Friday, September 19, 2014

Call for Spotlights

Hi friends.  Did you know we are super close to reaching 100 spotlights?  I think that's awesome.  Some might even say freaking awesome.  Freaking awes for short.  Anyway, I'm always looking for more families and individuals to spotlight, so if you would like to participate please email me at thislittlemiggy at gmail dot com.  If you know someone who would be perfect for the special needs spotlight, tell them about it and then have them email me directly.  (It just doesn't result in a spotlight if I email them first--they usually aren't interested enough unless they're willing to email me.)  Thanks so much for your love and support of this series it has meant so much to me and to you guys!  I get emails and comments about the spotlight often and how much you all enjoy it.  Although sometimes I don't have spotlights because I've just been too busy to reply, email questions, etc.  I've stopped apologizing for that and I hope you understand.  One woman show over here and real life (vs the blog) has to come first.

I wanted to share this short video making the rounds on FB lately that I thought you might enjoy.  Thanks Victoria!  This video encapsulates so many ideas for me--the worth of a soul no matter our abilities or disabilities, our hidden potential and like Victoria who sent this video to me, I like Paul's question... when someone says to him I could never do that, he simple asks What can you do?  Seriously, what can you do?  I think we short change ourselves and downplay our abilities all the time.  Enjoy.  

I probably don't say it enough, but thanks for your support.  I love this little space of mine on the internet and it wouldn't be anything without you guys.  So thank you.


Thursday, September 18, 2014

I Just Can't Win

Tuesday, a school bus pulls up to our house to pick up Lamp for preschool.  Lamp was squealing, excited and driving as fast as her power chair would take her, which was obviously not fast enough.  Finally, she was starting preschool this year, or as she tells everyone Pre-K kindergarten.  We're still working on that part.  Anyway,  she could not wait and honestly neither could I.  I couldn't wait that is, until that actual minute I watched a giant bus drive away with my petite, sweet Lamp waving goodbye earnestly from the darkened bus window charging toward her big pre-k life and then suddenly my heart was like wait, wait, WAIT!!!  

For weeks I feel like I've been barely able to catch my breath.  The house, the kids, the dinner making, the blogging, the time to myselfing, the busy busy husband, the settling, the late hours, the early mornings, the sick baby... it's been a lot.  Settling into a new life--even if we've lived here before--takes time.  And really, it does feel new all over again.  I've been stressed.  Stretched to my limits, and even breaking through those limits a few times. The one thing I've been sorta holding onto is Lamp going to preschool.  This is the only change/reprieve I have in the coming weeks, the only sign of my load being lightened even a little and I need it.

Unlike private preschool, going through the district has taken a lot of work.  Several meetings with district people--therapists, directors, teachers, aids.  Not to mention an IEP, filling out paperwork, doctor appointments, referrals... the works.  And almost every day Lamp has been asking, Do I get to go to school today?  When do I get to go to school?  And everyday I'm checking my calendar wondering the same thing, Does she go to school today?  When does she go to school? 

So here we were both ready, willing and excited for preschool.  Lamp's excited for new friends, learning, computer time, motor skills, eating at school, riding the bus... everything.  I'm excited for a few hours a day with just one kidlet under my belt, a little less noise and a little more time.  Finally after meeting, meeting, meeting and waiting, waiting, waiting Tuesday was the first day of preschool.  I get a phone call telling me the bus is on the way to pick her up (oh yessiree, she gets bussed to and from school) I tell her they're on their way and she starts squealing and scooting down the hallway--she can not contain her excitement.  She is an aerosol can of excitement if you will, that someone has punctured because that stuff is going errrywhere .  We get her bag, put on her jacket, buckle her in her power chair and there she goes, charging full speed ahead to the big yellow bus.  

And it hits me.

Wait, wait....lets get a picture! I say to B who miraculously happens to be home.  She stops and poses for a picture, but my heart is already in my throat and as she speeds away I click a few more.

The bus.  It's so big.  And she's so little.  And it's taking her to school.  They lower the lift in the back of the bus, I climb inside to help them get her out of her chair and situated into a carseat.  She is beaming from ear to ear.  So excited, meanwhile my mama heart is doing a double take.

Did we do the right thing?  Is this the right thing?  We would have put her in school somewhere right?  This is a big bus and how do I know when she'll get to school?  I haven't even met these bus drivers yet, this could be some elaborate kidnapping ploy.  Is this carseat in tight enough?  No, have them tighten it.  

So while Lamp is sitting there giddy with excitement, grinning from ear to ear,  I'm in the middle of an internal civil war.  One minute I'm convinced that I'm on the cusp of a mental breakdown begging for space, air, time and the next minute, I'm questioning the very existence of public schooling and wondering why I didn't request hard copies of the background checks for every person in the building including the other children just to be safe.

The great dichotomy of motherhood, at least for me, is how crazy my children make me one minute and how much love my heart feels ready to pop the next.  Wanting them out of my hair and loving their sticky little fingers on my face in the same breath.  This sentiment seems particularly true of Lamp.  Perhaps it's 4-year-olds in general.  Either way, I cannot win.  

As I'm buckling her into a car seat on the bus Lamp says, "Give me kisses, give me kisses. (I comply) OK mom.  Now get off the bus."

And I just laugh because that girl... oh that girl.  She is ready to carpe diem the crap out of her first day of preschool and no one is going to stand in her way.  Not even me.  So. get. off. the. freaking. bus. mom.

I get off the bus and my heart is swelling with so many emotions and I admit that one of those emotions was fear.  It's scary sending my especially vulnerable 4-year-old out into the world leaving the protective safety of my shadow.  But Lamp, she is not scared.  I always tell her she's the bravest girl I know and it never seemed truer than in that moment waving to her from the bus window as she slowly pulls away.  

I walk back to the house, take a deep breath and my first thought slaps me upside the head... it's too quiet in here.  

For the record, Lamp had a great first day of school.  She's loving it so far and it really is good for all of us--myself included.   Huzzah!  

Tuesday, September 16, 2014

Apple Picking

My favorite thing about this picture is I didn't edit anything other than the size.  
The sky really was that blue and the grass really was that green.  

We returned to a long held family tradition of apple picking this past weekend.  While it looks hot and sunny in this picture, there was still a chill in the air and the weather has cooled down significantly since then.  Fall.  Anyway, apple picking was something we did in New York and our first time around in Cincinnati, but not so much in Texas.  It's not a thing there.  It felt good to go again.  Being so busy these days means that we could spend every waking minute of every weekend trying to get the house together.  And sometimes I want to.  I really want a cozy, put together house to hunker down in this winter.  But we also need time to just be us, spend time together and put the stress of our current life on the back burner.  It may not be much, but it felt like us.  And that felt good.    


Friday, September 12, 2014

Body Image and Gratitude

I have a short story to share with you, but first you must endure a long-winded back story.  Sorry, it's how I do.

First it's important to note that as a modern American female I've had my fair share of body image issues.  I distinctly remember my first "diets" (trying not to eat too much) starting around 3rd grade.  I was very worried about my round belly and apparently I was vocal about this concern as I remember being assured by many grown-ups that it was normal for a little girl to have a round belly.  In fact, a funny childhood story stems from this worry:  In 3rd grade I thought my belly was so big (it wasn't) that I convinced myself I was pregnant.  I had NO IDEA how a girl actually got pregnant, but I knew that being pregnant when you didn't have a husband was bad.  (Remember, Mormon upbringing... not trying to lay any judgments here).  I was so convinced, and so weighed down with worry, that one night I was laying in bed unable to sleep completely filled with anxiety.  Finally I got up to get my mom and tell her the terrible news.  Mom, I think I'm pregnant.  I still remember her rolling her lips inside, under her teeth and pressing them together trying to stifle a laugh.  Then she calmly assured me that I was definitely not pregnant and sent me back to bed.  I mean it is a funny memory now, but the unfunny part and the part I don't talk about is that it all stemmed from thinking I was fat.  So much so, that the only logical explanation in my head was that I must be pregnant.

As a child I remember hearing from family members things  such as, Don't eat until you're full, that's how you get fat or if you ever get fat I'll send you to a fat farm.   One summer I was running around in a swimsuit playing in the sprinklers when someone pinched my inner thigh and said, What's this?  This person laughed as I felt the embarrassment spread over myself and the immediate desire to cover my body.  Even though I was young, I was old enough to perceive that this person was trying to send me a message about my chunky inner thighs.  No matter how skinny I've been (and I'll admit I've been too skinny at times) my inner thighs have always had extra padding... it's just how I'm built.  You guys, I was not overweight at all.  I don't think I could have even been categorized as chunky in my youth.  Yet I had it in my head that I was too big and thought about it often.

I share these experiences because 1)  I don't think most people think of me as someone with body image issues.  I don't talk about it a lot, but it's there.  2) I think my experiences as a child are common for girls in my generation.  And I think the women in my life said these things to me, because those were common things for them to hear in their generation.  And 3) I think it sucks.

The thing is this type of thinking doesn't just go away, not even with "awareness" and "acceptance."  In college I was a skinny girl.  It became part of my identity.  However because I was 'skinny' I think that most people would have never known I was someone who still struggled with body image issues.  But I'm trying to paint an accurate picture so understand, it wasn't this huge, burdensome, all-consuming struggle.  Not in the way of someone with an eating disorder or anything.  (Although I dabbled with bulimia for about 6 months in high school.  I stopped on my own after realizing it was stupid, so I'm not sure I truly considered myself bulimic.  Would you consider someone an alcoholic if they drank on and off for 6 months and then stopped cold turkey?  At least that's how I've always thought about it.)

This is a rather long prologue to a short story, but I tell you this to help you understand that like many women, my body image issues run deep.  These days I work out more for health (truly), but I'm not sure I'll ever completely shake the desire to look a certain way.  Frankly, I don't think that's necessarily intrinsically bad.  I kinda want to have some ripped arms and I think that can be a worthy goal.

Thankfully there are a lot more women of my generation trying to stop the negative body talk for ourselves, our daughters, granddaughters, nieces, cousins, friends, etc.  And when I say negative body talk I don't just mean saying negative things about a girls body.  What I mean is making a woman's or a girls body an object to judge, ridicule, approve, gawk, etc.  Positive body talk can be just as damaging.  Last year PSP came home from school saying, My teacher says that I'm tall and skinny just like a model.  Oi.  It's not that a girls body should never be considered beautiful, because body's are!  They're amazing and beautiful!  But I think you know what I'm saying... praising a body for looking a certain way, while condemning a body for not looking a certain way... that hurts people.  Which hurts societies.  Which hurts nations, etc.

OK, so finally my story... my long-winded point to sharing all of this.

A few weeks ago Lamp was saying the prayer--for either dinner or before bedtime, I can't really remember.  Thing is, Lamp likes to pray.  She pretty much asks to say every prayer and we pretty much let her.  So Lamp says the prayer and she's thanking Heavenly Father for all sorts of things.  And then she says,  "Thank you for our bodies, thank you for bones and blood..."

I don't remember much past that because my heart was caught on the fact that my disabled daughter was thanking her Father in Heaven for bodies.  A little girl who was born with a body actually missing bones says a prayer of gratitude for this precious gift, even specifically mentioning bones.

That was a tender moment for me, and I've thought about it a lot the past couple of weeks.  Of course her prayed has helped to once again realign my perspective and remember all the reasons I'm grateful for my body.  My gosh, my body... I sometimes forget how amazing it is and all the blessings my body has afforded me.  Yes, her prayer is a great reminder to love our bodies--no matter the imperfections, because they are all most definitely imperfect.  But I share this not to make you feel guilty for caring about your muffin top or despising your freckles, it's bigger than that--I mean sure those things too, but there's more to it.  Lamp was demonstrating a principle of truth that I needed to hear and maybe you needed to hear it too.  Her prayer is a  beautiful reminder of gratitude and how gratitude can shape us and change us.  Perhaps you're familiar with the book The Hiding Place by Corrie Ten Boom.  If so, then surely you remember Betsy's prayer of gratitude for the fleas because she was trying to 'be grateful in all things.'  Her sister Corrie thought this was going a little too far... surely even God didn't expect them to be grateful for fleas.  In the end Corrie would learn that the fleas were most definitely something to be grateful for. 

So maybe you needed that little shift in perspective about your body, or maybe there are some fleas in your life you need to express gratitude for, either way I hope this little story gives you something to think about and maybe even a little boost.  Personally I find Lamp's prayer humbling, yet uplifting.  It was said from a place of purity--as a 4 year old there was no double meaning like, Hey listen up you able-bodied ingrates.   Just simple, childlike gratitude.  Yes I have body issues that run deep and because of that I have become keenly aware of the responsibility I have as a mother of 3 girls--3 girls with very different body types--to change that conversation, avoid the comparisons and shield them from the lies, contradictions and confusion about the female body.  But gratitude for our bodies no matter their size, shape or deficiencies?  I think that might just be the best antidote there is.  Is that too simplistic an answer?  Maybe.  But in my experience gratitude is a powerful force.

Thoughts, feelings, impressions?  Please share...

This is a great video that actually fits really well with today's post.  I get sent a lot of videos, articles and links featuring people with limb differences.  Which is really great--thank you! Most of the time I've seen the video or at least the person being featured.  But I had never seen this video or this guy Chris thanks Kristen!  If you have a few minutes it's worth your time.  And the end... it gets me every time.  Have a great weekend!  XO Migs


Tuesday, September 09, 2014

Minute to Win It

I can't remember where I was going exactly--maybe out to California to visit my brother?--but it was my first time away on a vacation by myself since becoming a mom.  I believe PSP was about 2 1/2 years old.  Traveling before kids always seemed so full of frustration and inconvenience.  Are you kidding me... the flight's delayed again?...  Why did I bring my big purse, it's so heavy...  Please don't let the lady with the crying kid sit next to me... Oh yes I did think that last one.  Often...shameful I know, but I was a different person then.

But anyway this first flight traveling by myself post-kids proved to be a paradigm shift in my world. Suddenly delays were a luxurious gift of extra time, no bag of luggage could be so unmanageable as a squirmy 2 year old and sit next to a mom or dad with young kiddos?  I'd love to!  They could probably use an extra hand from someone in the know and if the kid cries, oh least it's not my kid.  So that was the actual shift in perspective, but I distinctly remember another personal phenomenon as well.  As soon as I sat down on the plane it's like I morphed into a rabid raccoon in a garbage dump at midnight--suddenly attacking everything I enjoyed all at one time.  I remember stuffing chocolate in my mouth, listening to music, getting out a book, flipping through a magazine and if I had wifi (can't remember if I did) I'm sure I was checking that too.  All at once.  

I think one of the biggest adjustments for me in regards to becoming a mom has been learning to accomplish tasks--or not accomplish tasks--in small spurts of time.  What I didn't realize before becoming a mom is that time it's just for being leisurely in the morning or enjoying quiet moments alone.  Time brings with it the ability to start a task and complete it in one fell swoop--or at least stop doing it when you want to stop doing it.

Years and years later, I still find this aspect of my life to be a common occurrence.  So here I am on a Tuesday morning (the day B goes into work late) doing this rabid raccoon routine of trying to fit everything in at once.  Clean out the car, a quick grocery run, a stroll around the mall, and a pastry at Nordy's while writing a quick post.  I'm getting better at managing getting things done in short spurts around the house--or at least managing my expectations--but give me a couple hours to myself and I go full throttle on do-what-I-want-to-do-without-the-kids mode.

Time to go get some studio time while the girls are down for naps.  Ever since my art post last week and bragging about painting every day, I haven't painted since--ha!  So it goes... Also, thanks for the votes about my art.  I'm excited to get some prints made and will let you know asap. 

Friday, September 05, 2014

Special Needs Spotlight || Aviya

***Hey guys, Miggy here.  Before todays spotlight I just wanted to post a link to a sweet family who's youngest daughter was born with Trisomy 4p and at 15 months old passed away this week.  It seems that her passing was unexpected.  If you feel so inclined to check out their blog and send some love you can do so here.  Friends and family have also set up a donation page to help cover medical expenses and funeral costs--if you'd like to donate an item to be auctioned, or money you can check it out here.  Thanks.***

Hi Miggy! Thank you so much for this space, I am so excited to share a little bit of my story with you. I am a 20 year old college honors student and am double majoring in Psychology and Women’s and Gender Studies. I have a 4.0 GPA, volunteer, work, and live with Ehlers-Danlos Syndrome, as well as a laundry list of other health issues. But, as you can see, my diagnosis is just a piece of my story. I hope you and your readers enjoy!


Miggy:  Aviya! Thank you so much for participating in today's spotlight and sharing your story. As you know I most often talk to parents about their children, but I love doing spotlights from different perspectives as well, so I'm grateful you wrote in. Today we're going to be talking about you, and your perspective on life as someone with a disability. First can you educate us on Ehlers-Danlos Syndrome. What is it and how old were you when you were diagnosed.

Aviya:  Ehlers-Danlos Syndrome (EDS) is a genetic disorder that affects the connective tissues (skin, joints) of the body. It is also an umbrella disorder, meaning that it can lead to other issues such as Fibromyalgia, Postural Orthostatic Tachycardia, or Complex Regional Pain syndrome, all of which I have. There are multiple types of EDS with the most severe being the Vascular type. I have mixed-type EDS, meaning that I have symptoms of both the Hypermobility type and the Vascular type. Although the estimates vary, the most common type, Hypermobility type, is thought to affect about 1 in 50,000 individuals. As a result of my faulty collagen, I have very flexible joints that are prone to partial and full dislocations, poor wound healing, easy bruising, chronic pain, low-tone hearing loss, and multiple cardio-vascular issues.

I was first diagnosed when I was 15, after years of being told by medical professionals that I was crazy or that I was attempting to make up injuries for attention. My diagnosis story is definitely unique: I first diagnosed myself based on a T.V. show. After noticing how many symptoms I had that matched the symptoms of the individual featured, I freaked out a little bit and started doing some research. After meeting with a geneticist, I learned that I fit 8.5 out of a possible 9 diagnostic criteria for EDS. Months of tests and procedures later, my parents and I decided to break from the traditional treatment plan and found an amazing geneticist who specializes in pediatric and adolescent pain. I am currently not involved with any therapies and am much happier and healthier than I ever was before.

Miggy:  What was it like growing up with a condition that made you 'different' from your peers? Do you remember the age where your awareness of your condition really came into focus? Were you ever bullied because of EDS? If so, how did you cope and combat the bullying? 

Aviya:  Because I wasn't diagnosed until high school, the most difficult part about growing up with EDS was frustration that came with a lack of information. It was frustrating to explain that even without a diagnosis on paper that I have a great deal of pain. It was even harder when I was given advice by people who meant well, but for whatever reason couldn't grasp that, no, I couldn't just decide to walk.  After receiving my diagnosis, I realized that a short and sweet response was usually the most effective.  When people seemed innocently curious, I usually gave them a basic run down of EDS.  Because people can be harsh, I had a much harder time with certain friends in middle school than at any other point. Looking back on that time, I remember feeling lonely and frustrated because I hated feeling so different. Once I started high school I found amazing friends who helped cushion the hard days and completely changed my outlook.

Miggy: I would love to hear about your family--how did your parents support and raise you to help you be the person you are today? What about your siblings (if any) what role did they play in shaping your perception of yourself and the world around you? Anything your parents did that was super amazing you can pass on to us mothers still in the thick of raising our younguns? Anything they could have done better?

Aviya:  My parents have always been my biggest cheerleaders and strongest advocates. Most importantly, they have never attempted to keep me from anything I felt drawn to, even if it completely stressed them out knowing how much I would be up against. My younger sister has always had a knack for keeping me on my toes and pushing me to train just as hard as everyone else, because there is no way I could let my little sister show me up. The most amazing thing that my parents did was encouraging me to keep trying things and they gave me the space to figure out the solutions on my own. When I hurt my shoulder swimming, I found horseback riding. After horseback riding hurt my hip, I started shadowing my childhood dance instructor and eventually began teaching my own classes. They always expected the same level of commitment out of me as they did my sister and never let me use my health issues as a figurative (or literal) crutch.

Miggy: Explain how EDS affects your day-to-day life?

Aviya:  Each day I have to plan around my pain. No matter if it is an exam where I can expect to have issues with my thumbs dislocating when I try to write or ankle pain from walking just a little too far, I have to be able to give myself other options when something becomes too much for me. This has given me access to so many different opportunities simply because I know how to find alternatives.

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 due to your EDS? Have you ever been able to laugh at/with/about your disability?  

Aviya:  From the moment I explain EDS to anyone (including a lot of the doctors that have seen me), I’m always asked to bend myself into weird positions or show them some cool party trick. While I totally get that EDS is interesting and confusing unless you have met someone with it before, no one seems to realize that dislocating my joints is still painful, even if it is easy or happens often. 

Miggy: In your email you said that despite some of the complications that come from living with EDS you live a very full and happy life. As you said, you're a normal 20 year old. What do you want people to know about living with a disability? I've written about pity and people using those with disabilities as "inspiration porn" (and to be honest, I even do that myself sometimes) and I think for those of us on the outside it can be a fine line between compassion/empathy and pity/a condescending attitude.

Aviya:  The most important thing to know is that I am just like everyone else. Most days, I blend in pretty well. I don’t skip classes, I don’t ask for favors, and I can get by on my own. But even though on most days I look just like everyone else, on my best day I’m hovering around a 5 on a 1-10 pain scale. If I take an elevator, it isn't because I’m lazy, but because my knee is having trouble staying in place. I’m not overreacting when I pack ace bandages and a knee brace for a weekend away, I’m trying to make sure I don’t slow anyone down more than necessary. In short- just because I look okay does not mean I am. On the flip side, I don’t take anyone’s pity. I don’t think of myself as disadvantaged because I’m not. I will never be a professional dancer, I can’t go on roller coasters, and I won’t run a marathon. It just isn't in the cards.  But at the end of the day, the list of things I cannot do will always be shorter than the list of things I can.

Miggy: Is there anything else you want to share with my readers about EDS, disability awareness or life in general?

Aviya:  Just as with many other disabilities, EDS is an invisible illness. Even though you may not notice my disability by looking at me, it still exists. My pain is still real. But life is too short to spend time focusing only on what hurts. I am a person, not a diagnosis.


"At the end of the day, this list of things I cannot do will always be shorter than the list of things I can."  I might just need to put that on a t-shirt or poster.  High fives Avi!  Thanks so much for sharing your story with us today.  I long ago stopped trying to figure out which was harder--disabilities you could see or disabilities you couldn't see.  Both have their disadvantages and hardships, and both have their benefits too.  But I can't imagine how difficult it must have been to be in so much pain and to have doctors and other people tell you that it might just all be in your head.  And I love how your parents supported and believed and advocated for you.  I really appreciate your overall attitude and outlook on life--pushing yourself to achieve all that you can, but recognizing your very real limits as well.  Thanks again Avi!  

You guys!  Please... if you or someone you know would like to be considered for the spotlight email me, or have them email me directly at thislittlemiggy at gmail dot com.  

Have a fantastic weekend! 

Thursday, September 04, 2014

Paintings, Prints and Sales

recent watercolor sketches

While my studio is a ways from being finished (I have a vision in my head though...and it's lovely) but right now it's functional.  And lately I've been painting every day.  Every. Day.  You have no idea how good it feels to be doing that.  Anyway I'm going to be selling some of my original work soon via instagram (follow me at thislittlemiggy) but before I do that I want to look into having some prints made of some of my work so I can make some pieces more affordable.

This is where you come in...if you were inclined to buy a print or two of my work (and I hope you are) what 2 paintings below would you want to see sold as prints?  Will you let me know in the comments by just posting the two numbers you like most?  Some of these are old, some are new but all of these are among my favorites.  

Thanks for voting!  

#1. Texas (forever)


#3. Hudson River

#4. Sunset Beach (original will be for sale)

#5. Sunset Beach

#6. Nebraska Sky

#7. Horizon Line