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One Thing Everyone Should Do

Have you ever heard someone say, “Everyone should ___________ at least once in their life.”? As I was checking out this cartoon series about Magical Things I’ve seen New York City the other day I had the thought, “Everyone should live in New York City at least once in their life.” Of course that’s completely not feasible, but in a weird way I think it should happen. And maybe not New York City, but a big city. Why? Well first, the people. NYC draws the most interesting, creative, brilliant, crazy and beautiful people. We lived in NYC for 4 years and the friendships I made there are ones I still treasure.

Also, it’s a different way of living. I had assumed that “the big city” meant life was more, more, MORE. But I was surprised to discover that living in NYC meant living in a very simple way. Small apartments mean that you can’t have too much stuff. We never bought a single piece of furniture without thinking very hard about where it would go and what we would need to get rid of in order to accommodate it. And not just furniture, but dishes, sheets, towels, baby toys… I remember someone (not living in NYC) buying me a wipe warmer for my first baby and I was like, “I don’t have space for this!” and returned it for something else. (Although the gift was lovely and I appreciated the thought.) Also, I found that I’ve known our neighbors and neighborhood better in NYC than in any of our suburban homes. Since almost no one has a back yard in New York, the parks and the streets are every ones back yard and you see and hang out with people much more frequently on a daily basis than in a quiet neighborhood street. I never felt isolated as a mother with a newborn baby in New York, but I have felt that way when living in the suburbs of San Antonio and Cincinnati.
 
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Special Needs Spotlight || Torryn

Hi, I am Sinead. I am a wife and a busy Mom of 3 wonderfully kind and chaotic crazy kids and 2 neurotic dogs. Torryn is our eldest at 10 years old and he has Down Syndrome and Severe Speech Apraxia. We are from Melbourne, Australia and moved to California for my husbands career in 2015 but we’re just about to move to Seattle! I am a Health and Wellness Coach working with Special Needs Moms on their health and wellness, because I am a strong believer that us Moms make the world keep spinning. We are the center of the chaos and we need to make ourselves a priority, we need to take care of ourselves properly so we can in turn take care of the ones we love. You can read more about my work here, or visit my FB page here.

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Miggy: Hi Sinead and welcome! Thanks for sharing your story here on TLM today. Let’s start at the beginning, when did you first learn that your son, Torryn, had Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Sinead: Torryn was actually born in Bangkok, Thailand, we first found out Torryn has Down syndrome on day 3 of his life. It was difficult initially. I was alone in the hospital nursery with Torryn and the doctor came and requested I sign some paperwork. I looked up and asked her – what did I just sign? What was it for? She was a Thai Doctor and in broken English she said, “For genetic test, we think he have Down syndrome. He have funny eyes.”

I had never met anyone with Down Syndrome, I didn’t know much about it. I just knew what it “looked” like. We were very blessed as there was a nurse that worked at the hospital who had a son with Down Syndrome and she would visit us each day. She spoke to us about her son who was in his 20’s. She was so kind and so generous with her time and compassion and as we learnt more about her son – he was a photographer and rode a bike and used a computer – the future slowly brightened. Within a week I was over the initial shock and ready to prepare for the future. We quickly realized that as long as he was happy in life, he felt loved and found joy, that is all that truly mattered and ultimately it’s the same for all of our children. It was just we were receiving that life lesson earlier than most. You can read more about his birth here. 
 
[readmore title=”Click through to read more about Torryn”]

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All Time Favorite Movies

The other night I introduced my children to the movie Clue and when I shared this on Instagram I got ALL sorts of messages from people proclaiming their love for this film and quoting the movie back to me. “Flames, on the side of my face…” I remember living across the street from the grocery store as a kid and renting that movie from their small selection and watching it over and over. So much that once it had a 10 day over-due fine! (Also, for fun try explaining to your kids about “renting movies” and how it was different from streaming and not redbox either… and you needed a VCR. They will be so confused.) Clue is definitely on my all time favorite movies list.

Which got me thinking, what else is on that list AND what makes a movie an all-time favorite?

For me, my “all time favorite movies” generally have an nostalgic attachment. I believe there are certain movies you have to see in a specific period of your life for them to really attach to you. This seems especially true of kid-centered movies and seeing them during your childhood. Goonies is a big one that comes to mind. I remember meeting someone in college who didn’t see Goonies until they were in their 20’s and they were like, “I don’t know… it was OK, but I don’t get why everyone loves that movie so much.” At first I wanted to punch this guy in the neck, but then I realized that if he didn’t see Mikey give his “this is our time down here!” speech when he was actually a kid who believed that adults were emotionless robots trying to ruin our lives, well then of course he didn’t get it.

So nostalgia is a big one. Next, quoteability. I mean Clue is nothing but one great quote after another. There’s the whole 1+2+1+1 conversation between Scarlett and Wadsworth and of course Mrs. White’s imfamous “Flames… on the side of my face…” moment (which was apparantly ad libbed. Of course it was.)

Lastly, music. Always the music. And dancing if the movie calls for it. Pretty in Pink is probably my favorite 80’s teen romance (with Can’t Buy Me Love a close second) and Ducky’s dance in the record store to Otis Redding… I mean Andi should have forgetton all about Blaine right there. (Did you know that in the original Andi and Ducky ended up together? But it didn’t test well with viewers so they changed it. Which makes a lot of sense as I’ve often wondered why Blaine tells her he always believed in her, but she didn’t believe in him and I’m like WHAT ARE YOU EVEN SAYING YOU DOUCH BAG YOU WERE THE ONE WHO WALKED AWAY FROM HER? AND WHY ARE YOUR SIDE BURNS COVERED OVER YOUR EARS?)

Anyway, here are some of my favorite moments from some of my all time favorite movies:
 
[readmore title=”Click here to see what movies are on my all time favorites list”]

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Now About That New Year || 2019

2019, you came in like a wrecking ball.

On New Years Eve day we laid our dear Grams to rest. That evening our New Year’s was spent with 3 out of the 5 of us barfing our guts out in a hotel room located in Scottsbluff, Nebraska with an early morning 3-hour-drive to the airport in -12 degree weather to look forward to. Fun!

We made it home safely–if not a raggedy crew with crumpled, ripe clothing and stale, sick breath. (We are so sorry to anyone who had to sit next to us on that flight.) We enjoyed a few days of recovery. Then my birthday was Sunday (huzzah)and yesterday my oldest had a (minor and not serious)surgery. And now I’m sick again–head cold with glands swollen out of my neck. (My doctor was practically feeling-up my neck he was so impressed with my bulging glands!)

All of that was proceeded with moving a week before Christmas, then the actual holidays (plus 1 birthday), which made for a very busy month, on top of a very busy period of our lives.

 
[readmore title=”Click here to read more about my 2019 goals…”]

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For Grams

It seems ridiculous to say that my 96 year old grandma died unexpectedly, but really and truly, I wasn’t expecting it. I thought there would be a decline of some sort, a phone call saying she was transferred to hospice and that we should come as soon as possible. But if you’re lucky like grams, there is sometimes a quiet ushering out of this world that no one sees coming. One minute grams was brushing her teeth and apparently the next minute, she wasn’t. Just like that.

I don’t know anyone that had more angels watching over them then my grams. She lived alone in her later years and one day she got locked in the bathroom. She was there for 3 hours, praying for help when help arrived in the form of the missionaries, who had unexpectedly stopped by and then unexpectedly helped rescue Grams from the bathroom dungeon. She fellwice in recent years and both times it was when family was around and miraculously neither fall left her with serious injury. The second time was particularly harrowing as she fell face forward in her home, breaking her nose and busting her head open. She was bleeding profusely. My cousin, her grandson, was driving across the country and was staying with grams for less than 48 hours. Mercifully this fall occurred within those 48 hours. She later recounted that she couldn’t have gotten up by herself (“I couldn’t move a muscle!”)and wasn’t wearing her necklace with the call button. Had her grandson not been there, it was agreed by all that she would have bled out and died. She was in her 90’s when this happened and the photo my uncle sent of me shows my grandma with two black eyes, blood streaming down her face and a smile. A smile.Only Grams.
 
[readmore title=”Click here to read more about my beloved Grams.”]

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Accessible Dream Home Update || One Week + Christmas

Well hello there.

The craziness that was moving + Christmas in the same week has concluded. We have officially lived in our new house a week and a day and I love being here. We all love it, but I might love it the most–this house was another baby to me. From that very first walk through when we were kicking past trash, walking into spider webs and when I would not step more than 2 feet into the kitchen to committing purchase, to months and months and months (21 to be exact) of waiting/designing/planning, to surprises and baby steps the entire way, to this. Our accessible home. It is both beautiful and functional. Not perfect, but pretty damn close.

The past two weeks have been a whirlwind. The moving truck came nearly 2 weeks ago, but we couldn’t actually live in the house for a few days after (waiting for our certificate of occupancy) so we had to stay in an Airbnb, which meant that for a couple of days we were spread between 3 houses. Zuzu also preformed in the Nutcracker, my mom was in town, we cleaned our old house and handed over the keys, we unpacked boxes and waited for the final OK and then we got it. We were allowed to move into our new home!

And then my grandma passed away. On the same day.
 
[readmore title=”Click here to read more about the first week in our new house!”]

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Friday Spotlight || Ellie, Transgender

Hi, my name is Janet and I live with my husband, Derek, in New England. I grew up primarily on the West Coast, while Derek is born and bred New Englander. We met after I moved to Boston for graduate school almost 15 years ago, were married over a decade ago and have two beautiful children – Jason is 6.5 years old and Eleanor is 5 years old. Each of our kids are “just a little bit extra” – Jason is on the autism spectrum and Ellie is transgender. Today I’ll be sharing about our journey raising Ellie, who we all assumed was a boy at birth but now identifies as a girl. While being transgender is not the same thing as having a special need or disability, her transgender identity is often misunderstood, sometimes approached with fear and frequently places her in the margins of society. Since Ellie is not old enough to consent to having her identity made public, and due to concerns for our family’s safety and privacy, we’ve chosen to remain anonymous. I’d love nothing more than to share Ellie’s picture with you all– she is, in my very biased opinion, totally adorable–but I hope as you read my words here that you’ll be able to visualize our Ellie as the precious little person that she is.

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Miggy: Janet, thank you for being here today and sharing your family’s story with us. You have a daughter who is transgender. First, can you please explain to us what that means in the most basic sense? Second, when did you first start to see signs of her desire to be a girl and how did you first react? How do you feel about her being transgender now?

Janet: I’m deeply honored that you’ve invited me into this space to share my family’s story with you and your readers. Thank you for your openness to our experience, which I know is really different from most people’s and can sometimes be a mind-boggling topic to confront. I’d also like to state upfront that every transgender person’s journey is unique, as is their family’s along with them–this is just my story as a Mom to one very special, brave kiddo.

If you’re new to what to the whole idea of gender identity or what it means to be transgender, here’s my quick attempt to explain: for the vast majority of us, how we feel about our gender identity matches society’s expectation for us based our body parts; this is what is called being “cisgender.” When a person is “transgender” is means that their gender identity (i.e. how they feel about who they are, in terms of being a boy, girl or something in between) is different from their sex assigned at birth (i.e. when the doctor saw a penis in the delivery room and declared “It’s a boy!”). Sometimes you might hear it explained as “your sex is what’s between your legs, while gender is what’s between your ears and in your heart”.
 
[readmore title=”Click here to read all about raising a transgender child…”]

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Hey, I'm Amy!

I'm an author, artist, and disability advocate. I live with my handsome husband and three beautiful daughters in Cincinnati, Ohio.

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