Friday, May 19, 2017

Special Needs Spotlight || Kuba

Miggy: Welcome Cydney! So happy to have you here today sharing your beautiful family with us, especially your son Kuba. Let's start at the beginning, can you take me back to the day you knew Kuba would have special needs? Was this in utero, shortly after birth or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Cydney: I had no idea there were any issues while I was pregnant. My pregnancy was normal--I felt great, and even rock climbed through my 8th month of pregnancy! Birth was normal and there were no indications that anything was wrong until after Kuba was born. Early feeding issues, and abnormal blood tests sent us to the NICU for his first two weeks where they ran the whole gamut of tests. A week after we came home, we found out that Kuba had a genetic mutation--triplication of 1p36.31-33. This was incredibly rare, and they couldn't give us any information about it. This entire journey was very tumultuous. All the time we were in the NICU, my husband and I took turns googling the newest disorder the doctor was testing for and became overwhelmed with grief for what it could mean. It was a complete roller coaster.

About a month after our diagnosis, I got a call from Kindering, our local early intervention program, asking if we'd like to come in for a consult. When the caller explained that Kindering was a birth-3 program for children with special needs, I became very angry and said that my son did not have special needs and that we would not be needing their services thank-you-very-much. Needless to say, this was a big pill for me to swallow. I was angry and hurt for quite some time and my husband and I both had a really hard time talking about it. I felt cheated and betrayed. Not to mention that I felt guilty, wondering if it was something that I did while pregnant despite assurances from the doctor that this was not the case.

It has been a long road, but I have found peace, healing and acceptance--ironically through Kindering, They did such a great job holding my hand through those tender first years. In addition, my saving grace was finding a local group of special needs mamas on Facebook. Besides being a WEALTH of information and resources, these moms get together twice a month for mom's night out. It has completely changed my perspective and feelings about having a child with special needs, and gave me a community that could understand what I was feeling.

Miggy: Your son has a very rare disorder, could you educate us about this disorder and explain about Kuba's needs and how they affect your family’s day-to-day life?

Cydney: Kuba has a triplication of 1p36.31-33. What that means is that on chromosome 1, the p-arm, band 36--he has three of genes 31 and 33 instead of just one. My husband and I were both tested for the same mutation and we were both negative, so they conclude that this was a spontaneous mutation during development. When meeting with the geneticist, we were told that there are no documented cases of a 1p36 duplication, let alone triplication. I have since found a small but growing Facebook support group with moms of 1p36 duplication kiddos, so we been able to connect, compare notes and try and gather data--hoping to get recognized. I am actually working on trying to find someone at UW to take Kuba on as a research project.

Wednesday, May 17, 2017

Land Of Nod Winner Bedroom Makeover

Special Needs Room Makeover Before + After || This Little Miggy
A few years ago I worked with The Land of Nod to create a beautiful and accessible bedroom for our two oldest girls, PSP and Lamp. The Land of Nod was so amazing to work with and the room has been one of my favorite spaces in our home ever since. Additionally, The Land of Nod also hosted a $500 gift card giveaway for This Little Miggy readers + special needs families. I was thrilled when winner Sar emailed me a few weeks ago to tell me that they had finally finished making over her son "Coe-Coe's" room. You guys it looks amazing! Not only is the room beautiful, but I also loved the ingenious design solutions they came up with to create this safe and beautiful place for their son Coe-Coe. Good design can be used to solve so many problems. I especially love when I see good design + disability coming together to create beautiful and functional spaces. Here is Sar to explain a little about her son Coe-Coe, his needs and the process of his room makeover. You can see more over at her blog Snippets and Smiles.

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At 10 months old, "Coe-Coe" started having 100's of seizures a day. His local Drs did not know what was causing them. We did a lot of research after hearing how amazing the Cleveland Clinic Epilepsy Unit was and decided to take him there when he was 2. We found out his brain didn't fully form on the left side, which was missed by our local Children's Hospital. He had brain surgery to remove his Left Temporal, Occipital & Parietal Lobes. He is now 8 years old and is non-verbal, as well as a lot of behavior and sensory disorders. Because of his behavior we wanted to create a Bedroom that was SAFE for him.
Special Needs Room Makeover Before + After || This Little Miggy
He doesn't know how to process his feelings or tell us what he wants...so he head-bangs the walls, which creates GIGANTIC HOLES in the walls & also exposing the electrical wire...we had to come up with a solution FAST! We decided to reinforce the walls with Shiplap. After doing that, he hasn't hit his head on the wall because it's not as soft as dry wall.
Special Needs Room Makeover Before + After || This Little Miggy
Special Needs Room Makeover Before + After || This Little Miggy
Originally we were only going to Shiplap the 2 walls that had huge holes in them, but once we put the boarding up, "Coe-Coe" figured out that the walls were too hard to hit so he went after the other walls...so we needed to fix those as well. I didn't want the whole room to be Shiplap, so we put boarding on the other 2 walls and added "texture" over it to look like a typical sheet rock wall. We also needed to board over the doors because he's a smarty pants and figured out those were softer. Once we boarded his hole room and the surfaces we're indestructible, he wasn't interested in hitting his head anymore...so it actually solved the problem!
Special Needs Room Makeover Before + After || This Little Miggy

We are in LOVE with the way his room turned out!!!! Our family actually spends more time in his room then any other room now, and I think "Coe-Coe" likes that we are all gathered in his room.

Friday, May 12, 2017

Happy Weekend

I put out a call for spotlights on Instagram this past week and have already had a great response! I'm excited to get some new spotlights out to you ASAP. It's always a lot of work, but really the best work I do here on the blog. I can't wait. I've had a super lazy morning so far... help get the older kids off to school, but a show on for Zuzu and lay back in bed a bit lazy. Sometimes you just gotta do it! We're going to be working on the garden this weekend, but other than that and Mother's Day, it's going to be pretty chill. I know I don't usually do a link roundup, but I actually love a good link round up so I'm going to give it a go since I don't have a spotlight this week.

I've been wearing this shirt on repeat these days (and it seems like everyone comments on it everywhere I go.)

Funniest thing I've watched in a while.

Woa.

So cool to see your friends featured on big time sites, especially when it's for their greatest accomplishment.

One of the best things I've read lately. Long but worth the read.

Made me smile and tear up at the same time.

Went to this last year and it was magical...thinking about going again. Anyone else ever been?

Digging this new lifestyle platform specifically geared toward special needs families.

Mother's Day for the mothers with an aching heart.

Also, how to celebrate Mother's day if you have a toxic mother.

 Thinking about getting these classic and nostalgic shoes for summer.


Hope you have a good weekend and see you back here next week.

XO,
Miggy


Wednesday, May 10, 2017

Should Grown Women do Solo Photoshoots? Would You?

Palm Springs Photo Shoot || This Little MiggyThis past January I attended Alt Summit (a blogging + design conference) in Palm Springs, California. Shortly before the conference a photographer named Lindsay of Wild Wonder Photography asked people in the Facebook group if they'd like to do a photoshoot with some vintage style frocks she was bringing. I said YES.

The Saguaro Hotel (where the conference was being held), and all of Palm Springs for that matter, has a classic mid-centruy feel that is hard to match anywhere. If you love mid century style at all Palm Springs is a must see. Having been to Alt before I knew that the schedule would be hecktic and that I may not exactly feel like getting up super early on the last day, doing my own hair and make up (yes I did!), and then posing in front of a camera (I'm not a natural!), but I am SO GLAD I DID.
Palm Springs Photo Shoot || This Little Miggy
I just got the photos back a couple weeks ago and I love how they turned out. At the same time I have no idea what I'm going to do with these photos-ha! But obviously they have to make an appearance on the blog. And while the idea of blowing one of these up and hanging it on the walls of our home feels Kardashian-level vain, I also think they're so unique and cool that I just might do it.

As I mentioned I'm not a natural in front of the camera. I often have this weird facial twitch and I get this one dimple that looks like a mole and I swear it only comes out when I'm feeling really nervous in front of the camera. But something about the whole setting--the dress, the hair and makeup, the Saguaro and the photographer Linday--really made me come out of my shell and I felt totally comfortable. That and the advice I had heard the day before that "no one is going to be offended if you take a good picture."
Palm Springs Photo Shoot || This Little Miggy
The cool thing is that these photos were taken about 3 weeks after I turned 40, and since I've never been to Palm Springs and I have no idea when I'll go back, it really felt like a once in a lifetime experience. The setting, the scenery and marking the entrance into my 40's.

It's completely normal for babies and kids to have their photos taken at frequent intervals, usually because they grow and change so fast we want to document every little moment. For some families, ours included, getting frequent family photos is common to document the growing stages of your family. But what about a solo photoshoot as an adult? Obviously, this is not a completely unique experience for us bloggers, but I've still never done a photoshoot quite like this. Would you or have you ever done a solo photoshoot as an adult just because? Maybe to commemorate a milestone birthday or even just for fun? While I did a maternity photoshoot a few years ago that I loved, this kind of photoshoot still feels very different. It's not about a growing baby, it was all about me.
Palm Springs Photo Shoot || This Little Miggy
Like I said, the idea of enlarging, framing and hanging one of these in our home makes me feel a little self conscious--like will people think I'm super vain? Is it over the top? Will my own family think it's weird? (I haven't asked them yet.) The other thing is that even talking about liking a photo of ourselves is usually seen as a big no-no for women. But the truth is I really like these photos of myself for all the reasons mentioned above, but also because they stand as a reminded that when I say yes to an opportunity, good things can happen.

What about you? Would you ever consider doing a photoshoot like this for yourself, just for fun? I admit that if the opportunity hadn't arised, I would have never set this up myself, but now it's got me thinking of other cool shoots I or my family could do. Maybe if you have a budding photographer friend you could discuss something like that. Second, how do you feel about saying outloud, "I like this picture of myself!" Do you ever do that, or feel that way? Would you hang a picture of yourself in your home or would you feel vain/self conscious if there weren't other members of your family in the photo?

Friday, May 05, 2017

Spotlight Revisited || Celia


I originally featured this spotlight on Celia a little over 4 years ago and have never forgotten her story. Probably because Celia was the first spotlight I did for a child who had already passed and I always consider these interviews to be a sacred and holy responsibility. If you have a few minutes I urge you to read through and read the tender and wise words of Celia's mom Jenni. Original post here.

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Hello readers. Today's spotlight is an extra special and extra tender one as this is the very first posthumous spotlight I've ever done. I am so thankful to Jenni for reaching out and wanting to share her beautiful Celia's story. If you've been reading the spotlight for a while you'll know that there are so many different kinds of special needs out there, and while it is rare, yes there are even children who die as a direct result of a rare genetic disease. (I specify genetic here, because there are children who die from illness and sickness too--also diseases. While no less tragic, I just want to point out the difference.) Please take the time to read Celia's story. It's heartbreaking yes, but poignant and full of beauty too.

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Andy and I met as preschoolers, more than thirty years ago. We dated in high school and were married shortly after college. We’ve lived in central Ohio since then, where Andy has worked with the trauma team at a large downtown hospital while I taught fifth grade for a number of years before Celia was born in 2007. These days we stay busy keeping up with Celia’s younger brothers, Tucker, age four, and Tolliver, one.


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Miggy: Jenni this will be my first posthumous spotlight. I am so honored to be interviewing you and talking about your sweet Celia. Let's start at the beginning. As Celia was born seemingly healthy, do you remember those first red flags that something wasn't right? How long did it take to get a diagnosis? Can you take us back to that difficult day?
Jenni: Celia was our first child. Had she not been, it’s conceivable that we’d have noticed symptoms sooner, but she was well beyond her first birthday before we worried. In hindsight, a few of the things we thought were part of her personality may have been signs – sometimes she tilted her head to look at things, for example, and instead of wondering whether her vision was impaired, we affectionately called her “Sideways Celia.”

When she was about 15 months old, we felt uneasy – she had a good vocabulary for that age, but as she started to walk, she stopped talking. That might be dismissed as normal development, but she never recovered her words. And she never learned to walk well. By her 18 month well-visit, we expressed concerns to her pediatrician and were persistent enough to get a referral for a developmental evaluation. Celia underwent an MRI and although the developmental specialists spent an entire day evaluating her, the results of the MRI gave them clear information – Celia’s brain was dying. We were referred to a neurologist, who sent for test after test at lab after lab. The neurologist actually called it a “fishing expedition.” Finally, the results for the last test the doctor could think to try came back, shortly before Celia’s second birthday. She had the infantile version of Neuronal Ceroid Lipofuscinosis, commonly known (although it’s actually NOT commonly known) as Batten Disease.
Miggy: In your first email you told me that February 28th is World Rare Disease Day and that Batten disease is rare, but not rare enough. Please educate us about Batten disease--how does it affect families, is it always terminal, are there any treatments? How can we help?

Jenni: There is no effective treatment and no cure for Batten. It is always fatal. You can imagine our family feels very helpless in the fight against it – the only thing we can do is raise awareness and hope that funds for research might follow. Batten disease follows an autosomal recessive hereditary pattern – an affected child must receive a faulty gene from both parents. Sadly, many families have more than one affected child. Celia had the infantile version of the disease, with the most rapid progression, but some forms of Batten do not manifest until a child is school age. Children with Batten suffer progressive, permanent loss of motor and psychological abilities. They have seizures and become blind and bedridden. Batten steals time and squanders possibilities. The Batten Disease Association describes it by saying, “it takes the childhood and then it takes the child.”

Tuesday, May 02, 2017

Miggy's Favorite Things Lately



Hi! I thought it would be fun to start a new series where I share some of my favorite things I've been enjoying lately. Something to wear, something to read, something to watch, something to eat. Feel free to leave any of your favorites below and I'll check them out!

wear: I've been on the hunt for a well worn pair Levi's 501's in thrift stores for a while to no avail. The search is over! Anthropologie is now stocking them. Classic, no frills, boyfriend style denim with a higher waist and button fly. They have a few different 501 styles right now, but these are the ones I have and love AND all denim is on sale right now! Run, don't walk!

read: I read A Man Called Ove a few months ago and loved it. I'm a big believer that "truth is stranger than fiction" and typically turn to nonfiction for my reading pleasure. Additionally fiction can sometimes feel frivolous unless it's very well done and I come away feeling like a better person for having read it. I feel like a better person for having read this book. Also, the movie was equally as charming and up for an Oscar last year for best foreign film and is free with your Amazon prime membership! But please read the book! As usual, it's much better.

watch: Hunt for the Wilderpeople is one of the best movies I've watched in a long time. Hits the exact right note of quirky, hilarious and yet poignant. It didn't look like a movie I would like, but I loved it. Don't watch the trailer--those things just give too much away--just watch the movie and thank me later.

eat: I've been addicted to these Dark Chocolate Crack Cocaine Sea Salt Cashews from Ghirardelli. I don't even usually like Ghirardelli chocolate OK? But these are a game changer. The only down side is that these bags say they're about 3.5 portions in them, but I tend to inhale them as if they are single portion size. When I say addictive, I mean addictive. You've been warned.

Thursday, April 27, 2017

Limb Difference Awareness Month || What's Really Wrong

This Little Miggy || Limb Differences Awareness Month
What's wrong with you?

What's wrong with you?

What's wrong with you?

Staring. Staring. Pointing. Whispering.

What's wrong with you?

Imagine being asked that question on a semi-regular basis. Now, imagine being asked that question on a semi-regular basis, by complete strangers. Finally, imagine being asked that question on a semi-regular basis, by complete strangers, and you're only 6 years old.

What does that do to a kid? What does that do to a person over a lifetime?

I don't know, but it's been on my mind a lot lately. I'm not just worried about what that does to a kid or a person... I'm worried about what it will do to my kid, my person. Because this is my daughter's reality.

Over the years I've shared our journey of fear to love and I've tried to talk really positively about disability, because I feel positive about disability. While I agree that disability can still be a complicated issue--for example, I certainly would have a hard time if I lost an arm or the ability to walk and some families do struggle more under the weight of caretaking and the medical costs--I no longer view disability as inherently negative and I certainly no longer see disability as an inferior experience in the human condition. A person in a wheelchair in not inherently inferior to a person who can walk. A person with intellectual disabilities is not inherently inferior to a person with a higher IQ. From day one I have always tried to communicate the love, the humanity and even the normalcy of disability because disability is normal part of life.

But sometimes I fear that I've sugar coated it. Specifically I fear that I've sugar coated what it's like to have a child with a disability in a world where disability is rarely represented and if it is, it is most often seen as inferior, sad, undesirable, and wrong.

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It occurred to me recently that my identity as mom is most often preempted with special needs mom. I am a "regular" mom too but in the context of motherhood, I can never seem to shake the "special needs" prefix. Do I care more about being a special needs mom than a regular mom? Does everything that comes out of my mouth have to be about disability or special needs? Why is this badge of special needs parenting so important for me to wear all the time?

I sat on these questions for a few days recently.

And during this time we went somewhere as a family and there was a little boy who started saying things about Lamp that were rude-ish. I don't remember seeing his family anywhere, and in fact I barely remember this situation. It's all blurry around the edges because I've dealt with it a hundred times before. (Note: I was going to say a million times, but then I thought "I don't want to exaggerate." So I said a hundred times and now I've underestimated.) But once again I had to educate this young boy while at the same time protecting my daughter's feelings and sense of self.

As soon as that exchange was over I immediately thought to myself, Right. That's why.

Motherhood asks a lot of us. I remember being a mom before I was a special needs mom and it was hard and wonderful and soul-stretching all on it's own. It truly was. But being a special needs mom asks more of me. Strangely, it's not in the ways I thought it would be.

It's not hard being Lamp's mom. But it is hard being Lamp's mom in a world that doesn't acknowledge her or people like her on a macro level.

Because when we don't acknowledge people who are disabled by having them in our TV shows, in our magazines, in our children's books, in our commercials, and more importantly in our classrooms and workplaces, then we often have an overabundance of acknowledgement on a micro level, particularly when we go out in public. People--typically other children, but also adults--point, stare and whisper because they have literally never seen anyone like her before.

This Little Miggy || Limb Differences Awareness Month

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