity in doing less. More quiet, more meditation, more reading, more naps, more time outside touching trees and breathing fresh air. Less is more. 

Wednesday, January 03, 2018

2017 in Review

We had a white Christmas for the first time in 7 years, we had family in town for New Years, and it is currently -2 degrees out and we are hunkering down being as cozy as possible. (Other than the fact that my oldest two have theatre camp this week and I'm sorta regretting the fact that I will have to leave the house twice a day for the next 3 days, but they love it.)

It's been quiet around here and will likely be quiet for another week or so. I would love to say I've got big plans for this blog in 2018, but it's more like I've got plans to have big plans. Goal setting is a slow process for me. It's not something I do on a consistent basis partly because it takes me so long to really figure out what I want. So I think my first goal should be to take me time and really figure out where I want to direct my energy this year as far as the blog is concerned. (I recently read Essentialism and it has really spoken to me. I highly recommend it.)

As 2017 ends and 2018 begins I wanted to take a few minutes and talk about this past year and what it's meant to me and how it's affected me.

2017 was a strange year, at times feeling like an out of body experience as I watched helplessly from afar (my computer screen) as tragedy after tragedy unfolded, knowing there was little I could do to help.  For the most part, my family and I are doing well, but I have never experienced a year where my heart hurt so deeply and so frequently for my fellow human beings. And for me, this year of sorrow started with the election.

I never wrote about how devastating the election was for me last year, but it was devastating. I have never felt a political loss like that. My heart ached and my stomach hurt and I found myself crying and feeling drained of hope.  I was raw and angry. On my personal FB page I became a viper striking back at every comment and defense of Trump--especially those defending Trump's disability imitations--it just became too much. I had always planned to write a post on my blog, but I talked about it so much in real life, that when it came time to write about it couldn't. I was drained.

So here are my short, unfiltered thoughts about the election, Trump and current events from this past year.

First, I have NO DESIRE to debate my feelings regarding the man who is our President. I understand some people are very pleased with the job he is doing. I am not one of those people. I am appalled weekly at his shameless lies and lack of basic, human decency. This has and will never be about party politics for me. As an independent I have voted Republican and Democrat almost equally in my life. I have respect and appreciation for the best virtues of both political parties, and I have criticisms for each party's shortcomings as well. I am not against Republicans, but I am and will always be against base ugliness masquerading as leadership, blatant and frequent lying, a president who attacks core values of our democracy like freedom of the press, the election of a serial sexual abuser, and a leader who divides instead of unifies. I will never be OK with the fact Donald Trump was voted into office. Therefore, January 2017, when he was sworn into office, started things off on a pretty tough note for me.

There were two shining beacons of hope in January however, that definitely helped ease the blow. The first was my 40th birthday. It was the birthday to end all birthdays as my husband flew three of my best friends out to surprise me for the weekend and we had an amazing time. He also made a book for me that people contributed to from all different era's (if you will) of my life and it is a treasure. That weekend might go down as the time I felt the most loved in my life. It was a mic drop birthday.

The other bright spot was the Women's March. I went with my oldest daughter and it is a fantastic memory and I'm proud to have marched side by side with my girl. It was also the first march I ever been a part of! I was a little nervous--especially bringing my daughter--but it was amazing. It was peaceful, powerful, and unifying. I'm so glad we participated

However, from there, things unraveled fast: there was the travel ban on Muslims, the president's constant, petty Twitter attacks, the firing of Comey, the riots in Charlottsville, the president defending white supremacists, the Las Vegas shooting, possible nuclear war, the hurricanes in Houston, Georgia and Puerto Rico, the fires in California, the Harvey Weinstein sexual assault allegations and the flood gates of the #metoo movement and the tumbling of powerful men in business and media. 

The last one--the sexual assault allegations and the reckoning that is still unfolding--that has been one of the highs for me of this past year. Of course not a high in the sense that I enjoy hearing about the widespread pain and suffering of women, or seeing men I once thought decent human beings to be exposed as actual scumbags. But I DO enjoy seeing the truth exposed and justice being (somewhat) doled out. The sexism and sexual assault isn't new, but powerful men starting to face actual consequences over their actions? That is pretty damn new and for me one of the best things to happen this past year. We have got a long way to go, but this has been a satisfying beginning to dismantling a systemic, global humanity crisis.

Exhale. While I didn't address any of those issues in detail, it felt good to get a little of that off my chest here. As I said, I'm not writing this to debate, rather I just want to make my stance known on these issues.


But as I said, 2017 was a good year for us personally and for my little blog. Here are some of the highlights from this past year.

As already stated, my 40th Birthday Surprise. A weekend for the books.

A last minute visit to my grandma last January that was both memorable and cathartic.

A feature on Design*Sponge. (Feature here.)

Disney Cruise with some of our besties.

Probably my favorite post I wrote this year.

My husband's and my first trip to Paris! 

A trip to Hogwarts with my oldest.

An epic Moana Halloween Costume.

Bought our dream house! (that is taking a l.o.n.g. time to complete. Sigh.)

Hosted (and almost ready for the reveal!) an amazing giveaway with Alaska Airlines!

And of course a lot of fantastic special needs spotlights, which are always at the heart of this little blog. It's also the series that made a disability advocate out of me. And for that, I'll always be grateful.

I have got some excited things planned for the year ahead--I know I just said I don't have "big plans" but I've had some things in the works for a while and I can't wait to tell you all about it. Thanks for sticking around and supporting this little blog for all these years.

XO,
Miggy

Friday, December 22, 2017

Spotlight Revisited || Kara + Adam


Hi guys! When I don't have a current spotlight I like to repost one from the archives. This spotlight features a couple who both have Osteogenesis Imperfecta, sometimes known as brittle bone disease. This spotlight was one of the first ones to really shape my thinking of disability as a social issue and civil rights cause.Also, if you love This Little Miggy and the work I do here, including the Special Needs Spotlight series, it would mean a lot to me if you would take a minute and like my FB page and Follow me on Instagram. And of course sharing these posts is always appreciated and one of the best ways you can support me. Enjoy! 

I’m so excited and honored to be featured on your blog, Miggy. I loved the spotlight on Lily, the little girl with Osteogenesis Imperfecta, and thought it might be fun to share a bit with readers about what it’s like to be an adult (or in our case TWO adults) with OI. My husband and I have OI and we have a 3-year-old daughter, Hannah, who is typical. We’re in the process of adopting a 6-year-old from China who has achondroplasia (the most common form of dwarfism). When not filling out adoption paperwork, we’re shuffling Hannah to school, swimming, or gymnastics. I’m a professor and Advocacy Coordinator for UC UCEDD and Adam is a recreational therapist. He directs sports programs for kids and adults with disabilities. Thanks again for offering us the opportunity to tell our story. We hope you and your readers enjoy it!

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Miggy: Kara, thank you so much for participating in today's spotlight. You have a different perspective as you and your husband have special needs in the form of Osteogenesis Imperfecta, and while you have a biological daughter who is typical, you are about to adopt a son from China who was born with dwarfism. Amazing! First, lets talk about you and your husband--growing up, how was your day-to-day life affected by your condition?

Kara: Adam and my day-to-day life was affected somewhat differently by OI. We were both small for our ages by the time we started school and we both had multiple surgeries and fractures. Adam walked with braces until around 5th grade when he had a pretty intense bike wreck that ended those walking days. At that point though, he was already using his wheelchair on many days to keep up with peers. Even though I’d used a wheelchair primarily since kindergarten, I still don’t have his skills!

The most obvious and intrusive way that OI affects your life is with the interruption of fractures. I fractured on the way to my first trip to Disney World. Our families tried their best to carry on with whatever plans had been made prior to the fracture. I made it to Disney World and there are some pretty hysterical pictures of Adam at various events in body casts! The less obvious way that OI impacted us was a strengthening of our resolve and I believe, character. We’ve had some harsh lessons in the pain of prejudice and ignorance but have emerged into confident, happy adults that are willing to go after what we want in life--even if it’s by finding and blazing our own path.

Miggy: Since I'm usually writing from a parents perspective of having a child with special needs, I'd like to ask about your childhood view of being different yourself. What was the most difficult aspect of having OI? Were you teased or did you have a more difficult road emotionally/mentally than other kids? Were there any positive things from being different?

Kara: It’s easiest to say what parts were NOT the most difficult. For me, it wasn’t the fractures, surgery, or pain. It was being little or using a wheelchair. It was the closed-mindedness of people that blatantly choose to stand in your way. Education can go a long way to reversing prejudice and motivating people to be more aware of their biases, but it’s the moments that you can’t blame sheer ignorance for someone’s refusal to accept you-THOSE have always been the hardest. I was not teased very often. Of course, I remember a few hurtful comments but I was fortunate to have excellent friends. It’s funny how kids’ perceive their world and what is tough. While the rest of the world assumed OI was my greatest challenge emotionally, I was more like many other children in that I found my parents’ divorce far more influential and difficult for me-at that time in my life.

There were definitely many positive things about being different. I love attending OI conferences and gatherings. I also made the very early connection between social justice movements and my own fight for equality and acceptance as a kid with a disability. I was a bit of an odd kid--I loved reading about things like the Holocaust, orphans, and civil rights. Looking back, maybe there was a reason that I focused on these areas!

Tuesday, December 19, 2017

Should I Rock a Pixie Cut?

I have been a long hair kind of girl my whole life. When I was in elementary school I always wanted to grow my hair out down to my waist. (My mom wouldn't let me.) In high school, I was so traumatized with constantly asking stylists for a trim and having them take 6 inches or more off (seriously, what is with that? Happens so much!) I stopped getting my hair cut professionally and starting cutting--or not cutting--my own hair so I could finally grow it long. It worked. Most of high school and college I had hair down to the middle of my back.

Finally, in my early to mid twenties I cut my hair to my shoulders. In my mind, short. And I loved it. Probably some of the best hair years of my life. My hair had some natural curl and I rarely had to "do" my hair for it to look good. In the last 12 years of life, as a wife and mother, my hair has been mostly long. I did take some scissors to my hair one night, years ago, in a fit of passion cutting it above my shoulders for the first time ever and immediately regretted it. I spent the next couple of years growing it out. I've had bangs off and on over the years but as for major change, that's about it.

I am not hair brave. I've never done extremes in styles or color (other than pink streaks for a short time in college. Thanks Gwen.) I like having dark hair and I like having long-ish hair.

I have NEVER EVER in my entire life wanted a pixie cut. Never. Not even a little. Not even when they were all the rage in the 90's and the Winona Ryders and Drew Barrymores and Gwyneth Paltrows of the world were chopping their locks off the showcase their perfect pixie faces. Not a year ago when my friend Molly saw this picture of me on Instagram and said, "Cut your hair into a pixie stat!" Never.

And then a couple months ago I saw this woman's hair on Anthropologie.com:

Thursday, December 14, 2017

Special Needs Spotlight || Frankie

My name is Sarah and I live in Brisbane, Australia with my partner Jonathan and our two kids, Frankie (4) and Evie (11). Jonathan and I have spent the last 22 years together. Looking back, work, travel and living overseas all kind of happened without too much drama. I was working as a nurse in Melbourne when I fell pregnant with Evie, and we decided to move back to Brisbane to be closer to our families. It was not until we had Frankie four years ago that our life took an unexpected turn, and the rabbit-hole, roller-coaster business began.

Frankie was diagnosed with Angelman Syndrome (AS) which is a neuro-genetic disorder that causes physical and intellectual disability, when he was 12 months old. A year later, when we were just coming to terms with his AS diagnosis and our new Special Needs life, he acquired a severe brain injury from a seizure. The brain injury affected his vision, mobility and ability to swallow. So he is pretty much fully dependent on us to do everything for him now, being tube fed and immobile. Since recovering from the acute after-effects of the brain injury and returning home from hospital he has remained quite stable and seizure free. Although physically he has not made many improvements, he has managed to adapt to his deficits and new reality in the best way possible. Frankie is pretty much all sweetness these days, and it doesn't take much to keep him happy and relaxed. He is a zen master, and we love being around him.

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Miggy: Hi Sarah and welcome. Thank you so much for being here today and sharing your beautiful family with us. First, can you take me back to when you first found out something was "wrong" with Frankie? Was it before birth, shortly after or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Sarah: When Frankie was born we didn't think there was anything wrong, he looked perfect. Even the Obstetrician commented when he first arrived on "what a fine specimen" he was. He did have trouble feeding and was very unsettled, with amazingly long periods of uncontrolled crying. We had him checked out and were told that neurologically he was OK. But by the time he was 6 months old we knew that there was something wrong. He had quite significant developmental delay and it was his physiotherapist who first suggested that Frankie might display some of the characteristics of Angelman Syndrome.

He was 12 months old when his Pediatrician carried out the genetic testing for AS and left a message on my voicemail telling me the news of the diagnosis. I was sitting in my car when I first listened to it. Although I'm pretty sure that using voicemail to break bad news is not recommended, I think he actually did me a favour. It hit me pretty hard that day, as I had already researched AS on the Internet and had absorbed enough grim facts to think our lives were over. I remember feeling completely devastated and picking Jonathan up from work and telling him, bawling. There was a real sense of grief at the loss of the life that we had imagined for him. There was a lot of guilt too. The intellectual disability was probably the hardest element for me. I didn't know what that would mean for him, or how we would relate to each other as a family. All the unknowns were pretty scary.

I don't think we had much time to be sad though, there was too much to do and Evie needed us to keep it together. We adjusted because we didn't have much choice and life went on, and we didn't come apart at the seams. Evie was being a trooper and friends and family kept us going. Then Frankie sustained his brain injury and it all got even harder. Despite everything life went on though, friends and family stepped in again. We had an amazing amount of support.

If you'd told me when Frankie was first diagnosed what was in store for us, I wouldn't have known what to think. Back then I doubt I would have been able to imagine us having a meaningful life with Frankie, as he is now. It would have sounded too depressing. There are definitely things that we have given up, and that we can't do now. It’s not easy and emotionally it can be quite painful. I know there is no happy ending or cure awaiting us, and logistically as he gets bigger it is only going to get harder to include him in our lives the way we want to. I would have focused on these hard things back then because I wouldn't have known about the positive effect that Frankie was going to have on us, and the way that we would feel about him.

One of my main fears when we first got his diagnosis was that we wouldn’t have a life, or at least the life we wanted. Involving holidays and all the things that you take for granted that will make you happy. I think I was more fixated on wanting, or expecting things to make me happy then. Frankie has made me appreciate what we do have in a way that I realize I never did before. It's more about the people and relationships now. Everything is harder and usually involves a team effort, there are more logistics involved, but we still do stuff and it kind of makes it better when we get there. We even travelled to Canada recently, which felt pretty great. I haven't let my wanting of holidays go yet.


Miggy: Please educate us on Frankie's diagnosis and how it affects his and your family's day-to-day life?

Sarah: Angelman Syndrome (AS) is a neuro-genetic disorder that causes severe physical and intellectual disability, occurring in around 1 in 15,000 people. In most cases, it isn't inherited and the genetic anomaly responsible occurs by chance around conception. It results from the loss of function of the UBE3A gene in the brain. The loss of the enzyme that is produced by this UBE3A gene prevents neurons from functioning correctly, leading to major deficits in learning and memory. Angels, as they're often called, have problems with movement and balance, and develop little or no speech. Around 85% will develop a seizure disorder and most have severe sleep disturbance. They do tend to be quite social and have a happy disposition, which was evident from the beginning with Frankie.

We’re told he was very unlucky to sustain a brain injury from a seizure. He has cortical vision impairment, so his vision is limited but we are still hoping that this will improve over time. He is a bit of a sack of potatoes. He can't sit up, or roll and doesn't have head or neck control. He can move his legs but finds it hard to use his arms, or to hold on to things. He can't swallow food safely as his swallow has been affected, so he is fed via a PEG tube and requires seizure medication. We do everything for him, reposition him and try to keep him comfortable, keep up with his various therapies. He wears AFOs and uses a standing frame, and we try to get him in his pool as much as possible as he appears to love the freedom of movement it gives him. We try to provide him with structure, involving the same people in a weekly routine which helps him to know what's going on. We get him outside for walks and rides in his bike trailer with family as much as possible, and we have some wonderful carers who help out too.

Thankfully Frankie's personality has remained intact. I think it would have been a different story for us if he had lost that. He is a good listener. He listens intently to what's going on around him and seems to recognize familiar sounds, and people he knows by their voices. There are no words, but he vocalizes and communicates with us in his own subtle way. We try to keep him engaged and interacting with us, and involved in what’s going on. So he tends to get wheeled wherever the action is in and around the house, particularly where there are kids. He is the king of appreciation and he never complains, but is definitely happiest when close to you, and being held. Like the rest of us Frankie has distinct moods, but is very sweet and polite. I'm pretty sure he has a fake cough, that he uses occasionally to get our attention. He recently started going to a Special School for the vision impaired one day a week, which he seems to enjoy. So he is a pretty busy kid.