Friday, January 30, 2015

Special Needs Spotlight: Lily

Hey you guys!  Welcome to today's spotlight where single super mom Delia shares her story of raising a child who appears healthy on the outside, but on the inside she is anything but.  This is one of those interviews where I proverbially stand back in awe at the strength of a single mom to handle so very much by herself.  Delia is very inspiring and has some great words of wisdom for all of us.  Enjoy.


Miggy: Delia, thank you so much for being here today and sharing your daughter Lily with us.  Lets start at the beginning. Can you take me back to the day you knew Lily would have a congenital heart disease? Was this at birth, during an ultra sound or sometime after she was born? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Delia: It happened at the first appointment with the doctor.  I was laying there and the poor technician couldn't find a heart beat then she would, only to change her mind and say that it was my heart beat.  I was alarmed, but calm. Finally the doctor came into the room and started moving the little wand around and found the heart beat. She said, "Well we found it, it's low, but we found it....You will need to follow up with a specialist." That's all she said.  She didn't know anything and wouldn't tell me anything.  She did say that otherwise the baby seemed just fine.  I was still calm after she told me. I think I was in a daze, I didn't really understand what she meant.  Today I see Lily and I'm still in a daze.  I'm shocked at how much she has grown and defied the odds placed against her.  We've grown together.  I have learned to be accepting of help, that I alone can not do it all.  I have learned to not be so fearful of the unknown and to trust that God has plans for her.  That she will have a full and happy life.

Miggy: Could you explain Lily's particular heart condition and how it affects her and your family's day-to-day life?

Delia: If you were to see Lily today you wouldn't know that she has a life threatening disease. She loves to laugh and play and run with her friends. She is independent and loves to say she is the boss! Lily was born with several complications. They are: Endio-Cardio Cusion Valve Defect, Sick Sinus Syndrome, Dextrocardia, Inverted AV Canal, Pulmonary Hypertension, and Sleep Apnea.  Lily spent nearly two months in the NICU, then we spent many, many nights in hospitals, countless doctors visits.  Keeping up with her medical needs was and still is a job in and of itself.  The first two years I couldn't hardly hold on to a job.  I spent so much time and money on my daughter that I lost track of myself.  My life revolved around her and only her. Lily underwent her open heart surgery.  She was in the hospital on 06/23/2010 and wasn't released until 07/20/2014.  Her surgery was only supposed to take about four hours, six hours later I finally was told she was headed to ICU.   As time went on, things became routine. Hospital stays every two to four months. Upper Respiratory Infections that never seemed to go away. I started getting assistance though SSI nursing hours.  Finally there was someone to help with medications, feedings, changing gauze, organizing all of her supplies.  It has been a blessing.  One I would trade in a heartbeat for my daughter to be healthy.  Until last month (Dec. 2014) she had not been able to eat solid foods well.  She would take bites of things but struggled to keep her food down and struggled to eat large portions.  Now she is eating good portions and has discovered the joy of carbs! I enrolled her in Dance for the first time last fall.  She was clearly behind her peers in gross motor skills, but learned and was able to participate in her dance recital.  She is back in dance this season, and I recently registered her for t-ball in the spring. This school year she started Pre-K and has LOVED it.  I want her to enjoy life. Although I can't afford everything (who can?) I want her to try new things, create new memories and be as happy as she can be.

Miggy: What are the biggest worries you face for Lily?

Delia: I worry that I won't be there when she needs me.  Perhaps that's an irrational fear, after all she is my life. But I worry that the day will come when I can't help her...when the ER is too literally brings tears to my eyes knowing that she will one day go into cardiac arrest and I will be helpless to save her.  I've raised her like any other child, I didn't want her growing up thinking that life would come easier to her because of her disability, or that rules don't apply to her.  I am her advocate.  I ensure that the things that she needs are there for her.  Lily is a strong, resilient, and brave little girl.  But I can't help but worry about the end, and pray that day doesn't come any time soon.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Delia: Although Lily does ask me questions about other people with disabilities like prosthetic limbs, she doesn't seem to think of herself as having a disability.  She knows that not everyone has a g-tube. Or a Bi-PAP machine with oxygen tanks but she is always very curious about others.  Lily doesn't seem to be overly bothered by people asking her about her "special features" like the g-tube.  In fact her teacher called to tell me that Lily had shown the class her g-tube and explained what she used it for.  Lily is far more obsessed with having a dad. Once a year or so ago, she said: "mommy I want a daddy...can we go to the store and buy one?" I told her I didn't know where that store was.  Yesterday she got off the school bus, and instantly started saying she wanted a daddy and if we could get one...I told her no, they are too much trouble! The bus driver laughed and laughed at our conversation. I just shake my head.

Miggy: How can people best approach or respond to Lily and the rest of your family? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Delia: In general I think that people forget that disabled or not she is just a child.  All small children are just that children.  They hurt, they get cranky, they are loud, and they are just doing all they can to survive and enjoy as much of this life that they can.  I can't stress the importance of not jumping to conclusions.  It would seem that so many people see Lily and assume that she is fine. She doesn't have anything connected to her at all times and her disability doesn't affect her physical appearance.  She's articulate and hyper, so what's wrong with her? There is a slogan for cancer patients that says: Just because I don't look sick doesn't mean I'm not. It's true for so many children and adults.  If I'm over protective or over concerned with her actions it's because I'm looking for signs: of fatigue, loss of oxygen.

Miggy: If you could say something to the mom who just starting on this journey of congenital heart conditions, what would you say?   What would you say to yourself if you could go back in time?   

Delia: I'd say take it one day at a time, enjoy and embrace the little victories.  Life is so precious and short.  This last year has been a struggle.  I keep my focus on God, and on Lily.  I know that there are darker times ahead, and I just need to hold on to the light I do have today.  Some days are going to be rough, so rough you won't be able to stop crying or to want to get out of bed.  Talk about it.  Talk to your family, friends, and let it out.  It's not about being rational, or logical, none of this is rational or logical.  It's about finding your peace with it.  Accepting it, because it isn't going away. Loving yourself.  I have forgotten about me too many times.  If I hadn't started receiving home health care I would have lost my mind years ago.

Miggy: What is the biggest lesson you’ve learned since becoming Lily's mom?

Delia: I've learned that Life is not a guarantee.  Today is just as precious as tomorrow and there is little that you can do to change the outcome of yesterday.  I've learned that I am not as strong alone as I am with those around me who love me and care about both Lily and I.

"Today is just as precious as tomorrow and there is little that you can do to change the outcome of yesterday."  I love that.  So, so true.  The ever present now is so important.  And I had to laugh out loud when you said that husbands are too much trouble while the bus driver laughed and laughed.  Kids!  And once again you reminded us to try our very hardest not to judge anyone really, but especially parents and their children.  We just never have any idea what's really going on behind the scenes.  Thanks so much Delia and giant hugs to you and your beautiful Lily.  

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com!  If you already emailed me and didn't hear back, send me a quick reminder...sometimes that happens.  

Have a fantastic weekend!  

Thursday, January 29, 2015

Would I Still Do It?

I posted this picture on IG the other day with the following caption:

I am brave because I keep sharing even though I'm not sure it's making a difference.  I am brave because I strive to meet stares, uncomfortable situations and rude comments with kindness and understanding, and I try to teach my kids to do the same as well.  Oh how it would be so much easier to label every outsider as ignorant and offensive, but in my heart of hearts I don't believe it's true.  Finally, I am brave because I'm learning that vulnerability is the mark of a strong heart.

I was tagged by a couple of friends and asked to complete the sentence I am brave because... for the We Brave Women project.  In regards to the first sentence, many people commented telling me how I've made a difference in sharing my story and the stories of others, referencing the special needs spotlight and other special needs posts. I was so grateful for everyone who commented to tell me that I have and am making a difference. As much as I needed and wanted to hear that, I quickly wish that I had reworded my post saying instead '...I keep sharing even though I'm not sure it's making a big difference.'  The truth is I know I've made a difference to many people, you've emailed me, you've commented on posts both on the blog and Instagram.  I've even had a couple really special stories directly related to the spotlight that I always look back on to remind myself that yes, this little blog has made a difference.

So I sat there feeling bad about what I said, one because it came off like I was fishing (which I was) and two, I didn't want people to think I didn't appreciate their stories, their sincere thanks and gratitude.  Still I couldn't help shake the feeling that I hadn't made a BIG difference.

A BIG difference.


Bingo. That was it.

My blog has not reached the height and popularity I would have hoped for by now.  My Instagram followers are also small in comparison.  And while we're at it neither Oprah or Ellen has ever reached out to me to commend my work. What? While I didn't start doing the special needs spotlight to propel me to fame or recognition, I have definitely hoped my work would spread further than it has.  Because it is work.  Humbling, beautiful, and sometimes holy work, but work nonetheless.

Then in the back of my mind came a question:  What if your reach always stays small?  What if your sphere of influence never grows much larger than where it is now...would you still do it?  Would it be worth it?  

A few weeks ago I was flipping through channels on a Sunday morning.  Not something I often do since I'm usually at church, but being home sick I channel surfed.  Serendipitously I came across Oprah interviewing Timothy Shriver.  Who is Timothy Shriver? Well besides being the brother of Maria and the son of Eunice, he is also the current Chairman of the Special Olympics.  Perhaps you know that the Shriver family is part of the Kennedy clan, the closest thing us Americans have to royalty and that Tim's mother Eunice (sister to President John F. Kennedy) started the Special Olympics.  I don't know much about Eunice Shriver, but knowing that this woman who was born to wealth and privilege, turned her interests to one of the most marginalized groups in the world--people with intellectual disabilities--and started the Special Olympics in the 1960's (no less!), a time when, as her son points out, institutions for the intellectually disabled were still growing...well, she inspires and amazes me.

As luck would have it, I caught the interview with Tim early on and was able to record most of it.  Today, I went back to watch and remember some of what Tim said and found myself nodding along with tears welling in my eyes.  Oprah asks him, "What is it about special olympians? Why is it that going into that space for some people makes them so uncomfortable?"

His answer, "Well I think we're all afraid.  Think about who these people are.  They're not smart, by traditional definitions.  They're not rich by traditional definitions.  They're not pretty by traditional definitions.  They're not successful.  They sometimes look sick by traditional definitions.  They're all the things we don't want, that we're afraid of... Nobody wakes up in the morning saying I wish that for anybody.  So a lot of people go, 'Well I'm sorry that happened to you.'  You know one mother told me [that] she has 3 sons. Two work at big investment banks and the other has a severe intellectual disability.  She told me, 'Overtime people ask me about my sons and I tell them about my oldest who's in New York and I tell them about the second one who's in Chicago and then I tell them about Christoff who's at home, who I have to get out of bed every morning. And they always say to me, 'I'm sorry.''  And she said to me, 'Tim your life work is to tell them to stop saying that about my son. That boy is the light of my life and everyone thinks I should be afraid, that I should be sorry that I had this boy.  And he is magic.' 

Tim goes on to say, "If you have a baby what's the first thing you ask a doctor, 'Is the baby ok?'  Sometimes the doctor says 'No, baby's not ok.' And your world comes crashing in you know... like what is this child?  This child is not healthy, this child is not going to be whoever everyone thinks he should be... It's terrifying.  And yet we all feel that.  So we come to these games expecting to be sad, expecting to feel pity...And I always want to say... that pity, that fear that embodies that 'I'm healthy and they're not' I think there's a strength in vulnerability that only vulnerability knows.  You know I think in some ways the whole Special Olympics gamble is, Is there power in vulnerability and trust?  And I think the answer of our athletes is, There is only power in vulnerability and trust.  

I grew up [with everybody] in the spotlight...thats' where we all wanted to get to.  That's where you'd be successful.  And what I saw was that sometimes when the lights are the brightest, people feel the most invisible. I think sometimes where you think you want to go, is not the place where you will find your heartfelt, most meaningful, most purposeful life.  I looked around thinking I wanted to be like all those people in lights, and I found myself happiest in places nobody wanted to be."

The answer to my question came quickly.

Yes I would still do it and yes it is still worth it.  

There are definitely times I have wanted to quit the special needs spotlight (and sometimes blogging in general) or drastically scale back. And every time that desire hits I get an email or sometimes a phone call or in person conversation where someone tells me how much they love what I'm doing--especially the spotlight--and I get this little nudge to keep going. And so I do. While I'm by no means the only one blogging about special needs and in fact there are a couple of very well know special needs bloggers, in general it's not a glamorous topic.  I've even been told by some people that they find the spotlights sad and depressing.  Of course all the more reason to keep sharing, because I also see my work as removing the fears and stigma surrounding disabilities. I will always continue to blog about art, tutorials, and my family as well, but when it comes to my blog I have found myself, like Tim, happiest blogging about things nobody wants to blog about.

Up until now I always thought I was to keep going because at some point my blog would get a big break, a tipping point.  For the first time I'm realizing... maybe not.  I mean, maybe... but maybe not.  Maybe there is no big break, maybe this is as big as this little blog gets. Like so many people I have found myself wanting to do something great, wanting to make a big difference and have a measurable impact. Thankfully there are those throughout history who stand out as our great leaders, entertainers and policy makers. They are the people we build monuments to and write books about. But just as important, are the billions of humans who have moved along quietly doing the small and unremarkable work of everyday life that on it's own goes unnoticed, but all together is responsible for pushing open the doors on which the hinges of humanity hang.  Mothering, fathering, teaching, feeding, nurturing... what good are the queen bee's if we have no workers? And so when I wrote my I am brave statement a couple days ago I said it with the understanding that I knew I was making a small difference, but when was I going to make a big difference?  Some of is is selfishly motivated, but some of it is the fact that work just seems easier when there are big rewards attached. So now I find myself embracing a new sort of bravery.  A bravery that asks are you willing to do the work your doing now even if it remains a drop in the bucket in terms of making a difference? It's funny that I had never contemplated that before, but really I hadn't.  Again, the liberating answer was yes.

And now instead of expectations attached to the first sentence of my brave statement, I will simply say, I am brave because I will keep sharing.

Thanks to everyone who has ever let me know they read, love, support and have ever been impacted by this little blog.  It means so much to me. Gosh I hope this post came off right... anyone else ever struggle with this desire to do big things but a realization that perhaps the small, quiet things are actually more important, and may even be where your heart and happiness lie? Also, what did you think about those powerful words from Tim Shriver? You can see snippets from the interview here.  

Tuesday, January 27, 2015

Free and Amazing Modern Art

Looking for amazing and affordable modern art? If you have kids then you're in luck, as you'll have access to some of the best, most pure and free modern art ever! And if you don't have kids, you could ask your nieces/nephews or your friends kids if they'd make some drawings for you.  Still free!  Well...might cost you a sucker or two.

Now like most moms I face the dilemma of what artwork to keep and what artwork to throw away when it comes from my mini art geniuses. A while back I shared my system that works for us which includes making a digital art portfolio. But I also like hanging some of my kids more special work around the house. In fact in our living room gallery wall we have PSP's beloved flower above the ocean painting from preschool when she was 3 years old as seen below (far left).

Yesterday I finally framed these 3 pieces by Lamp and I love them! I love the pages filled with scribbles on a white background, with white mattes, in white frames on a white wall. Luckily these pieces made it through the move as these were done sometime in San Antonio when Lamp was 3.

The process of course was very easy. 1. Measure your child's art and 2. Go to Ikea (where I got my frames) or a similar store and buy the right size frame. Also, I LOVE using Command hanging strips to hang pictures around the home. No drills, no holes, no regrets. Seriously I just keep these on hand all the time now.

In regards to age, I think 2.5-3 years old happens to be the best age for amazing, free flowing, unique "modern" art. By 3 they have learned how to control their drawing instruments better, but they are still very unencumbered by rules or even drawing norms like houses, trees and stick figures. Don't get me wrong, I love those too! And find even though there is a commonality amongst them, they are still vastly unique. But there is something about the 3 year old mind that churns out really great art. And if you're one of those people whose not sure their kids scribbles count as art, you should check out the work of Cy Twombly. I love his work and these 3 pieces above totally remind me of Twombly--ha!

Now this is a more formal way to hang children's art, but thats what I love about it.  Putting a frame around these pieces instantly elevates them and they're right at home among other pieces of art and family photos.  However, I'm also wanting to create a place for them to hang art they like a little more freely, like a cork board gallery wall.

PSP had some of the most amazing, intricate drawings of roller coasters from when she was 3 and just last night I was KICKING myself again for not having her draw a roller coaster on one of my canvases as I had the idea of doing a collaboration. Sigh. That's some serious art regret there. I hope you're saving and treasuring these art pieces of your little ones--they're amazing as art, but also beautiful little time capsules around your home. And if you have an idea like me, act on it!  The time will be gone before you know it and you can't get it back. Tear drop.  Also, I think this is another way to let children know you value them and their work.  As an artist I know it would have meant the world to me if my parents had hung some of my work around the house.  But even if they don't grow up to be artists, or if it doesn't really boost their self esteem, I'd still hang it up simply because I love it.

How do you display your children art around the home--or do you?  Do you have a system for preserving their art?  Ever have any regrets over throwing art out or not enjoying it more at the time?  

Friday, January 23, 2015

Special Needs Spotlight: Raisa

Hey everyone!  Today I want to introduce you to my friend Stasia whom I met at Alt Summit last summer.  Stasia hails from Vermont where she loves with her husband and two kiddos.  She runs a blog and personal styling business called Thrift Me Pretty which stems from her love of sustainable, eco-friendly fashion (hint everything she buys is second hand!  Amazing!)  Stasia was one of those people who just has a glow and warmth around her that seemed to draw everyone in.  We instantly hit it off and she told me about her extra special kiddo Raisa and I knew we needed to do a spotlight.  And while we didn't plan it this way the timing seems a little perfect as Stasia is back in Salt Lake right now attending Alt's winter session.  So please take a few minutes and please read Stasia's wise words... I particularly love the story of her ah-ha moment with Raisa connected to her business as a personal stylist.  So good.  


Miggy:  Stasia thank you thank so much for being here today and sharing your story and wonderful Raisa with us today. So let's start at the beginning, can you take us back to the day you knew Raisa had special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Stasia: Oh yea, I remember.  We learned early on in my pregnancy that Raisa had multiple physical "anomalies" and were given a choice as to whether or not we wanted to continue the pregnancy. The decision was easy, though we didn't really know what to expect until she was born. My pregnancy was filled with anxiety and fear, though I did have some beautiful moments of pure pregnancy bliss. And then quite unexpectedly, my water broke 5 weeks early, and I was taken by ambulance to a larger hospital about 1.5 hours from my home.  Surprisingly, I was somehow able to let go of months of anxiety and fear and be fully present for the miracle of child birth. I was fortunate to have a lovely and nurturing natural childbirth with very little intervention, despite the labor and delivery room being filled with specialists, ready to resuscitate and respond if necessary.  The very moment Raisa was born, the neonatolgist whisked her away to do a full examination, even though she passed her APGAR test with flying colors. I didn't see her for almost 30 minutes.  When the doc finally brought her to me, swaddled tightly in her baby blanket, he hovered above me and very matter of factly presented me with my baby, and a laundry list of everything that was physically wrong with my daughter. I hadn't seen her yet, and his description left me absolutely petrified to even look at her.  Until I did, and she was absolutely perfect.  To be honest, when I look back at that moment, I would like to kick that doc in the knees.  Ok... maybe not THAT. But why didn't he say something like, "You're daughter is absolutely precious, congratulations.  Why don't you spend some time getting to know, and in a few minutes, we can talk about some of the things I discovered in my examination.  But right now, the most important thing is for her to be near you, so go on, hold her close to your skin and get to know your precious baby."  

Raisa's needs became more and more apparent as the days, months and years passed.  Our days were filled with medical appointments, hospital visits, surgeries, and discovery.  And absolute pure joy and marvel.  Raisa was the sweetest, most lovable, kind hearted, burst of love I'd ever met.  

And today, all that fear and anxiety has melted away. We still have "stuff". But if I've learned anything in the past 8 years, it's that everything's gonna be just fine.

Miggy: I know there was period of time where Raisa's needs were constant, with many, many doctors appointments.  Can you tell us how Raisa's needs affected your day-to-day life back then and how they affect your day-to-day life know?  

Stasia:  My life was completely devoted to my daughter's wellness for many many years. I did nothing but care for her. I stretched her tight muscles.  I massaged her camptodactylic fingers for hours every day. I drove her back and forth to Boston multiple times a month to meet with her geneticist, otolaryngologist, audiologist, cardiologist, endocrinologist, pulmonologist, GI doc, sleep disorders doc, neurosurgeon, urologist, cranio-facial doc, and/or hand surgeon, just to name a few.  I restrained her dozens of times for blood draws, swallow studies, nasal rinses, and wound packing.  I even pumped my breasts 6 times a day for 18 months because I was committed to my daughter receiving mother's gold.  I loved on her, snuggled her and played with her 1000 hours a day.  I gave her absolutely everything I had, until I couldn't do it anymore.

And that's been hard on Raisa. As she's gotten older, her medical need has dropped off dramatically.  And though in my mind I feel as though she doesn't need me in the same way anymore, she doesn't agree.  She misses mama's constant love and undivided attention, and it's a struggle the two of us are currently navigating together.

Miggy: What are the biggest worries you face for  Raisa?

Stasia: Oh geez. I guess I worry about kids making fun of her for being different. But this is a tricky thing, because I have to be careful not to project my fears onto her. If somebody made fun of her 4 fingered hand, it would crush me, but maybe it won't crush her. She does, after all, love her four fingered hand more than her five fingered hand because it's so "unique". And a few months back, a kid at school said something to her about being glad that HE doesn't have to wear hearing aids like she did, and do you know what she said... "You'd be glad to have them if you had hearing loss like me.  They're awesome and let me hear so much better."  She never took offense. Her feelings weren't hurt. And the kid did a total about-face. I hope, I hope to the moon and back that she can move through life with this sort of grace and confidence.  But undoubtedly there will be a time when somebody WILL say something mean, and I hope it doesn't break her.

Miggy: In addition to being a mom you also are a personal stylist and you have a fantastic blog where you write about style.  Your main message is to help people's outsides match their insides, matching their inner style to how they actually feel on the inside.  You have a particularly poignant story about your ah-ha moment in regards to this philosophy and your daughter Raisa.  Will you share this story with my readers?

Stasia: Since Raisa was a young girl (2 years old) she's been drawn to boy things. Whenever she went to the babysitters house, who had two boys of her own, Raisa would come home wearing her son's clothes. I never made much of it, and never considered that this could be a real thing... my daughter preferring boy clothes over girl clothes. The clothing battles REALLY started when she was 4 and 5 years old, because she didn't want to wear dresses, boot cut jeans or t-shirts with capped sleeves. But, I persisted. Until last December, when she was 6 years old. We were at a thrift store and she wanted me to buy her a shirt and tie. Ugh, I resisted, but when she found one that she LOVED, I went ahead and bought it for her, knowing right well that I would "disappear it" that night when she went to sleep. But when we got home, she immediately put on the shirt and tie, and stood in front of the mirror.  When she first saw her reflection, she became motionless and said to me in a whisper, "Mama, look how handsome I look."  Then she bolted across the dining room and said, "Mama, Mama, look how fast I can run!" and then she jumped and said, "Mama, look how much higher I can jump when I'm wearing a shirt and tie!"  I just stood there, ashamed, shocked and in disbelief. Here I was, telling my clients to dress their inside to their outside, but I was completely ignoring my daughter's plea to dress her own authentic inside-out spirit. Now, she wears a shirt and bow tie to school, and she rocks it!

Miggy: I'm familiar with the difficulties in having a child with visible special needs.  How can people best approach or respond to Raisa? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Stasia: Smile at her. Be kind. Be gracious. Ask her how old she is or what her favorite book is. She's a lovely beautiful child, as all children are. If you have a question, ask. She'd love to tell you the story of how her finger became her thumb, or about the scars on her neck from that big surgery she had when she was a baby, or about how her little brother likes to chase her around the house hitting her with train tracks, or about how she's really a girl, but likes to dress like a boy.

Miggy: What is the biggest lesson you’ve learned since becoming Raisa's mom?

Stasia: Hands down, it's to trust my intuition. When she was a brand new baby, just home from the hospital, every part of my body KNEW that she was struggling during her feeds. I took her to the doctor over and over again, and they just kept sending me home, saying I was being over-reactive and she was fine. I even demanded that my small local hospital admit her for observation.  And though her oxygen levels were dropping during her feeds, they discharged us with nothing more than infant CPR lessons. I was so angry, I could have spit nails. I hopped in the car, and drove her to the ER at Children's Hospital Boston, where she was immediately admitted to the hospital.  She was aspirating her feeds, and the docs couldn't believe that she was still alive. I knew something was wrong, even when the fancy, educated, smarter-than-me doctors told me everything was fine. I learned that if I KNOW something, than I KNOW it, no matter who tells me what I know isn't true.

I never trusted my intuition before, but somehow, it all changed the moment she was born. A few times I faltered, and went back to questioning myself, and each time, I kicked myself in the pants because as it turns out, my intuition was right on.

I know what I know. And I've learned to trust that.


Amen and amen. Seriously I can't not agree with you more about that intuition... when you know, you just KNOW. I don't even like to call it mother's intuition, because I think it goes much farther than that. As mothers I think sometimes, often critical times, we are given a gift of knowledge when it comes to our children. And of course I love the story of Raisa wearing the shirt and tie and how she could run faster and jump higher... I think that's true for all of us when we're allowed to be who we really are and it's clear you and Raisa are truly blessed to have each other (and the rest of your family!) Thanks again Stasia for all your wonderful words. One of these days we're going to have to get our awesome and crazy families together.

Thanks again for reading and supporting the spotlight everyone. Please, please please if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com.

Have a fantastic weekend!

Wednesday, January 21, 2015

Love Where You Live: Cincinnati: Over the Rhine

We've been in Cincinnati for almost exactly 6 months now and while it's not entirely new since we lived here before and all, it still feels very new to us this time around.  I've been a little mopey about embracing this new city as our home.  We have no roots or family connections here.  And yeah we lived here for 2 years a while back, but knowing that it was temporary at the time and never imagining that we would one day settle down here for good, it was easy to embrace it as a temporary rest stop on the road trip to surely a more glamorous final destination.  Cincinnati was supposed to be our Circus Circus overnight stay in Vegas on the way to the amazing Disney Land where our real lives would begin.  So yeah, when you think you're going to Disney Land and you're just stopping at Circus Circus for a night or two, it's awesome!  It's a hotel and a circus in one!  Then someone's all, Guess what?  You get to stay at Circus Circus forever.  And you're like wo wo wo... say what?

So that's how it sorta felt.  But here's the thing, Cincinnati is actually really great.  A lot better than Circus Circus in fact.  The 'Nati (as some say) is really coming into it's own and while there are still lots of locals who look at us and say, "Why did you move here?" with a confused look on their face, there are also a lot of locals really embracing their town and pouring their heart into making it a city they love and that I can get behind.  So I'm going to start a little Love Where You Live: Cincinnati series on the blog.  One, because I want to get out and explore, find the people and places that make Cincinnati awesome for my own sake. And two, I want to convince family and friends to scrap their plans for Hawaii and head to the Queen City instead.  

First up, Over the Rhine.

In the past few years since we've been away Cincinnati's downtown neighborhood Over the Rhine, or OTR has undergone a major shift.  First of all what makes this place so cool is that it is believed to be the largest intact Urban Historic district in the nation!  It contains the largest collection of Italianate Architecture in the country.  Translation:  Lots of cool old buildings.  That is actually one of the things I love most about Cincinnati is the old feel of the city.  Of course there are plenty of new subdivisions and buildings, but so much of Cincinnati is just old and I love it.  (Our first house we ever bought was here and at the time was 96 years old!  101 years old today.  It was my favorite.)  I still have a lot to learn about OTR, but it's become a favorite date night spot with lots of great restaurants, shops and art.  Last weekend B and I had our date night in OTR and saw this amazing (and I think pretty new) mural about Henry Holtgrewe apparently the strongest man in the world in the early 1900's.

During the summer there is the City Flea in the beautiful Washington Park pictured below.  We've taken the girls a few times and always enjoy ourselves.

There is some really great food in OTR as well.  Senate for their unique and upscale hotdogs, Abigail Street for delicious Greek food and B's favorite Taste of Belgium for the amazing Belgium waffles that we eat like cookies.

So that's it!

I know I'm not the only one who had an arranged marriage so-to-speak with a new city or town--what did you do to try and make yourself fall in love?  And more importantly, were you successful?  Tips!  Advice!  Let's hear it.   Some of you may also be familiar with the band Over the Rhine as well, locals natch.  

photos 1/2/3/4

Monday, January 19, 2015

A New View of Civil Rights

Friday I was talking with PSP and Lamp about Martin Luther King, who he was and why we had a day off of school because of him.  PSP naturally knew and understood quite a bit more than Lamp, but of course I was trying to help bridge the gap so they both could understand a little better. As I stood there explaining to my limb different daughter about racism and how there are some people who think other people aren't worth as much because the color of their skin, I was achingly mindful of the fact that I was talking to her about discrimination because I wanted to prepare her, subtly and tenderly, for a world that still judges people based on their appearance.... people like her.

A few weeks ago when I interviewed Kyle Maynard I brought up the idea that people with disabilities are the final frontier of the civil rights. I was actually a little nervous to put it out there like that, but was relieved when Kyle said that his dad has always said the same thing. The past few years I have been more interested in the civil rights movement than I think I ever was before. I guess it's easy to only give passing thought to the civil rights movement when you're a privileged white girl. And I don't mean that in a demeaning way to myself or others like me... it's hard to be aware of every other world viewpoint. I know what I know.... you know? But you live and learn and whether gradually or all at once your scope widens and suddenly things that once felt like they had nothing to do with you are suddenly, uncharacteristically close. Having a disabled daughter has made the Civil Rights movement feels much closer to me than it ever has before. Simply watching some movies and reading some books will never transplant me to a place of true understanding. I get that. But my daughter with no hands, who can't walk, brings me pretty close. The frustrating thing is  I can't even truly understand what she's going through.  Black families had (and have) each other, they all know what it feels like to be black and experience a world made for and by white people.  My daughter will meet people like her in her life, but those closest to her and who love her the most will still never really know what it's like to live as a disabled person in a world made for and by able bodied people.  As a mother, that makes it all the more difficult knowing she bears these unique burdens alone.

Luckily the world she lives in is vastly more accepting of people with disabilities than it was a generation or two ago, at least in America. Better is awesome, but it's not good enough.  Enter Change the Face of Beauty. This is an organization started by a mom with a daughter with Down Syndrome and who wanted to see more people with disabilities represented in the media.  In their own words:

Our world is a visual world and [our] goal [is] to show the world how beautiful all people are. [We feel it is] important for everyone to be included in advertising. [We] started [our] own campaign in the beginning of 2012 and through the help of organizations, companies and media outlets recognizing [our] efforts [we] have grown and are now speaking out for the children and young adults with different abilities around the world.  

Recently Changing the Face of Beauty launched a social media campaign called #Imready #15in2015 where their goal is to see 15 major retailers to include people all abilities in their campaigns in 2015.  People with disabilities represent the largest minority group in the world.  To me this isn't out people with disabilities 'deserving' to be seen and heard, this is about truth and representing the world and it's beauty in all it's variety.  You don't have to know or love someone with a disability to participate, just a twitter, instagram or Facebook account.  Here is an example of how you can call out to your favorite retailers and ask for a change:

Also, it actually works!  This was a shoutout the Land of Nod gave to me last September on their IG account.  They have been working with on a little something that I'm excited to share in a couple of months.  Retailers are listening, we just need to shout loud enough for them to hear.

We all know Martin Luther Kings game changing I have a Dream speech and while he was specifically fighting for racial equality I don't think it's a stretch to imagine he, and other good people of the world including you and me, want that equality to reach far and wide.  If I could rewrite a single line of his speech it would go like this,

I have a dream that my little children will one day live in a world where they will not be judged by the color of their skin, the number of their chromosomes, the size and shape of their body, their sexual orientation or gender, their abilities or disables, but by the content of their character and the love in their hearts.  

Watch a great video here of people challenging their favorite retailers to include people with disables in 2015.

Today is a great day to make a difference don't you think?
Happy Martin Luther King, Jr. Day.

Tuesday, January 13, 2015

Operation Underground Railroad

I read an article a couple months ago about Operation Underground Railroad, an amazing organization who rescue children from human trafficking.  This organization first came to my attention because founder, Tim Ballard, is a BYU graduate and the story from BYU's paper appeared in my Facebook feed.  I read the article, then started looking up more about information about Operation Underground Railroad and videos of Tim talking about his organization on talk shows and other media outlets.  Tim spent 12 years working for the CIA doing similar work--saving children from the horrific abuse of trafficking and child pornography.  The problem was that since many of the children they were finding they couldn't actually help because they were outside their jurisdiction.  So Tim split from the CIA and formed his own organization which means he can actually mobilize faster than the government can (shocker) and get to more children, sooner.  In the past year (I believe OUR is only a year old) they have been very successful and have actually completed the most successful sting operations in history saving as many as 55 children at a time.  Because of Tim's background and knowledge they are able to work in conjunction with local governments to make these operations successful.   

Take a minute and read and/or watch some videos on Operation Underground Railroad here:
--The Blaze (video and article--I'm not a Glen Beck person, but it's a good interview)
--The produce of Schindler's List is producing a documentary about Tim and his organization called The Abolitionists which will premier at the 2015 Sundance Film Festival.  
--Also, Laurie Holden of The Walking Dead also went undercover with Tim for their operation in Columbia.  Love seeing a celebrity become so directly involved.  

There are a couple reasons I wanted to mention this organization besides the fact they're doing amazing work, rescuing children from unspeakable abuse.  First, I once again wanted to reinforce the link between the porn industry and human trafficking.  Remember my post about porn a few weeks ago?  I talked about the organization Fight the New Drug and one of their main reasons for fighting against porn is that the porn industry has a direct link to human trafficking.  From Fight the New Drug

"Not only do pornographers crop out the severe physical and emotional pain actors experience, but in many cases they also hide the fact that some “performers” aren’t given any choice at all... Obviously, human trafficking is an underground business, making firm statistics hard to come by. But the facts in cases that come to light are chilling. For example, in 2011, two Miami men were found guilty of spending five years luring women into a human trafficking trap. They would advertise modeling roles, then when women came to try out, they would drug them, kidnap them, rape them, videotape the violence, and sell it to pornography stores and businesses across the country."

When viewing porn how do you know if you're watching actors that are participating of their own free will or if you're watching people who are being forced to do the things you're watching?  You don't.  Additionally, when asked who these people are that are coming to traffickers to have sex with children Tim's answer is chilling.  "There's 2 million children being exploited commercially for sex, so what kind of demand would that create?  There are so many people that want this.  It's something, I know, that's hard to understand.  But it's anybody, it's everybody.  It's teachers, doctors, lawyers, people that walk amongst us.  They have this sex addiction.... It stems from porn use and it becomes an addiction that grows out of control and these guys end up wanting to buy 10 year old boys and girls."  

Porn fuels sex trafficking.  Period.  Maybe not all porn and maybe not all porn viewers, but there is a direct link there and we can't pretend there's not.  

The second reason I wanted to talk about this is because of this quote again from Tim Ballard: 

"It's funny, because we all read history and we think, 'Oh I would...have risen up, I would have fought, I would have been ab abolitionist.  And I tell them, 'No, you wouldn't have.  If you would have, you'd be doing that right now.  You know trafficking exists, you've heard of it, but you don't want to look." 

If you want to fight and make a differences go here to find out what you can do.  Obviously we can't all be undercover agents, but we can definitely make a difference.  

Have you heard of Operation Underground Railroad before?  There are a lot of good causes in the world and we have to pick and choose where our time and resources go, but for me I choose disability awareness, and fighting against pornography and human trafficking.  These are recent decisions for me and I'm still not sure how my involvement will look, but these causes really speak to my heart.  What about you?  Do you have specific causes, non-profits, charities that you're working to promote?  What is the level of your involvement and how do you decide what to do?  Do you think you have to pick and choose or do you try to spread awareness or give a donation to anything that comes your way?  Anyone else wanting to join the movement to stop human trafficking?