Sunday, February 26, 2017

10 Years and a Harry Potter Birthday

This Little Miggy || Harry Potter Birthday
When this girl was in 2nd grade they had a day where the teachers assigned them a fictional character name for the day. Well her teacher was obsessed (obvi) with Harry Potter and therefore she gave all her students a Harry Potter character to embody for the day.

This excellent daughter of mine was chosen to be Hermoine.

You guys, this very well may stand as the highest honor of her young life. As her teacher later said to me, Of course she choose her to be Hermoine... she is Hermoine. She really is, and we are so lucky.

Back then we were early in our Harry Potter reading (book 1 or book 2) but the HP bug had bitten and this girl has been obsessed ever since. One of the best parenting decisions I ever made was to save these books to read with just her and it's been a treat. We are currently finishing book 7, and going at a snails pace because I think neither of us wants it to end.

Naturally, her 10th birthday (we only do friend parties every other year) had to be a Harry Potter birthday party. She also got to have a combined party with two of her best friends--twins who are only a few days older--and the result was fantastic birthday had by all.

I thought I'd share a few party details because, well I always love seeing these kind of things.

First, I really do love having birthday parties at home. I love the old-fashioned, homemade goodness and creativity that comes from games and craft tables. However, I also appreciate the ease of having a birthday party at some sort of party emporium where kids can bounce off the walls and get a little crazy while someone else cleans up the mess yaknowwhatI'msaying? This time we opted for the latter and it was great!
This Little Miggy || Harry Potter Birthday
13+ girls jumped and bounced and rolled and slid and climbed and had a great time! 2 different rooms for a little over an hour and by the end the kids are plum tuckered out.

This Little Miggy || Harry Potter Birthday
And while you can't quite go all out on decor (since the surrounding room colors tend to clash a bit) I always try to make that one table look really good. The twins' mom and I joined forces and this is what we came up with.

Friday, February 24, 2017

Special Needs Spotlight || Koko

Holly and Joe are parents to Kokoro, who is a cheeky, happy, musical 18-month-old with a great sense of humour. Kokoro, or Koko, has CHARGE syndrome, which is one of those unexplained spontaneous genetic mutations that occur at conception and result in a range of health issues. For Koko, this means hearing and vision impairment, heart defects and a range of other issues including low muscle tone and missing semi-circular canals which greatly impact her balance. (For more info on CHARGE check out the CHARGE Association

Miggy: Welcome Holly! I'm so happy to be featuring you and your sweet family today, especially your little Koko. (That name! I love it.) First, can you take me back to the day you knew your daughter would have special needs? Was it during pregnancy, shortly after birth or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Holly: The first time that there was any mention of there being possible issues with Koko's health was during our 20 week scan. During the 13 week scan, I had been labeled as "low risk" and I now look back on the way I approached the 20 weeks scan as incredibly naive. We were expecting some cute pictures and to hear our baby's heart beat.

Instead, we were told that there were some "structural issues" with our baby’s heart and brain by the technician and then had to wait 8 hours until the supervising doctor was available to give us more information. When he did he basically presented the information as if there was no alternative but termination and my rather hysterical reaction thankfully encouraged him to hand us over to a team of incredible midwives and doctors who specialize in "at risk" pregnancies. However, as it was Friday afternoon no one was around, so we were sent home for a rather agonizing weekend.

Once we begun further investigations and research it became clear that things were not so black and white, and over the pregnancy, it began to appear that our baby's brain was in fact a variant of normal. However, she did in fact have heart issues. Additionally, we were told that as there were a couple of issues detected, there was an increased possibility that she could have a genetic issue.

As we aren't religious, we didn't have a go-to stance on how we would react in this situation and really hadn't considered it as a possibility. But over time and lots of chats, both my husband Joe and I felt that this baby was supposed to be born and that between us and our support network, we would be able to provide a loving and happy home for her. Her diagnosis of CHARGE unfolded in the weeks after her birth, and initially felt so devastating I wondered at times if I had subjected her to a life of suffering for my own selfish reasons. These days, most days, it is pretty clear that she is a happy kid who enjoys her life.

Wednesday, February 22, 2017

Favorite Shows Featuring Disabilities

Recently one of my favorite shows, Switched at Birth, returned from a long hiatus for it's final season. It's a show that has a lot to do with the deaf community and has been really eye opening for me. I thought I'd do a quick round up of some of my favorite shows and movies that center around disability and talk a little about why I like them, what resonates with me, what doesn't, etc. Of course I'd love to hear your thoughts as well. 

First up, Speechless. Such a great show. Really, a show like this has been a long time coming. It's a sitcom centered around a special needs family, the DiMeos, who have three children one of which  who has cerebral palsy and is non-verbal. While it is based on the lives of a special needs family, as creator Scott Silveri puts it, "this is no documentary about disability."

I love this show for a few reasons: One, it's really great that the actor who plays the character also has CP in real life. This might be new to you, but the idea that disabled characters should be played by disabled actors is a kind of a whole, big, thing. (Since Rain Man, 14 of the 27 Best Actor Oscars have gone to a man portraying the sick or handicapped...yeah. This is problematic for many reasons. Don't even get me started on You Before Me.) Think of it this way, back in the day white actors sometimes wore black-face to portray black characters, but that would never be appropriate now. This is really another conversation for another day with a lot of nuance, but long story short, it's really great to see a disabled actor playing a disabled character on TV. And on a sitcom!

The second reason is I love Speechless is I AM THAT MOM. This show nails the special needs experience in so many ways and for me the over-protective, out-spoken, ready-to-advocate-at-the-drop-of-a-hat mom is so very relatable. When I said this to one of my best friends she said, "No! You're not crazy like she is." And I was like, "Oh, she's not crazy. She's a special needs mom."

Friday, February 17, 2017

Special Needs Spotlight || Ryder

Hello All! I am Meghan. Mama of Ryder (almost 5!) & Gunner (2), and wife of Matt. My husband and I met in high school and got married in 2009 (not really high school sweet hearts, but definitely a typical Midwestern love story ). My husband was serving in the Marine Corps at the time of our marriage, so I moved to Virginia in 2009. After 2 years there, my husband received orders to Southern California. Around that same time, we found out we were expecting Miss Ryder May (insert all the heart emojis!!!!) We moved to California in 2011, and Ryder was born in 2012. After his third deployment, my husband decided to separate from the military. We left sunny San Diego for Scottsdale, Arizona. About three months into our life there, Ryder had a seizure that embarked us on an emergency move back to Cincinnati. For the past 5 years we have spent countless hours searching for an answer to Ryder’s delays. In November of 2016, we got our answer. Ryder was diagnosed with Asparagine Synthetase Deficiency Disorder. She is one of around 19 reported cases in the world, and the first ever at Cincinnati Children’s Hospital. In my spare time I enjoy sleeping, eating chocolate, wandering aimlessly in Target and catching up on Grey's Anatomy!


Miggy: Hi Meghan and welcome. Thank you so much for sharing your journey and your sweet family with us today. So can you take me back to the day you knew something wasn't quite right with your daughter, Ryder? Was it during pregnancy, shortly after birth or sometime after that? If it was a little later what were some of the red flags and how long did it take to get a diagnosis? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Meghan: I cannot really pinpoint when I knew something was wrong with Ryder. This is going to sound bad, but maybe closer to 3.5 or 4 years old?? The first few years of her life are a blur. My husband deployed when Ryder was 7 months old, and returned until she was 15 months old. From birth, we were in and out of the hospital with reflux issues that remained undiagnosed until she was about 6 months old. She was 10 pounds, failure to thrive at 6 months old before her doctors finally put her on reflux meds. I thought until she was about 9/10 months that she “had a rough start” due to the reflux and failure to thrive and that she would catch up with her peers. Around this time we did an MRI, due to developmental delay and small head circumference, where we found out she had white matter volume loss in her brain. The MD told me “It’s just not as white as it should be. We expect her to continue to gain skills just at her own pace.” I left thinking she would just be behind. I was a 27 year old, clueless as anything, first time mama.

Her seizures began a few months later, and they ran a genetic test called microarray to rule out a genetic disorder. That test was negative. In a nutshell they told us to enroll in therapy and continue life as planned. We treated Ryder like a “normal” kid, and still do. We did all the therapies, skills came but were slow. I remember saying, “She will walk by two”. Well she crawled by 2, but is now almost 5 and still doesn’t walk. In July of 2014, Ryder had a well check with a new pediatrician in AZ. As soon as she walked in she asked, “Have you ever heard of Angelman’s Syndrome?” I said, “No!”, and dismissed her ideas as craziness. In August of 2014 an absence seizure. The doctors in Arizona sent us to a rare disease specialist. The first thing he said to us was ““Have you ever heard of Angelman’s Syndrome?”. He wanted to run genetics testing for the disease. We decided to move back to Ohio to be seen at CCHMC. They ran two Angelman’s test, both were negative. When the seizures continued and all test were negative, I asked to switch Neurologist. At this point I really realized that something was off. She was not getting worse, but not getting better and this would be lifelong. We could no longer continue thinking that this was going to get better or be “fixed.”

We met a neurologist, Dr. Franz who has changed Ryder’s life, and has kept me sane. At our initial appointment with him I told him I needed him to be honest with me and tell me what life with Ryder would look like. Everyone else gave a cookie cutter answer in the past. He said that Ryder would be dependent on us her whole life, but he expects her to walk, communicate, have friends, learn, have a job with assistance. He said the take away is not what she can’t do, but what she can. He said her life has meaning, and purpose. There is a reason why she is here. Focus on the good. I will never forgot that moment. Whether it was the moment I came to terms with the fact that there was something wrong, or the moment it all came full circle, I don’t know. I do know I am forever grateful for that moment in her journey.

I am a completely different person now than I was at the beginning of all of this. I am a chatty Kathy, but I internalize a lot of things when it comes to Ryder. It is painful. I remember being so scared and almost embarrassed to tell people about her struggles. Aside from our family and close friends, I did not publicly announce Ryder’s journey until 2015. I have never been ashamed of her. She is a damn rockstar. I always felt like it was my fault, or that I caused her issues somehow. Now, I just tell people who she is, and how far she has come. We are hopeful for her future, and she has a team behind her that is rallying for all her success.

Miggy: As you told me in your email, Ryder's condition is super rare--as in she is 1 of 19 people in the world with this condition. Can you educate us on your daughter's condition and explain how her needs affect your day-to-day life?

Wednesday, February 15, 2017

Read || On Granting Permission

I used to watch the show What Not To Wear on TLC. You know, the make-over show with Stacy and Clinton. But saying that it was a "make-over" show implies that it was perhaps shallow and superficial--like the hosts just slapped some fashionable clothes on some unfashionable people and called it good. I don't think that's how it went.

Please keep in mind that this is not really what I want to talk about, but we have to talk about this for a second first.

So What Not to Wear (or WNTW hereafter) was a valuable show in my estimation that provided a substantial service both to the viewer and the participant. (An anomaly in the world of reality TV.) While WNTW was a make-over show it was so much more than clothes, a good haircut and a make-up lesson. It was about helping people do this thing that my friend Stasia, a stylist, does really well--something she calls inside outside congruency. Stacy and Clinton helped people match who they were on the outside, to the person they are on the inside. I believe it is also encapsulated in the idea of Look good, feel good, do good.

I don't think it's too much to say that for some people the experience was life changing.

I have always believed that the physical world and the spiritual world go hand in hand, and are meant to enhance each other. Yes, inner beauty matters most, but I also believe our outer selves can be a reflection of our inner selves, and vice versa. (Obviously we could go on and on about the importance and influence of design, art, music and beauty in general--but I'm keeping it basic here.) Of course there will always be examples where these two ideas don't match up at all--a beautiful person who happens to be a terrible human being, or a very uncomely person who has a heart of gold. I want to acknowledge those extremes while also reminding you that this is not really what I want to talk about.

What I want to talk about is the word permission. Time and time again as I watched WNTW the word permission constantly came into my mind.

WNTW hosts, Stacey and Clinton were teaching people how to dress their body type, they were teaching them about clothing and fashion, and they always gave them a set of rules to follow, but they also gave them this really big gift called permission.

Friday, February 10, 2017

Special Needs Spotlight || Ruby

Hi Everyone! My name is Stephanie and I am married to my highschool sweetheart Daniel. We both went to college together, graduated and then got married. We currently live in Huntersville, NC but plan to move to Denver, CO this summer. I love coffee, consignment/thrift shopping, cooking and Netflix. My hubby is in IT and likes Star Trek, anything with bacon and enjoys traveling. We have two daughters, Evelyn (9) and Ruby (5). Both girls love swimming, skiing, and arts and crafts.


Miggy: Welcome Stephanie! Thank you so much for participating in today's Special Needs Spotlight. Let's start at the beginning, you adopted your daughter, Ruby, when she was 2 years old and presumably you already knew about her needs. Did you intentionally want to adopt a child with special needs or did you simply know that your daughter was meant to be with your family regardless of needs? Most of us special needs parents don't choose this path beforehand and often there is a lot of fear in the beginning. How did you feel in regards to her additional needs? Can you compare those first feelings with how you feel now?

Stephanie: Hi Miggy. When we first decided to adopt, we almost immediately knew we wanted a little girl from China. My parents have friends whom had adopted a little girl from China and she was the flower girl in our wedding. It just felt right. So we started to do research and discovered that to adopt a “healthy” child from China would take 5-7 years. We didn’t want to wait that long, so we chose special needs. Our oldest daughter had some medical needs/complications the first few years of her life so we felt called to adopt special needs.

While Daniel and I were still completing the adoption paperwork, we got a phone call from a woman at our agency. She said they had this program called Special Focus and asked if we were interested. Special Focus is a program for children with what they considered severe needs. The orphanages in China try to match these children with families as soon as possible. Daniel and I immediately said yes to the woman and she said “Great! You have been matched. I’m emailing you her profile right now. You have 48 hours to decide if you want to adopt her.” We were shocked. We still hadn’t completed all the paperwork to adopt, but we were matched.

We spent the next 48 hours reviewing her very small profile and medical report. We sent her information to our pediatrician for review. But, if I am real honest… the moment we opened that email, we just knew. She was our daughter. It didn’t matter what her needs, she was ours. Her needs didn’t scare me or worry me. I just wanted her home. We were ready for her to be home. My feelings about her needs have changed since she has been home. I’m still not scared but I do worry. Like all the time, but that is part of being a mom. I worry so she doesn’t have too. It’s my job to protect her. It’s my job to advocate for her.

Miggy: Will you please educate us about Ruby's condition and explain how her needs affect your day-to-day life?

Wednesday, February 08, 2017

Read || Opportunity + Other Lessson from Alt

On a recent trip with my brother he talked about getting himself out of trouble and onto a good path in his life. He told me, "I can say one thing for sure, I have taken every opportunity that has ever come my way." That has stuck with me and became a bit of a mantra lately. Take every opportunity that comes my way. 

Last week, as many of you know, I went to Alt Summit. Alt is a conference for bloggers, designers, and entrepreneurs in the creative space. This is the 4th year I've gone to Alt and I love it, in a very nerdy sort of way. I am the Hermonie Granger of Alt Summit--I go to every class, on time, sit in the front, take copious notes and talk to the teacher afterward for clarification. I freaking love it. 

I have always looked at Alt Summit as one big opportunity but this time, with my brother's advice ringing in my ears, I really took it to heart. Take every opportunity that comes my way. 

Here are a few things I took away from Alt this year. Some of it is from the speakers and some from my own experience. The great thing about good advice is that it is usually universal and can be applied to nearly every situation. Blogging, design, life, whatever... good advice is good advice.
Get Uncomfortable
"Only when you get uncomfortable does change happen." That's a little quote from my favorite trainer Jillian Michaels, but again this is LIFE.