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three, two, one . . . (3.21)

yesterday was world down syndrome awareness day.

i might have noticed about every 10 years or so, perhaps if someone tweeted about it . . .

except that 2 years ago, a little bundle of love, one with an extra dose of chromosome 21, was born into our lives . . . and i am now acutely aware of things like World Down Syndrome Day.

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i remember when i was pregnant, it seemed like everyone else was pregnant too.  or when i wanted to buy a navy car and thought, nah, i never see those on the road, they started appearing everywhere.  that’s what awareness means to me.  you are suddenly in tune with your surroundings.

when jax was less than two weeks old, we were introduced to a family with a sweet little 18 month old girl who had down syndrome.  we bundled up our tiny infant and made the longest 3 mile journey i’ve ever made. jonathan drove and i sat in nervous silence while our minds raced and spoke louder than words ever would . . .

i remember sitting with these dear friends we had just met, tears pouring down all our faces as i asked inappropriate questions like:

are you supposed to say, “my kid has Downs” or do i just say Down syndrome?

am i obligated to acknowledge the elephant in the room to everyone (aka strangers in the produce section of central market) that yes, indeed jackson’s gorgeous blue almond eyes means he has Down syndrome?

does it make you angry now when you hear the word retarded?

does it mean he won’t get invited to the other kid’s birthday parties because he looks different or he can’t keep up?

will it mean that a neighborhood mom won’t call me to join them on a stroll because she’s embarrassed?

in the quietness of their living room, her words pierced me, “Mica, there will never be a box for you.”  just like that. she said it. air hung on those words as i let them sink in . . .

and she was right.  while these past 2 years have been full of joy, there have been those little fleeting moments of uncertainty, where i’m just not quite sure where i fit in.  it’s those little moments where i’m learning what awareness is really all about . . . like when people ask his age, quietly wondering to themselves, “shouldn’t kids be able to walk by 2 years old?”  or when i’m in the waiting room at the pediatrician and i nervously laugh that oh, yes he’s 2, but he’s not really talking yet . . .

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sometimes i throw it out there.  ya know, like the “i know that you know know i know” sort of thing.

then other times, i don’t feel the need to explain anything,  and so they quietly wonder.

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there are things i still don’t know.

i’m not sure i’ll ever be ready to read books on Down syndrome or hear about “so and so’s cousin” with DS who is working! at a grocery store!  they say it with 2 exclamation points like i should be looking forward to my jackson being a bagger at kroger.

and here’s the deal.  if it makes HIM happy, then by all means, he can work and do as he pleases.

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but right now, he’s 2 years old.  he delights in the magic of balloons.  he could watch toy story 3 every day if i let him.  he sequels with excitement when i open the front door at the adventures that await us out there.  he whines in his carseat until i play Ceo Lo Green’s “Forget You” or some other ridiculous pop song that i’m sure makes me a bad mother.

and while i’m quite positive that before 02.15.09, on multiple occasions i said some version of, “Oh, don’t be retarded!” i don’t feel sad, because i simply wasn’t aware of who might have taken offense at the R-word . . .

good ole’ websters says awareness means “concerned and well-informed of a situation or fact”.

in the past two years, i could have never guessed that my list of things i’d be “well-informed” about would be things like SureSteps, proprioception, Nystagmus, and ocular Torticollis.  but alas, not only has my vocabulary grown, but my capacity to extend grace towards those who are simply, unaware.

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so, my jackson, thank you for opening my eyes to the simplicity of ball pits, balloons blowing in the breeze, and the glorious feeling of new spring grass running through our fingers.  i’m pretty sure i’m a better mother because of you, and i can’t wait for all the other things you will teach me along our way.

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Ann Piper - I love your perspective, friend. So many of the things you shared are just how I feel about raising a child with autism and epilepsy. You’re exactly right that raising kids who are on a different path than most can really make us better moms. And it’s made me a better Christ-follower. My boring, check-the box, ‘long-term planner’ mentality has been replaced by a more adventurous and dependent faith. What a gift. Much love to you and the entire May crew today. — Ann

Vickie Otts - Micah, What a beautiful post. I love your honesty. I know there are days that seem unfair and hard, BUT I also know that God is sovereign. God gave Jackson to you and Jonathon because her knew you would be the perfect parents for him. He knew you would be aware and love him and nurture him to be all God has intended for him to be. I believe that God has big plans for Jackson. I don’t know what, BUT He doesn’t make mistakes. His precious spirit and joy are there for you every day to enjoy. I think we would all learn to be aware more, but maybe as seen through the eyes of Jackson. I think he sees life with a joy and innocence that should all experience. Maybe that is just one way he will teach you as parents and those that he meets. Love you both and your sweet precious family. Also, love to read your posts!!

Christy - I love this post and am thankful to hear your perspective. I am teary as I know your pure joy for your son and even more so when I think he is the one who could really teach us all so much about pure joy, delight, and acceptance. Many blessings to your family!!!

Jen - This was a beautiful post and I really enjoyed reading about your journey with your precious son. He is adorable and the grace and love in which you are walking is inspiring. Thanks for sharing!

Maria Teresa G. Pedroche - Hi Mica,
Thanks for sharing your stories. I look forward to meeting your family and sharing the art museum with Jackson.

Jill - You have such a gift of writing. This post brought tears to my eyes. What joy you have, through the graciousness of the Lord, in your precious little Jackson. Thank you for sharing your heart, your experiences, and being so honest. It’s humbling to read, and there is no doubt in my mind that God knew exactly what he was doing when he created Jackson in his mother’s womb. He is fearfully and wonderfully made, just as we all are!!

Anna Brindley - Beautifully said and so resonates with me. So grateful to have made your acquaintance.

D - Just have to tell you how precious, adorable and cute your little boy is!!
God bless,
D, Mother of 5

trying it on.

several years ago, my sweet friend robyn taught me how to “Try On” emotions.

sometimes it’s hard to truly identify exactly what you are feeling, so you sort of pretend you are mad (for example) for an hour/day, whatever you need.  if it feels good, then hooray! you have identified your feeling!  if it doesn’t feel right, you can try on another emotion. most of the time, i realize, hey! i’m not mad at all, i’m actually feeling a bit sad . . .

in an effort to sort of clear through some mind clutter about the work/mama balance, this past week i allowed myself to “try on” Being A Mama.  i removed any guilt that i should be working on client projects, and hardly sat in front of my computer . . . and honestly, i was scared to death what might happen.

what if i HATE not working??  what if i’m a terrible mom 24/7??  what if i need to start drinking wine at 4pm because the kids have run me ragged?

the most incredible thing happened:  I Loved Every Second of It.

here are a few highlights of the week in mommyland:

i dusted off my REAL camera (remember the days of non-iphone pics!?) and had a glorious time taking candid pictures of the kids outside . . .

my creative energy  somehow redirected itself into Jackson’s 2 year party.  the “casual park afternoon party” took on a whole new level when i had time and creative brainpower to think about it.  this is where my need for problem solving and graphic design skills come in handy . . . i started rummaging around my craft baskets for free little touches that i could add to the party to bring it to life.  {i have a few posts about this coming up — one about the people who came and then another on the fun last minute details, so stay tuned}

we had a blast all week.  we crafted. we wrestled. we swung. we walked long walks.  we sat in the sunlight patches in our backyard for no reason.  we put away clothes that were too small.

all in all, it was glorious.

and don’t worry, clients, i haven’t forgotten about you.

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Ashleigh Carroll - Love this. I’m learning that most of the battle is in my head. I’m trying harder to allow myself to be IN THE MOMENT, not wishing it away for the next thing. So when I’m with my kids, just BEING THERE and not thinking about my to do list or school. And when I’m working on my list, not to feel guilty for missing anything with my kids. I think kids can sense when you’re double minded. Great post Mama.

robyn - It makes me so happy to hear about you cherishing your moments as a mama. I have no doubt that your children experience each moment of being with you as magic as well. You are a beautiful bright light and so full of love. They are lucky little ones. ;) I just wish I lived closer and we could do the mama moments together!

Heather Bloem - Just happened to click on your blog (haven’t checked it out in a while) and saw this post and 2 prior. I’m glad to know that I’m not the only one! Thank you for writing this out so well!

Your blog and kiddos are gorgeous! Keep up the good work mama! :)

the Swiper strikes again

dear madelyn.

i love how you love your brother.  i’ve never seen you smile the way you smile at him – smiling and laughing if he looks in your direction or starts crawling over to you, usually to steal your toy  . . . which of course, you happily hand him and smile.

a few months ago something struck me on a level that i couldn’t really take in — you will never see your brother as anything but Jackson, your big brother.  you think he hung the moon.  seriously.  you watch him like a hawk, try to do everything he does, and he doesn’t even give you the time of day.  he barely notices you, and when he does, he usually tries to pull your eyes out or makes sure your ears are still attached.

your unfailing love for him amazes me.  this afternoon i put both of you in your crib just for a moment so i could put away some laundry. i knew i couldn’t go very far because jackson has a sketchy past of attacking your sweet little face . . . but this time, he just sat there and you two smiled and laughed at each other for a long while.  it made my heart flutter in ways i didn’t know it could do . . .

and then of course, the Swiper striked again, over and over and still, you kept smiling.  you finally started swiping back — which of course, did NOT make jackson very pumped.  he threw a pretend tantrum {he’s gotten good at that recently} and you just kept on smiling at him, thinking it was a game.

but what was so incredible was the realization that you love jackson for EXACTLY who he is, and always will.  your little eyes don’t see some of the things i see sometimes .  . .

thank you for teaching me this afternoon what it could look like to just love, unhindered.

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Ashleigh Carroll - Mica Marie. No one can make me cry like you can. Sometimes I think it’s just because you’re such a good writer, good at capturing the emotion of moments like this. Tonight I know it’s just because I love you. It has been my privilege to be your friend these last 12 or 13 years. To watch you find your husband, live your life and love your children. Thank you for loving the people in your life with Mica enthusiasm. It’s contagious and beautiful.

something’s gotta give.

i wish i could do it All.  seriously, i have the motivation AND the energy . . . but darn it, there are only 24 hours in the day.

i attended a Polish luncheon yesterday, and Bill Hendricks spoke on Giftedness and it was an extremely powerful and encouraging message.

basically, he uses the word Giftedness to describe the inborn core strengths and natural motivation you instinctively use to do things that are satisfying and productive. Not just what you can do, but what you were born to do, enjoy doing, and do very well.

he had us rank our job satisfaction on a scale of 1-5 (1 means you hate your life every day in your current job, and 5 means you think you have the greatest job in the world).

i literally had to hold back the tears during the talk — because i’m a 5.  a legit, bonafide Five.  I absolutely LOVE my job (jobs).  Love. Love. Love.  most days i think i’m the luckiest gal in the whole world that i can dream and design and by some miracle, people pay for these services and products.

BUT, this comes with a difficult challenge:  i LOVE being a mom too.  i’m crazy in love with my kiddos, and i don’t want to miss a blink.

for the past two years i’ve been in Limbo.  limbo of being pregnant/nursing and raising these little babes, WHILE trying to maintain and keep up client relationships, gain new business, and altogether grow both Mica May Design and May Books.

the TRUTH is that i’m in way over my head.  the TRUTH is that i’m conflicted every day about wanting to spend time with my kids and wanting to work.  the TRUTH is that i’m a better woman, wife, and mom when i DO work!  the TRUTH is that there is not a perfect system for me as a “full time work at home mom” . . . and the logistics are killing me.

this year is all about being intentional (with my time/relationships/spending habits), and i think that as much as this artist bucks The System, i truly do need it.

i have had to teach myself the value of structure – scheduling my weeks, our meals, our yearly trips, etc.

but i have found that there is FREEDOM within the bounds of structure!  i just need to remind myself of these every day — because my mind doesn’t work in linear boxes.  my mind is a crazy place of designs and hopes and dreams and plans yet to be set . . . and i forget that a structure can be my friend in the midst of the craziness.

right now, my day to day life is a little tricky. madelyn needs more and more attention and work is at all time high.  until now, i’ve been able to sneak work into the nooks and crannys of my day (while she naps, plays in her excersaucer, on tuesdays when she is a MDO, and in the evenings when they are in bed). in August, she will join her brother at RISE 2-3 times a week, which will be a GREAT solution for both of us (she will love all the stimulation and the learning!) and i’ll have a quiet house i can full devote to work three days a week.

until then, i’m looking for a solution for me and my Madi.  i think i’m in denial that i need help more days a week than i’d like to admit.  with the NSS looming and lots of new design projects, i think scheduling out exact work hours and hiring some extra help is inevitable.

while i’d love to cook gourmet meals, grow veggies in our backyard, make all their photo albums of the past two years, go to yoga every morning . . . this just isn’t the season for those things.  my priorities are my hubby, my babies, and my companies.

yes, we’ll eat, but it might be an egg sandwich and i’m just perfectly fine with that!

because, something’s gotta give.

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happy birthday buddy!

my jackson.

this afternoon you wanted so badly to get up on the piano bench. you have always been content with standing up and straining to reach the keys, but something told me you were trying to tell me you NEEDED to get up on that bench.

so, i pulled it out, and stood behind you so you didn’t fall . . . 

and you took my breath away. words will never be able to capture that magical moment we had — the sunlight streaming through the window onto that little mohawk of yours, and you giving me the most glorious personal concert i’ve ever had.

i did not see a two-year old simply banging on the keys. this was Music. i have no doubt that you knew exactly which notes you wanted to hit — and even if you didn’t, it didn’t matter.  

every now and then you would close your eyes and laugh and others moments you nearly fell off the bench because you couldn’t help yourself from dancing at the same time.  

i clapped, hooped and hollered for you all the while, which made your eyes sparkle in a way that can only come from pure and unhindered Joy.

it gave me a glimpse into the depths of your mind and inspired me about the person you are growing up to be. maybe you are the next musical genius waiting to be discovered!

when you were born, and we learned you had down syndrome, many people started talking about the potential limitations and obstacles that could be in your future.  it seemed that everywhere we turned, there was The List of features, handicaps, or behavior expectations for a person with down syndrome. this frustrated me on a level so deep that . . . well let’s just say i didn’t have all positive thoughts towards those people who wrote those things.

i felt as though someone delivered a “welcome home baby!” package complete with a cozy swaddle blanket, some adorable booties, and then they snuck in an index card with all the potential obstacles you might encounter.  

i wonder what would have been on my index card if it was handed to my mom when i was one week old . . . perhaps something like, “Mica will be miserably bad at basic math, she won’t make the cheerleading squad, she will have a 2.6 GPA from college, the list could go on. oh, how tempting it would be for my Mom to have put me in extra tutoring, extra tumbling, so maybe, just maybe, the limitations spoken about on my card wouldn’t come true . . .

i believe that i am who i am today because my mom and everyone around me believed the best for me and never put any limitations on my abilities.

my jackson, i am and will always be your strongest advocate. your loudest cheerleader.  your biggest fan. when you think you can’t do something, i’ll be right there to pick you back up to try again or to whisper in your ear to keep going.  

and frankly, i’m on the edge of my seat just waiting to see what the Lord has in store for you.  i have a feeling you might be the coolest hair stylist there ever was. or the next great piano composer, touring all over the world because everyone is in awe of your dancing fingers.  your smile and charisma will dazzle the masses, i have no doubt.

wherever you go and whatever you do, i believe in you.

(this letter was published on a blog about faith, family and disabilities for their weekly feature “Perfectly Human”.
you can view it here! http://bit.ly/gjVGK2

thanks amy for the opportunity to share a little glimpse of life with Jackson!
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