31 May 2012

Walking Contradiction

I usually try to avoid blogging at night in the heat of passion, but tonight I'm breaking the rule because I think I can keep my head on straight.

For a long time now, I've been working on a blog post about how I want people to interact with me regarding Down syndrome information. Do I want people to send me newspaper clippings about kids with Down syndrome? Do I want people for forward me online articles? Do I want people to tell me stories about their cousin who has Down syndrome? The truth is that I don't flippin' know. Sometimes I do want those stories, sometimes I don't. I don't know if it is about the person who is doing the sending, where I'm at in the healing process, or just plain what my mood is. There are times people send me things and I want to fly off the handle or burst into tears. Then there are other times that people send me things and I am brimming with inspiration or excited to learn new tidbits. I haven't yet figured out the why and until I do, I can't put into words what I want.

My second "rant" of the night: I have heard people say many times, "If I could take Ds away from my kid, I wouldn't do it," and for a long time, I completely disagreed, but thought that if I could reach that same place, I'd be fully "healed" (ie, because I thought this would mean I was at peace with the Ds). But right now I'm at this weird contradictory place where I wouldn't take it away because it is part of who she is, but I get really pissed off when people ascribe Abigail's personality to her Down syndrome. When she's happy, calm, taking large crowds of people in stride, there is always someone in the group willing to chalk it up to Ds. I seriously know people who think that she slept through the night at a young age because of Down syndrome. There are days when I equate Ds to hardship and wish more than anything I could take it away. Then there are days when I wonder if maybe "the crazies" are right and she'd morph into a colicky, temperamental grouch if she only had 2 copies of the 21st chromosome.

I have a few facts I'm working with, though, some things I know and can verbalize:
1. Treat us like we're normal. Abigail, me, Matt, all of us. If you ever feel uncomfortable around someone with special needs and don't know what to say, just imagine there are no differences between that person and a mainstream person, then proceed. Down syndrome is secondary to that fact that she's a friendly little girl. Attribute Abigail's love of people to the fact that she's a girl, not her 3rd 21st chromosome.

2. Down syndrome is not a disease, so don't talk about it like it's cancer. It isn't "curable." It isn't "treatable." You can't have a "severe case" of Down syndrome and no magic combination of vitamins will "reduce" her "symptoms."

Sometimes I feel really drained after advocating and educating. The problem is never Abigail's Down syndrome, the problem is the way other people react to Abigail's Down syndrome. It's usually something along the lines of, "Oh my gosh, she will be happy and innocent for her entire life and will never experience hardship!"
I need those days where life is normal and I don't think about Ds to refuel me for the long battles.

I feel guilty even talking about how sometimes I don't like when or how people talk about Ds because I don't want friends and family and complete strangers to feel like they can't talk to me about it. I never get mad at people who have good intentions. I wanna not think about it anymore. I wanna just go on being me and everyone else will see we're cool with designer genes and chill out themselves. But I know that's not the way the world works. So here's a post for you with some of the emotional stuff I'm still going through, stream-of-consciousness style with minimal editing. And here's me analyzing my analysis of my emotions. And wondering what you'll think.

And now I am getting way too emotional because it is way past my bedtime. I think the common sense of the morning will "fix" me.

29 May 2012

The Novelty of a Long-Lost State

I just got back from an afternoon walk with Abigail, and as the nap in the warm sun made her quite tired, she is now down for her nap and I have a few minutes to myself. My husband is hunched over his computer and both kitties are staring out the windows while I feel like I'm writing the setting section at the opening of a play. Giving you some background so you can get a picture in your head for the backdrop against which I am writing. I have lots to say and I spent the entire 45 minute walk writing this post in my head.

I wanted to tell you that working out on a regular basis has me feeling strong and confident. I'm buttoning up shirts and shorts and jeans that haven't been done up since Abigail was just a glimmer in our eyes. I'm "this close" to declaring myself pre-pregnancy.

Matt spends most of the day studying at home, and I find it very difficult both not to interrupt him and find varied enough things to do so Abigail and I don't grow bored. I try to find things to get me out of the house often that don't involve too much money.

Off scene: Abigail squeals excitedly to herself as she slips off a sandal and tries to shove it between the slats of the crib. Mama walks off stage, repositions the baby on her back, restarts the mobile, and returns.

So, Abigail and I went for a walk in the middle of the day. With wild, careless abandon, as the sun was high in the sky and beating down its rays at a whopping 79 degrees with 28% humidity. I hope you read some sarcasm in that last sentence as we paired t-shirts with our jeans and were thankful for the protection when the breeze hit us. I am loving these cooler temperatures and marveling at the differences in the vegetation between the two states. I admire tall, hearty oak trees so big around that if you wrapped your arms around one in a big bear hug, they would only go about half way around. Sturdy to withstand a snowy blizzard and freezing temperatures. They are hearty in a different way than palm trees, which are flexible enough to bend in the slightest breeze to withstand terrific winds and beating rains. Instead of thick, lush, tropical plants in bright colors, people's houses are trimmed with delicate flowering bushes with small, pastel blooms. Wild flowers spring up in unpopulated meadows and bees buzz around with such density that I write myself a mental note to read up about bee stings in case we end up with some bad luck during a walk. Cottonwood seeds float down to the ground like snow flurries in November and neighborhood cats strut down the narrow sidewalks with a nonchalant attitude. Somethings are still the same, like muddy rivers with beached logs stacked with turtles and brown bunnies in tall grasses.

Off scene: Emma meows and paws at the window in anticipation of a squirrel who never wanders closer. Abigail chats to herself and Matt, who has just finished a quiz, pops in to convince her to go to sleep on his way upstairs to make a snack.

We are staying in the historic downtown of a small, sleepy town. I have staked out a two-mile loop that takes us along a lazy river, through a park, and around the quaint, narrow streets lined with small, unique homes, some made out of brick, some made out of stone, some with signs that read "built in 1899" and some that are converted from old churches and resplendent with bell towers and triangular, stained glass transoms atop their doors. 

End Scene.

New Scene: We have returned to the living room following one final attempt at having Abigail put herself to sleep. Mama has rocked the baby to sleep and is now confident that she has 1.5 hours of alone time.

Some of the streets have long forgotten sidewalks with grass growing between the cracks and some of the streets are dirt. Most of the homes have fallen into disrepair, but the area still feels very safe with homeowners mowing their lawns with little push mowers and watering their flower beds with a hose, stopping to say, "hello" as we pass. The house we are staying at is located far enough back from the road that we can neither see it nor hear traffic when the windows are open. It has a few acres and is located on a small, deep lake, clear and stocked with fat fish. 150 years ago, the picturesque landscape was mined for coal and as a result, it is very hilly. Anyway, I promised photos and I will not be made a liar, so here you are, photos of the property on which we are staying. This first one is a photo taken through the sliding glass door in Abigail's room looking out over the backyard:
Or how about out the window in the living room:
Our view is similar but different to the one we had in Florida. Instead of tall, bamboo-like trees, we have tall pine trees.
 And then there is the walk down to the lake:
Michigan is so familiar yet after so long a hiatus, I am rediscovering what makes it special.

I can not believe how long we anticipated the arrival of May while we were in Florida, excited and nervous. It contained so much: finals, graduation, moving, saying "goodbye" to Florida and all our new friends and "hello" to Michigan and all our family and long-lost northern friends, and a first birthday. Now all these things, and May, are over. It was a speedy and emotional month. And now it is over.

There are exactly 8 weeks until the bar exam, but while Matt focuses on the end of the summer, I am gearing up for our June adventures. Abigail's physical therapy starts back up tomorrow, Matt's parents are throwing him a graduation open house this weekend, we've got some doctor's appointments, Father's Day, and a three-day Mommy-baby trip to Chicago planned at the end of the month to try to secure some housing. Sprinkling in some play dates, dinner parties with friends, and movie nights, and we have ourselves an eventful June.

I am going to end this blog post with one of my favorite genres of photography: the fuzzy face shot. I love fuzzy face shots. There is something open and candid about them, caught unplanned and off guard while the blur smooths out the wrinkles and red spots (or in Abigail's case, the drool rash). It says, "I'm having too much fun to stop for a picture!" So here we have the fuzzy face shot of a smiling baby, lunging for the camera.
End Scene.

25 May 2012

Sprinting a Marathon

I think the first week is the hardest week. It's the week when you're trying to get settled, figure out routines, and get used to new circumstances.

Abigail is developed the ability to pull books off her bookshelf while at the same time has decided she no longer wants to be read to. It used to be one of her favorite activities, but now when we sit down with a book, she yells and wiggles away. So now she just pulls them off the bookshelf, gets mad when she can't open them, and gets mad when I try to read them to her.

We're only 1 week into bar study, but I can already tell what the summer is going to be like. If law school is a marathon and final exams are the sprints, then bar study is like sprinting a marathon. Matt is currently spending about eight hours a day hitting the books. Although he does occasionally stop to eat, go to the bathroom, or smile in Abigail's general direction, those eight hours are primarily spent in a classroom staring at a projector followed by sitting at home listening to online lectures while answering questions in the biggest workbook I've ever seen in my life. Sometimes over dinner, I ask him what he wants to do when the bar is all over. I would love to go to DC or take that Caribbean cruise I had my heart set on as a graduation present back when law school first started. We don't have the money right now, though, so we're trying to think of something that would be more realistic. Something fun and inexpensive we can do between the bar exam and the job starting, maybe in Michigan, maybe in Chicago. Comment if you have an idea : )

Abigail is getting more and more bold with her moving and sitting skills and she'll now just plop her butt down wherever she wants, even if it means sitting on top of a pile of blocks, or a stack of baby books, or my foot. She gets really mad when a closet door or chair gets in the way of her ideal tuchus placement. Anyway, I think it is probably really good for her abs to be steadying herself on such an uneven surface. Her core is getting really strong and I think we'll be crawling before the end of June.

I can't believe how much I depended on him to help me when we were in law school. I thought I was handling things primarily myself, but I was very wrong. I depended on him to make her a bottle in the evening after class, or change her diaper before dinner, or even just stick the pacifier back in her mouth during nap time quite a bit. We currently still have a few hours together in the evening, but they're usually after Abigail goes down. I do take a "power hour" on the recommendation of a friend, which is an hour that I get all to myself and Matt takes care of Abigail. I usually take my power hour in the morning so that I can get a good workout in, but it does leave me feeling a little bit frazzled by the time the evening arrives and I haven't gotten a break. I think Abigail is going through a growth spurt, so she's eating every three hours (big meals too!) and wanting to take frequent, short naps, instead of the two long ones that give me ample time to do design work, the dishes, take a quick nap myself, or some combination thereof.

One really nice thing about having an older baby is that she can play by herself now. She gets around by herself, so I just keep her room baby proof, then sit back in the rocking chair and blog, fold laundry, etc, while she plays with her toys. I can get maybe 30-45 minutes about 2-3 times a day this way. I need to stay in the same room, but at least I don't have to keep her occupied like I did when she was too little to sit up by herself.

I can see how this is going to get worse and worse as the bar exam approaches. This is going to be one hell of a summer, full of discipline and focus. I CAN NOT WAIT until the bar exam is over, Matt starts working a 9-5 and we start living a normal life. With money. I'm excited about that money part. I realized this afternoon that I am going to need to go the extra mile, not just with caring for Abigail, but with Matt too, staying positive and feeding him little bits of encouragement, recognizing that for the next two months, I am going to be doing more giving than taking, being the rock for him.
I get the feeling someone doesn't think she's getting enough attention.

22 May 2012

Time Travelling

Things are going quite well in our new little Farming Town, Michigan. I do miss Swampy Paradise, Florida, especially today when the sun spent most of the day hiding behind the clouds. When were out and about the other day, I saw a mom pushing a stroller with the canopy top still folded up and the sun on the toddler's face. I gasped and was about to exclaim to Matt the horrors of that mother exposing her child to the harsh sun, when I remembered that we now live in Michigan and the temperatures were in the 60s or 70s. They probably needed the sun to stay warm! I expect to see water in low lands and wonder at the lack of egrets, hurons, ibises, and anhingas around the ponds. Sometimes I catch myself thinking, when we go back to Florida, but then I remind myself that there won't be a "next time" for me to tell my book club about something interesting I read or Abigail's physical therapist what she did today. We are here and while I am totally stoked to be able to hug my sister-in-law and chat with a long-lost friend at a play date, I am also grieving the loss of my tropical life.

On the way up to Michigan, Matt and I listened to The Time Machine by H.G. Wells on mp3 (which is free on iTunes). In the novel, The Time Traveller is discussing the four dimensions with his scientifically-inclined friends, who deny that time is not a dimension because man cannot travel in it like he can forward, backward, up and down. The Time Traveller argues, "You are wrong to say that we cannot move about in Time. For instance, if I am recalling an incident very vividly I go back to the instant of its occurrence: I become absent-minded, as you say. I jump back for a moment. Of course we have no means of staying back for any length of Time, any more than a savage or an animal has of staying six feet above the ground." It comforts me when I remember laying on the incredibly soft, white sand or sweating beneath the scanty shade of an iconic palm tree to imagine that I am, for just a moment, time traveling and am really back in Florida.

I am now choosing to turn my attention away from the departure of the familiar and focus on the positives in my life right now. My hostess and I have made a pact that this will be Weight Loss Summer. As part of our resolution, we are working out together every morning. Even though it hasn't yet been a week, I have already noticed that it it solely because we are workout buddies that I get my lazy ass out of bed in the morning. Nearly every day now, I have laid in bed at 6:50am, thinking to myself, I better get up now. In 10 minutes, she is going to be standing in the living room wondering where I am. I don't want to be the reason we quit. So we work out. Even though it is Saturday. Even though we stayed up late the night before. Even though sleeping sounds way more enjoyable. I prefer a morning workout because it sets me up for good habits during the rest of the day. I start the day positive and it gives me more discipline to turn down leftover birthday cupcakes and McDonald's mocha frappes. 

The cold is another really awesome thing I'm enjoying. I love bundling up in my old sweatshirts, printed with names of tourist destinations from up north or embroidered with names of trendy stores I used to shop at back when I had money. I love wearing my pink converse sneakers and newsboys hats. I complain that I am cold with a smile on my face.

Matt and I have four nieces and three nephews, all under the age of seven. Since we have been gone for three years, most of them were barely walking and talking when we hit the road and they don't know who we are save a name their parents occasionally mention. I am careful to send them birthday cards and valentines and Christmas cards every year, but I know they don't know who we are. Being in town is giving us the chance to reconnect with our nieces and nephews and I am doing my best to build a status as a fun aunt. I am not very bold or outgoing, but I can draw a mean kitty cat and sculpt a serious play doh flower and that gives me a mega bonus in the kid-impressing department. I have also learned how to interact with kids since having Abigail, so I am liberal with the compliments and enjoy cuddling with the babies.

When I'm not working out or schmoozing three-year-olds, I'm scheduling doctor's appointments (which is more complicated that it seems when one has an impatient 1-year-old in one hand and is trying to answer initial in-take questions at the same time), figuring out insurance after an out-of-state move, and tracking down medical records that never made it to their final destination. I made a summer goals list (I wouldn't be me if I didn't!) and am crocheting Abigail a baby sweater.

Anyway, I realize this is a very short post, but I guess that is all the better considering that I have no pictures to share with you. This week, I will get some photos of the very picturesque place I am spending the summer and will strive to impress you with daring stories of Memorial weekend adventures.

20 May 2012

Happy Birthday, Baby

Abigail Claire turned one year old on Friday. It 100% doesn't feel like I can start marking her age in years now. We celebrated the big day by playing things close to the chest, going book shopping (combining two of her favorite things: books and shopping), taking a walk, and eating pint-sized strawberry ice cream (the baby was pint-sized, not the ice cream : ) and lazing around the house doing things she enjoys.
  Our present to Abigail, a giant stuffed puppy.
Abigail took her first self-portrait : )

The big bash occurred this afternoon, Sunday, when we invited Abigail's aunts, uncles, cousins, grandparents, and a few friends over and grilled some burgers. Abigail handled herself beautifully, greeting guests with a flirty smile, playing with rampaging cousins like she was raised in a large family, and smooshing cupcake in her face as if she'd been practicing for weeks.
 One benefit of being a designer is custom-made invitations.
A handmade no sew tutu, handmade butterfly headband, and handmade legwarmers (I made up the pattern for those), and an adorable butterfly onesie, handmade by a dear friend who sends Abigail the most wonderful handmade presents. The wings were less than $10 at Target. I haven't gone over the receipts yet, but I do believe that we stayed within a very narrow budget, thanks to family and friends helping out in a million little ways, giving us the most amazing first birthday party a butterfly princess could ask for.

 She really liked being sung to. My Polish in-laws also sang a rousing rendition of Sto Lat.
 At first she wasn't really sure what to do with it.
 But as the tasting went on, she got the hang of it.
Gotta love Etsy for super-cute, inexpensive cupcake wrappers and edible butterfly toppers.
This summer is the final pages of one chapter in my life. This chapter was full of drama and uncertainty, living so very far from home, meeting new friends, struggling through the difficulties that law school brings, adjusting to a new baby, dealing with the pain of open-heart surgery and an unexpected diagnosis. Life is what we make of it and I have decided that this summer will be the transition that connects the three-year-long period of sacrifice with our adult life in Chicago. This will be a summer of self-improvement, of creating new habits that will sustain our new lifestyle when we have our nights and weekends to ourselves are making more money than we are spending. 10 more weeks until we End Scene and begin anew. In 10 weeks, I will be ready. 

17 May 2012

The Last Weekend

We are arrived, unpacked, put away, and grocery shopped. Now it is time to catch up on all the little things that get pushed to the wayside when a person moves, like paying bills, following up on mail forwards, and confirming the transfer of medical records. I also need to get ready for Abigail's birthday, which is TOMORROW! but mostly the party, which won't occur until the weekend. Matt starts his bar review course on Monday and that marks the start of hell (it technically started a few days ago, but the first week isn't killer, so he skipped for the drive up and to help me unpack). I think I am going to spend all of next week recuperating and re-establishing our routine, especially nap time and mommy exercise time.

By day three of the road trip, everyone involved was sick of the car and done with the journey. So far we are adjusting pretty well, including the kitties. Although I haven't witnessed a seizure, kitty #2 was acting very post-seizure-esque last night, the evening of our first day. She is doing much better today, though, and acting much less skiddish. We have two bedrooms, a living room, a bathroom to ourselves, and gobs of storage - a closet off all three rooms plus the hallway! We even have glass sliders off the two bedrooms on to a back deck overlooking a very picturesque and rugged landscape. 2/3 of our stuff is stored in a pole barn on the property to be dealt with once we know what size apartment we'll have in Chicago. The temperatures are something else, though, the current highs matching the lowest lows of a Naples winter.

On Friday afternoon, Matt was taking a final exam. Less than 24 hours later, he was walking across the stage and collecting a diploma. Less than 24 hours later, he was loading a uHaul. Less than 24 hours later, we were driving away from Naples. A little over 50 hours later (it's a 24 hour drive without stopping), we were unloading a uHaul and moving in. Phew.

Anyway, the point of this post is to say, "We're finally here!" and post photos of the festivities of last weekend.

 My enormously ostentatious ring, purchased on an outing with my parents.

Some decorations around our nearly empty apartment on Friday.

Our "miss" on the way to graduation.

Before the crowning.

After the ceremony - notice the way awesome hood! Unfortunately, we had to give it back. I asked Matt in all seriousness, "How much do they charge if you 'forget' to return it?"

My popular husband with one of his close friends (above) and the dean (below).

Left: the empty apartment on Sunday evening. Abigail is sitting where the couch was.
Right: masterfully packing the uHaul.

Abigail and her physical therapist hanging out in the parking garage on our very last night in Naples, Florida, waiting for the rain to let up.

Us after we ventured to the water, drank the most amazing smoothies, and the rain returned.