Wednesday, March 14, 2018

House Update || Bathroom Inspiration pt. 2

We are renovating a 1961 mid century home and gutting it from top to bottom. In addition to be a dream house, it's also going to be an accessible dream house. You can follow along from the beginning here and here. Also, see bathroom inspiration part 1. here.

Master Bath: Last week I shared my visions for 2 of our 4 bathrooms and this week I'd like to share the last 2 bathrooms. For our master I'm just riffing off  of the bathroom in our current home that we remodeled a couple years ago. (Pictured above.) Lot's of white tile, a wooden mid-century styled vanity, but this time with brass lighting and black fixtures. And while I originally wanted another clawfoot tub (and in the end we may just go that route again) I love this modern version of the clawfoot and would love to somehow make it happen. I say "somehow make it happen" because this tub is not cheap--aka stupid expensive--but we might be able to make our own version. Stay tuned. If not, then it we'll renovate an old clawfoot again and I'll be super happy with that as well.

Last Bathroom: As I mentioned last time, I have had absolutely zero vision for this space. I initially decided to start pulling things that I love and see how they mesh together and now I'm really digging it! I have been wanting to so some sort of patterned tile floor, but have found that most tiles feel too traditional, too trendy or just too busy. But I am loving this simple black and white repeating diamond pattern a lot. Especially paired with a super simple vanity and yes, more black and brass fixtures. Once again I'm channeling Sarah Sherman Samuel as my bathroom style muse as this is a custom vanity she designed for her a-frame bathroom. The bad news is you can't buy this vanity. Boo! But the good news is it's a super simple design I think I'll be able to get something like it made that will be around the same price as a store bought vanity. Yay! Basically I'm digging the light wood with the clean lines, black and brass accents and a bold but not overwhelming pattern on the floor. I'm even liking the pops of light pink and blue from the backgrounds of the brass fixtures and thinking about ways to incorporate those subtle shades into the room.

Master bath sources: subway tile / brass sconce / faucets / medicine cabinets / vanity / freestanding bathtub / planters / hex floor tile

Last bath sources:  black sconce / large round mirror / toilet paper holder / faucet / brass hooks / vanity (inspiration) / hex towel ring / cement floor tile

So there they are--4 full baths for our place figured out. It still feels strange to me to think we'll have 4 full baths--definitely the most I've ever had in my life--but when I think about the layout of the house, I confident we'll get plenty of use out of each bathroom. Hello.... we've got three daughters. Thoughts? Feelings? Feel free to share. 

Friday, March 09, 2018

Special Needs Spotlight || Nora

Hi! My name is Lori. My husband Alex and I have two daughters, Emma (14) and Nora (12). We met and have lived in Seattle for 23 years or so. I am from upstate NY and he is from Wisconsin. We love Seattle and have an amazing group of friends and family who support us. It was a complicated and interesting start to our life as special needs parents. But now it's just life.


Miggy: Welcome Lori. I'm so glad you are here to tell us about your daughter and to share more about her condition agenesis of the corpus callosum or ACC, which I have never heard of before. First, can you take me back to when you first learned something was not right with Nora? 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?

Lori: We had our first daughter Emma 6 weeks early because of preeclampsia and I had to be induced to deliver the baby for my health. She was only 4 pounds! She was in the NICU for about 2 weeks. It was pretty scary but little did we know…

So two years later we were pregnant with baby #2. I was seeing a high risk OB to make sure my health and the baby's health was monitored closely. At our 20 week ultrasound they found something in the baby's brain called an arachnoid cyst. These are sacs filled with fluid in the brain and typically have no symptoms. Some people have them their whole lives and never know until they need an MRI for something else. The doctors assured us that we shouldn't have any worries unless the baby develops seizures or bad headaches and then they may need to place a shunt in the cyst to drain it.

Fast forward to February 2006, Nora was born healthy and twice as big as Emma, 8 1/2 lbs! We had an MRI when she was 4 months old to see if the cyst had grown and they saw 2 more. There were still no symptoms so we would have another MRI at 1 year. We watched for seizures and I really tried not to worry. Then at about 9 months I noticed she wasn’t really sitting up, making eye contact, grabbing for toys, etc. All the typical things she should be doing. She also had a weird head tic, it looked like she was dropping her head to her chin. Our pediatrician wasn't too concerned. Then at 11 months I insisted that there was something wrong. I had already signed her up for early intervention because I was convinced Nora had autism and I needed answers.

When we finally had another MRI Nora was around 13 months old. It showed the 3 cysts, which luckily did not grow or need a shunt, but it also showed that she had something called agenesis of the corpus callosum (ACC). This is a disorder that affects the part of the brain (the corpus callosum) that connects the two hemispheres and is basically the main highway for information to travel in the brain. She had partial agenesis so she was only missing the back third of her corpus callosum. The neurosurgeon then sent us to a neurologist. When we finally met with the neurologist, I was still concerned with her head tic. He sent us for an EEG to see if she was having seizures. Turns out she was and they were called Infantile Spasms (also called West syndrome). It didn’t sound too scary but turns out it was super rare and can cause serious developmental delays if not treated immediately. We were immediately sent to the hospital and started ACTH which is a first line medication to stop the infantile spasms. Luckily the spasms were gone after 5 days of treatment. The hardest part was that we had to give her daily injections of the meds for 9 weeks.

It was a very scary time for our family. I wasn't sure what to expect of Nora's development with so many malformations in her brain. I think I was prepared for the worst case scenario. We had no idea what her future held and I felt a loss for the life we had imagined for our daughter.

Luckily, Nora's development skyrocketed after her infantile spasms were gone. She started crawling and walking pretty quickly although she didn't talk until she was about 3 1/2. We kept her in early intervention preschool, speech therapy and pretty much every other therapy out there and Nora made progress in her development. She was the tortoise, slow and steady.
Miggy: Will you please describe agenesis of the corpus callosum or ACC--what are it's hallmarks and the red flags to look for. And can you explain how it specifically affects your daughter's, and your family's, day-to-day needs?

Wednesday, March 07, 2018

House Update || Bathroom Inspiration part 1

We are renovating a 1961 mid century home and gutting it from top to bottom. In addition to be a dream house, it's also going to be an accessible dream house. You can follow along from the beginning here and here.

Hi! I'm really excited to talk more about our Accessible Dream House today and to share some more inspiration photos. Things have definitely started moving, but at this point it always feels like it's not fast enough. However, our contractor wants to get our plumbing and lighting fixtures decided asap, so it's finally starting to feel real! Today I wanted to talk everything bathrooms.

As I've stated before, everything is down to the studs. Which means our bathrooms are all going to be entirely brand new. This is both super exciting and a little daunting. Our new place will have four full bathrooms and yes that is a lot of toilets to clean. But I'm also excited, particularly at the thought of having more space for guests.

Some of you may remember our accessible bathroom reno from a couple years ago. As I mentioned back then, the bathroom wasn't strictly ADA accessible, but rather it was as accessible as we could make it for Lamp and our family. Our new bathrooms will be a lot more ADA kind of accessible in that they will have a 5 foot turning radius in the middle for wheelchairs and we will have the walls prepped for grab bars at 2 different heights. There will still be Lamp specific modifications as well.

AND they're going to be pretty. Accessible design doesn't need to--nay SHOULDN'T--look like a sterile hospital environment. It's an unfortunate truth that the disability community often gets the shaft when it comes to good design. Of course function is important, but it shouldn't come at the cost of good design. I'm hoping to create a home that is accessible, functional and beautiful.

Check out what I'm envisioning below.

Monday, March 05, 2018

I've Written a Children's Book + It's Getting Published

I am so excited to be able to finally spill the beans on this! I have written a children's book that centers on disability and it is getting published. It will be available in March 2019! 

I'd like to tell you a little about the book, how it came to be and why I felt the desire and a push from the Universe to do such a thing when I had never, ever thought of writing a children's book before.

In her book Big Magic, Elizabeth Gilbert talks about ideas as a sort of esoteric spiritual matter that float around in the ether choosing a person to land on to help bring them--the idea--into existence. And if that person acts on that idea, great! The idea has a chance of coming to fruition. But if the person chooses to ignore it, the idea will go find someone else to land on to bring it to pass. I can remember the exact moment the idea for this book landed on me. I was actually at Alt Summit, in Salt Lake City at the time. I was standing there talking to some women about what I do when someone said, “You should write a book.” And I said, “Yeah…I want to do that, I’ve actually started…” And then she said, “No, I mean a children’s book.”

Boom. The heavens parted, angels sang, and a glorious light filled the room. (I feel like I should clarify for all my Mormon friends that I don't mean any of this literally. It's just a metaphor.) But right then and there I knew that I was going to write a children's book and I knew exactly what it was going to be about. I knew the plot, I knew the characters (mostly) and I just knew. 

Now, one could argue that the idea was hardly floating around in the ether, because a real live person told me that I should write a book. But that is just one of many ways ideas come to us and in my personal experience it is a common way that ideas, the Universe and God communicate with me--through other people. The woman who spoke those words was just half of the equation, the other half was the force with which the idea hit me. That force, was the Universe slapping me on the back and yelling in my ear, "Wake up! We're talking to you Suga'!" (In my head this voices sounds a lot like Sally Struthers.) So in that sense, it was my idea. It picked me. It landed on me.

And because the Universe is wonderful, all sorts of amazing things happened over the next day and a half while I was still at Alt Summit to prod me forward in this endeavor. For example there was a well known illustrator there who was drawing portraits of attendees for free. When I went to stand in front of her she stopped and said, “Is your name Amy and did you live in Hawaii 20 years ago?” Yes and yes. Stunned she said she just had this flash of recognition as soon as I stood in front of her. I realized at that moment that I was going to ask her to illustrate my book.

Later, this same illustrator also passed along a contact who lives in NYC and who also works in publishing. I wrote him a few times and he was so kind and helpful. When I was writing my 3rd email to him, it suddenly hit me. I emailed him and said, “Forgive me if I’m wrong, but I think you may have been my manager at Los Hermanos (a restaurant) in Provo many years ago.” We both couldn't believe it, but I was right. Chills.

That same Alt Summit as I was leaving for the airport and headed home, I prayed and begged the Universe for more help and good karma even at the airport to help make my idea a reality. As luck would have it, I was in the very long security line next to a woman I recognized from the Alt circuit, but had never spoken to before because she is a "big deal." This "big deal" has had collaborations with Anthropologie, Target, and is just a wildly creative and successful person. But I knew exactly what the Universe was doing so I started chatting with her. When I told her about my brand new baby of an idea she excitedly told me she thought it was wonderful and that she had all sorts of contacts in the publishing world and she was going to connect me with them. She gave me her business card and and I promptly treated it like the golden ticket it was and carefully protected it with my life. (Life tip—I also took a photo of her card with my phone.)  

Friday, March 02, 2018

Special Needs Spotlight || Naylah

Hi my name is Daniella and I am the mother of one incredible human being her name is Naylah and she just happen to have trisomy 5q a rare genetic disorder . We are not sure of how many other children there is with trisomy 5q, but we were given someone truly rare. Naylah is non-verbal but she sure will let you know her likes and dislikes , have a feeding tube to get extra calories as her intake via mouth is not much( even tho she will try anything, she has a hard time coordinating her chewing and swallowing) the tube is really making her thrive.

I am originally from Brazil and grew up in Switzerland, came to the US to learn English and study and in the meantime I met David, (Naylahs dad) who is originally from Senegal. We are both French speakers and Naylah can understand some. She has two older siblings from Dads side. Aby and Alex who she is in absolute awes with . David and I separated after 6 years. I am now a single mom and now juggling working, therapies, and doctor's visits.

Naylah is a truly joy to all of us. Despite the rough patches, the hospital stays , that little girl that once wasn’t given much hope from doctors is reaching every milestones at her own time frame. She is full of sass , full of life, love to play with her friends, school and love going to her doctors visit.
We are absolutely thankful for Naylah and wouldn’t trade a single thing about her. What makes her different makes Her.


Miggy: Welcome Daniella! Thank you so much for sharing your story and your precious Naylah with us today. First,  can you take me back to the day you knew Naylah would have special needs? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Daniella: I had a so call “normal” pregnancy until my 20 weeks check up, when they noticed something wrong with Naylah's heart. At 37 weeks I was induced, plans were to have heart surgery right away but she was born pink and full of life.
Months were passing and something was “off.” She wasn’t meeting milestones, and barely eating. Cardiologist reassured it wasn’t the heart, he would often stare at her and one visit he said “Naylah's head is really small and her ears set are really low, I would advice to see geneticist.” So we did. Naylah was 5 months old then, fitting on 0-3 months clothes. The period of waiting was the longest. Until we received that phone call to come to the office. My heart sank, I knew if they weren’t telling by the phone something was wrong but what was it? She calmly came in with a paper, told us to sit down and that Naylah had trisomy 5q a rare genetic condition. So rare, that the only info she could give us, was a google paper with the characteristics of a child with trisomy 5q. I kept looking at Naylah. Looking at the doctor. Looking at her dad who kept telling me in French, “Don’t worry, I’m sure is nothing.”
Gosh. How all the sudden I felt so guilty? How can 3 words all the sudden make you doubt your ability as a parent? As I was reading the notes, tears kept falling. And in just an instant all the dreams I had for this child might never happen and all the sudden our journey was about to change. A heart problem can be fixed but you don’t fix genetics. Is the world going to accept her now? Guilt took over me.  I was “mourning” for that child that was in my arms and I was so lost about what our future was going to be like.
That day I was handed out “Welcome to Holland” poem by Emily Perl Kingsley. It has been a dear poem to my heart.
Five years has gone by, even though I wish things to be different for my child, I no longer cry for the dreams I had for her. I’m scared of the future and acceptance from others but it is also my job as a mother to educate those who asks and wonder what’s wrong with her.
Naylah is a pure joy and to this day by being non-verbal and only saying “mommy” and “daddy” I feel like I have a whole conversation with my child. She shines such a bright light.
I advocate for her. I go behind every single thing she needs. It’s our new normal. She is loved, oh that she is.

Monday, February 26, 2018

A New Me

This Little Miggy || Retro 80's Haircut
Hi! First, just so you know I'm in Palm Springs right now for Alt Summit. I'm a speaker this year--which is very exciting for me--and I'll be Instagramming from there at lot this week, talking all about the conference and posting lots of photos. So be sure to follow along on IG if you want to see what I'm up to.

A haircut can say a lot. Especially when you're a woman.

In many cultures and religions a woman's hair is to be kept long as a sign of respect for God. In the 1990's Jennifer Aniston started a hair-volution with "the Rachel" and women across the country were imitating that iconic cut. Same when  Katie Holmes brought back the 1920's sleek bob something fierce in the mid-2000's. And remember when Kerri Russel's character Felicity cut her hair in season 2 back in 1999 and their ratings bombed?! The WB (the network they were on at the time) sent memo's around to all the other actresses that they were NOT to cut their hair under any circumstances unless otherwise noted. That really happened. Crazy right?

I've had a thing for long hair all my life. As a kid I always wanted super long hair, but for various reasons it never happened. In high school I spent a lot of time and money trying to get the perfect, glossy locks. At some point I accepted that my hair wasn't ever going to be down to my butt and eventually I cut in shoulder length in college.

In general, I'm very particular about my hair. My first real hairdresser used to tell me I was in his top 10 pickiest clients. Easy. My most recent hair dresser noticed that I was usually the kind of girl who freaked if you cut off a inch too much. (In my defence I can't count the number of times in my teen years and early 20's when I asked for a trim and would get about 6 inches chopped.  Probably why I started cutting my own hair in high school and didn't let anyone touch it for probably 6 years. It was minor trauma.)

It can be big deal to cut your hair when you're a woman. It signifies something doesn't it?

Here's what it signified for me: Fearlessness and being ready for change.
For the past couple of years I've had blunt bangs with shoulder length hair. It's been a good look. However, I started feeling the itch for change and began growing my bangs out for almost a year. Then about 3 months ago I had a sudden desire to do something drastic with my hair--get a pixie cut. I have never in my life even considered a pixie cut. But I thought about it a lot. A huge part of the desire came from the idea that, What if I love this style of hair, but I'd never know because I never tried it? I talked to my stylist about it. He said, he thought I would look amazing and just to let him know when I was ready.

Friday, February 23, 2018

Special Needs Spotlight || Dylan

Hi, my name is Helen and I live in Cincinnati, Ohio with my husband Sean and our six children, Hannah (19), Liam (12), Finn (10), Reilly (8), Dylan (5) and Cillian (1). I look forward to reading the spotlight each week, so I'm honored to have the opportunity to talk more about my son Dylan and his journey with a disease called Eosinophilic Esophagitis (EoE). 


Miggy: Welcome Helen! I'm so excited to have you here today and to learn more about your son and his condition which is called Eosinophilic Esophagitis. First, can you take me back to the day you knew something wasn't quite right with your son? 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?

Helen: My pregnancy was normal as was Dylan's birth. We noticed immediately that he was smaller than our other children and very unhappy. He needed to be swaddled tightly and moved almost constantly. Dylan didn't arch his back while nursing or show any signs of reflux. He just didn't have much of an appetite. At his fourth month doctor visit, his failure to gain sufficient weight was already starting to raise flags, and the doctor recommended introducing baby cereal. Cereal didn't help with weight gain, so we began visiting specialists, running tests and starting therapies. Dylan's first diagnosis was Failure to Thrive, and it devastated me. I felt responsible and wanted more than anything to figure out what was going on and how to help him. I spent countless time researching conditions and diseases. I spent a similarly frustrating amount of time searching for the perfect food or drink that he would like. I thought that if I could find the right cup, the perfect spoon, the magic food, then maybe my son would eat. Dylan didn't receive the EoE diagnosis until he was 18 months old, and the diagnosis hasn't necessarily led to the clarity and answers I hoped it would. I am definitely in a different place today, though. I've stopped trying to "fix" Dylan. I want him to have a relationship with food only if he wants to. I don't want him to eat by mouth to make me happy. That won't be sustainable. I've found a way to meet him where he is at and work from there. The shift in mindset has really helped take the pressure off of me and off of him. I do have general worries for his health and well-being, but I also recognize that this is his journey.

Miggy: Will you please educate us about Eosinophilic Esophagitis--what are the hallmarks of the condition and how does it affect you and your son's day-to-day life?

Helen: Eosinophilic Esophagitis (EoE) is a newly recognized chronic disease that affects 1 in every 2,000 people. It occurs when white blood cells, eosinophils, accumulate in the esophagus and attack the tissue causing injury and inflammation. The eosinophils are triggered by an allergic reaction to a food or environmental allergen. Symptoms vary by individual. Infants and toddlers typically have issues with eating and growing. School age children often have stomach pain, trouble swallowing and vomiting. Teenagers and adults may experience painful swallowing and food impaction. One of the hardest things about EoE is that the only way to monitor the eosinophils is to take biopsy samples of the esophagus during a procedure called an endoscopy. A long narrow tube (endoscope) containing a light and a camera is put down the throat into the esophagus and through the stomach while the patient is under anesthesia. Because outward symptoms don't always match what is going on in the esophagus, scopes and biopsies need to be conducted on a regular basis to monitor the disease. For example, Dylan had a period of time where he would throw up daily. When he had a scope, I expected eosinophils to be present in his esophagus, but there were none. On his most recent scope, there was widespread damage in his esophagus and eosinophils present, but he was not having any outward symptoms. In fact, he was doing very well with eating. As far as treatment of EoE goes, there are several options. Allergy testing can help show which foods to eliminate. This testing works in many cases but not all. No foods showed up as allergens for Dylan. Currently he takes an acid blocker medicine to help with the disease. Some people with EoE rely on special types of formulas, eliminating food from their diets, and/or using swallowed steroids. There is no cure for EoE at this time, and EoE seems to affect everyone who has it differently. Here is a video I made to celebrate Feeding Tube Awareness Week that gives you a little peek into our life.

The primary way that EoE affects Dylan's daily life is in his limited relationship with food. Some of the professionals that we have worked with believe that Dylan stopped eating because it was painful. Trusting that food is safe and eating again has been a slow process. Since the age of one, Dylan has been fed through a feeding tube. Four years later, he has made huge strides, but he still needs the G-tube for almost all of his nutrition. Dylan used to choke and gag every time he ate. Thankfully that has improved greatly. He didn't say he was hungry until he was four years old, and I didn't even recognize the phrase when he said it. His relationship with food changed the dynamics of family meals and how we approached holidays like Thanksgiving, Halloween and birthdays for several years. As he has gotten older, though, he has found his own way to participate, and we've followed his lead. He'll fill his plate with foods he wants at dinner and only eat a small portion of them, decorate cookies at school and pass on eating them, and trick or treat and give the candy to his siblings. He doesn't seem to be bothered by his limited relationship with food, so we aren't either. We are happy to have him join us in whatever way he chooses!