29 February 2012

Spring Break

I had intended to write a post last night, but then we went out to a last-minute celebration dinner instead. What were we celebrating, you ask? MATT GOT THE JOB!!! Chi-town people, the Windy City. Ever since Matt got the phone call yesterday, we just periodically stop and look at each other during the day and mouth the word Chicago.

It is a one year fellowship right downtown starting in August. We'll still go to Michigan for the summer so that Matt can study for and take the Michigan bar, then we'll head on over to Chicago in August. It's about 4-5 hours from most of our family. The company doesn't intend to hire the fellow after the year is over, but hopefully we'll have another position lined up by then. Such joyous news called for the best celebration destination in town: the Cheesecake Factory. Seriously, their cheesecake is the most amazing thing that has ever touched my tastebuds.
PS They have one in Chicago too.

After four years (one year of trying to figure out which law school to attend, then three in law school) of trying to figure out: where are we going to spend the summer? Where are we going to live during the school year? How are we going to move all our possessions? It feel so good to have it all figured out. The most stressful thing in my life right now is trying to plan Abigail's birthday. After the most trying, difficult, and emotional year of my entire life, I am so. incredibly. thankful. that I get to freak out over whether or not to buy special cupcake wrappers.

Do you want to know what else is way fun? I even had a sweet blog post planned for yesterday before I got to spice it up with news of gainful employment! Since we're on Spring Break, we decided to plan a day trip to to visit Manatee Park (we did see a manatee - sorry, no photos, though) and Thomas Edison and Henry Ford's vacation home (about 45 minutes away). I come from the automotive city and long-time blog readers know that I have a weird obsession with my car, so it probably isn't a big surprise that when we found out Edison and Ford vacationed in Florida, we wanted to see their estates. Edison invented pretty much everything and had time to garden (that's simplifying it a bit. He was motivated by money to dapple in botony plus his wife liked gardening). Anyway, we bought a little flowering plant from the estates and I am going to try my darnedest to keep it from dying.

The Edison & Ford estate is home to one of the world's largest banyan trees, which are just about the coolest trees I've ever seen. A banyan is best described with photos:

That is one tree. They are so cool. It looks like they grow super big with super big branches, then they send down vine-y shoots off those branches to start new trucks. (I suppose I could read the Wikipedia article to find out how accurate I am, but that's at least what it looks like to the untrained eye).
One tree, my friends. One wicked cool tree.

This is Matt standing next to a different Banyan tree, next to one of those vine-y shoots.

There were also tons of fruit trees growing throughout the estates.
Pineapples! One grows out of the center of each bush - how cool is that?! We also saw banana, mango, kumquat, papaya, vanilla, coffee, and even fruit I've never heard of.

Huge amounts of bougainvillea - another gorgeous plant with which I'm in love. Plus orchids, which I discovered last year are air plants!

The estate consisted of Henry Ford's main house:
Note: that is not my baby stroller.The view off his front porch.
The view again. That is a very wide Caloosahatchee River (pronounced just like it's spelled).

his care taker's house, and a garage:


A white picket fence separated it from Thomas Edison's main house:
That building on the right is the master suite. The building on the left is the main house.
Huge wrap-around porches.


guest house:
pool house:
 
One of the first private pools in the region.

care taker's house, office:
and various laboratories. Right behind Edison's office was my favorite part:
With bougainvilla-covered pergolas and pine trees to form the walls, the Moonlight Garden is called an outdoor room.

There is so much to like about Florida architecture and flora, I could go on and on about how living here has changed my tastes and what I want for my future dream house. There are so many things I am going to miss about living here. I hope that Chicago gives me a whole new world of opportunities to explore. New architecture, new experiences, new outlooks on the world.

26 February 2012

Thankful Days

I think today was Discover People in Your Community Who Have Down Syndrome Day. We were sitting in a pew waiting for Mass to start when an older gentleman who had Down Syndrome came strolling down the center aisle. Mere strolling isn't accurate. More like power strolling. Polite, but determined. Turns out he was headed for a pew in the front section of the church. And he got it. What struck me was the fact that he was alone. Even Matt noted, "he looks like he's doing well for himself." He is. He is overcoming odds as he was born in a time when children with Down Syndrome were not given the kind of attention and resources that they are today. And he is thriving.

Our second discovery came as we were sitting in the pew post-communion when I noticed a set of grandparents waiting in line for communion, the grandfather carrying a 6 or 7 year old girl. She had Down syndrome and was looking over his shoulder trading funny faces with grandma, who was behind them. (Okay, I recognize that waiting for communion isn't the best place for irreverent behavior, but I'm focusing on a different aspect of the moment).

The third and final person in my community made her appearance just outside the doors of Publix, the local grocery store. We were just stopping for a newspaper and some bananas (okay, and maybe a doughnut), and she was headed across the store front to gather some more grocery carts. She was in her mid-teens, at work, a slight look of annoyance on her face at the large post-Mass grocery store mob. I caught her attention, smiled, and said a cheerful, "hello." I had Abigail positioned for maximum visibility. She responded with a surprised, "hi" and her eyes traveled toward Abigail. As they landed on my baby girl, a look of recognition passed across her face. She looked back at me, and for one instant, we had a connection. I wanted to befriend that girl. To take her to lunch and say, "tell me your life story. Don't leave out one minute." But our moment was over. The crowd of people pushed us into the store and she went back to work.

I realize that I don't need to recount every instance where we have run into someone else with Down syndrome, but this is so new for us. I remember every single time I have encountered someone with Down syndrome since Abigail was born. We are new members of this community and every person I see with Down syndrome has already been through at least some of the joys and the struggles that we will experience, and I want to know everything about that person. People like to form communities based around common similarities. If I saw someone reading Edgar Huntly, I would probably be just as excited to run up and talk to them as I was with the blond girl at Publix. We have something in common, you and I! Something not many people share! Kurt Vonnegut wrote a book about it, Slapstick, in which the president gives everyone a new middle name. It's been a while since I've read it, but it goes something like this: the new middle names have a noun and a number, like Daisy-4. Everyone who shares your word (Daisy) is your sibling, and everyone who shares your number (4) is your cousin. It creates a sense of community among the citizenry, because you will inevitably run across a member of your family wherever you go. This same social nature is why we have book clubs, motorcycle riding clubs, running clubs. K2 P1. Did I just excite a knitter somewhere in the blogosphere? Cirrostratus! Anyone else out there a meteorology nut? We join together based on common experiences and interests. And we walk away happy.

The more I embrace this new community, the more whole I feel. Last week, we got together with another mom who happens to have a baby with Down syndrome. It was Abigail's first official play date (not counting the dinner party Abigail's physical therapist threw). She said something that really struck me. I was telling her how nervous I was to have another baby for fear that my second child might have special needs and she said, "it's never as bad in real life as it is in [your] head." It is amazing to me how someone can say something so simple, sometimes even so obvious, but the understanding that stems from the realization can be dramatic.

When we moved to Florida, I broke my main rule: don't get attached. I have moved around a lot in my life, 16 moves in 25 years of life so far, and I realized in about 5th grade that forming friendships only meant getting hurt. From that point on, for the most part, I kept a safe distance between myself and my friends. I let a few people in, but I always got hurt when we parted ways. But I made friends down here. Book club friends who send me messages telling me they missed me when I miss a meeting. Friends who, upon meeting me for the first time, invite me over for a play date to form budding friendships. Friends who are genuinely disappointed when Abigail has a cold and we can't visit. I am sure that it will hurt when I leave the ones I let in. But I feel more alive when I let people in. I like myself better when I have genuine friendships.

Before I gave birth, I used to make new goals at the beginning of each semester: spring, summer, and fall. I jumped back on the bandwagon with my new year's resolutions (which are going very well, I plan to update you all on March 1st), and I have been thinking about what kinds of summer goals I want to set for myself once Matt graduates. I think I want to continue my path of healing and self-improvement. I feel like I am on a journey of self discovery, a journey of finding my middle. You don't have to be single and travel to India in order to find yourself. Sometimes you can figure out who you are even with the responsibilities of a law school husband and special needs daughter.

25 February 2012

Party Over Here

It is a bonafide party over here because as of yesterday at 2pm (-ish) we officially hit Spring Break 2012 - The Last Spring Break of Our Time. It started with just Abigail and I. I sat her up in her room with a toy, so I could quickly throw on some make up in mine. I came back to find this:

She was still sitting!

She's been sitting like a mad man over here.


Even kitty got in on the party action. Note: this is how a kitty parties.

Later that afternoon, I decided that the 80* with 67% humidity was way too nice to spend the evening at home, so I called an emergency trip to the beach to watch the sunset.

Is it okay if your child eats sand?

We played in the sand, found seashells, and admired Ibises.


Check out that ibis photo, eh? eh? Someone's getting fancy with the camera settings ; ) 10 bonus points to whoever can tell me what the little clam-thingy that Matt is holding is.

It is so easy to photograph a sunset.



On the Gulf of Mexico



On a soft, white, sandy beach.



With a light, salty warm breeze.



When we got home, Abigail went straight to bed, so Matt and I watched the first of the Lord of the Rings trilogy. He bought all three of them on Amazon for $0.31. Total. Not each, total. No shipping.

Party over here.

22 February 2012

The Interview

Today Matt has his first real job interview for a lawyer position. He did have one phone interview a few months back, but the court wasn't actually hiring. The best we can figure is that they just wanted to interview him to see if they should keep his resume on file. The whole thing was very odd. But anyway, today at 4pm he has an interview for a one-year long fellowship in downtown Chicago. Matt would still study for and take the bar in Michigan, before relocating sometime in August for the job. Although Matt and I are really more country people than city people, we have talked several times about how fun it might be to spend a little time in a city before we settle down and buy a home in the country. Whenever Matt applies for a job out-of-state, I always spend a little time day dreaming about what life would be like in that place. Sometimes I even do a little research online to see what Philadelphia or Seattle, for example, has to offer. It isn't hard for me to imagine living in Chicago. Growing up in Michigan, I made the 4-5 hour trip to Chicago often. When Matt and I got married and I discovered that he'd only ever driven through Chi Town on his way to visit family in Minnesota, we decided to spend the first part of our honeymoon in Chicago.



Us on our honeymoon in downtown Chicago - April 2008.

Matt had been applying primarily for federal clerkships, which are highly competitive. Even though he is in the top of his class, he is coming from a tier-4 law school, not to mention how many lawyers with work experience who are job hunting right along side us. But Matt has a really good shot at this job. The company is Catholic and really likes to hire Ave grads to fill the fellowship position. Matt is in the top of his class. He interviews well. He has been going to a few mock interviews through the school to practice. So, yeah. The position is salaried, we already know what they pay, and we approve of it. The only problem we have is that the job doesn't come with benefits. With all of Abigail's medical issues, we can't go for a week without insurance. Buying our own insurance is impossible because of Abigail's pre-existing conditions and we won't qualify for Medicaid with Matt's salary. If we are offered the job, Matt is going to ask them about buying in to their employee plan. I have a few websites bookmarked that contain several leads if we are forced to purchase something ourselves.

So yes, Chicago. You know my favorite part about moving to Chicago? We'll be able to visit and find an apartment before we move there!!! For those of you who missed the blog posts about the hell that is moving to an unknown address, I can attest to the immense difficulties. When we moved from Michigan to Florida for the first time, we had no idea where we were going to live. We lived in a hotel for a few days while we apartment hunted, signed paperwork, and waited for them to "ready" the apartment for us. When we moved back down again after spending the summer in Michigan for an internship in the summer, we stayed with friends for a few days while we signed the paperwork and waited for them to "ready" the apartment for us. Apparently everyone in all of American only moves to a place within one day's drive and they use a uHaul.

Part of me wants him to get this job, but part of me doesn't. I am not excited about moving out-of-state again, transferring all of Abigail's medical records again, getting her enrolled in therapy again. In fact, depending on how often they want to see her, I might keep all of her doctors, excepting the pediatrician, in Michigan. I am not excited about job hunting again and sitting on edge and worry that we might not have enough income again. But I can't plan now for what will happen in August of 2013. One day at a time, I have to remind myself.

In the meantime, I will just day dream about my future. In my head, we find a small, inexpensive apartment in the city, preferable above a store front. Matt commutes on the L everyday, so I can keep the car, but I get around primarily via walking and biking. Abigail and I frequent farmer's markets and find awesome thrifty places to shop so that we can save as much money as possible to pay off debts. Ah, day dreams.

Matt's interview is 25 minutes from right now.

20 February 2012

Healing

This is my 300th post. 300 times now, I have logged online, pulled up a blank page, and typed my heart out. 300 times I've tried to tell it how I see it, honestly, sometimes vulnerably. There are a lot of directions in which a girl could take her 300th post. I could make this a reflection piece and talk about the ways in which I've grown. I could talk about the future and what I want out of it, where I hope we are by this time next year, this time in five years, this time in ten years. But after a few day's reflection on this very important 300th post, I decided to talk about something more pertinent to right now. Something that has been nagging me for the last few weeks, but I finally understood on Friday night, at the Down syndrome dinner party.

When I was pregnant, I had an ideal birth plan, just like every other mom. I know that births don't always go according to plan, but the doctors had no reason to expect that I wouldn't have a normal delivery and healthy mommy/baby bonding time afterward. Not one single thing went according to plan excepting that Matt got to announce the gender. At first, I was so enamored with my new baby that all my fallen expectations didn't matter. But as the new-baby high wore away and hindsight showed us that a majority of the way things went during and after birth turned out to be strictly precautionary, I started to realize the pain of my traumatic birth experience. Then, just a week or so after she was born, we were hit with the diagnosis of Down syndrome. I never dealt with all the emotions that went through me. In fact, I think the only time I really even cried was when we first got the D/S news. I remember letting myself break down in the shower a few times, when the water was pounding down, drowning out the sound of my tears, but then I heard Abigail wake up and begin to yell, so I had to brush aside my feelings and move on with the grind. As the months went by and I buried my head in the preparations for surgery, then surgery, then recovery, then moving, then unpacking, I always found a reason to ignore the pain. In the meantime, I let the bitter jealousy build, finding myself wanting to cry whenever someone else announced their pregnancy or told their happy birth story.

For the last few weeks, it has really been hitting me how much I haven't healed. I am terrified of having another baby for fear of having another traumatic birth experience or another special needs baby. I don't think I could emotionally handle either. The looming approach of moving home is complicating my emotions. Having a place to live makes the fact that we are going back to Michigan in just 12 short weeks very real. I am not prepared to handle all the questions, inquiries. She is a year old already and not even crawling? Does she say any words yet? Does she even babble? Do you know what questions I am most terrified of? How are you handling all this? I can talk to you until my voice gives out from the technical, medical, anatomical perspective of how my daughter is doing. But I don't feel like I could tell my best friend about how I'm doing emotionally. But I finally know why. Because I am still broken.

So when Abigail's physical therapist invited us to dinner at her house, where she was hosting several of her clients and their families, all of whom have a child with Down syndrome, I faced with my first opportunity to interact with other parents of a baby with designer genes. I was nervous, but you know what? It was good, very good. On a surface level, it was just nice to talk to someone who knows the lingo. She's in the 3rd percentile for her weight. Oh, is that on a normal chart? Yes, yes, it is on a normal chart, and I'm dying to know what you think of the fact that the AAP no longer recommends that babies with Down syndrome be measured on their own chart! On a deeper scale, I recognized how much more whole these mothers are than me, and how much they could help me come to terms with my struggles.

Matt and I stayed up until about 1:30am that night talking about how we felt about our daughter's special needs. And I finally accepted that my lack of healing is preventing me from moving forward in my life. Back when I was in the worst throes of the postpartum depression, a friend of mine sent me a number of links so that I could find someone with whom to talk. Partly out of fear, partly out of a lack of money, I didn't act on them, but went to my doctor who just wanted to medicate me. But I finally searched through those links and contacted someone. She is going to help me find a therapist who will work with my financial road blocks.

I want to heal, I want to come to terms with my traumatic birth experience. I don't think I will be a very difficult case because I have had no problems bonding with Abigail at home and I have come to terms with her heart surgery. And, realistically, my traumatic birth experience could have been a lot worse.

Even though things are rough emotionally, things are great in many other ways. Our life is going so well right now, so full of blessings and and positives.

Yes, that is Abigail, sitting all by herself in the middle of the living room. She has been able to sit on her own for a brief few seconds for a while, but I told her therapist that I would not consider it a victory until I felt comfortable leave her alone for a moment. On her 9 month birthday, we had victory when I left her sitting to grab my camera and shoot not just one blurry shot, but nearly 50. She did fall over a few times, but not very many.


I didn't care about lighting or angles or anything. That is my baby girl and she is sitting by herself! Months worth of work are finally paying off!






Today she was very smiley and cuddly; melts my heart every time.

16 February 2012

Unexpected Surprises

Fret no more: we have a place to live this summer!

A long-time friend of Matt's and his wife have a large house in a quaint, ideally-located, little town and are offering us an entire floor for the summer! Two bedrooms, a bathroom, a living room, and even glass sliders to a deck overlooking a beautifully wooded lot. No rent, just utilities. I'm pretty sure I couldn't create a better set-up if I tried! This is the second time that someone reading my blog offered us a place to live. Thank you, readers! The town is located right off the freeway (in Williamston, for those of you who know us personally), which will make it easy for Matt to travel to various job interviews, it is about 30-40 minutes away from our family, and it's only 20 minutes away from where Matt will take his bar prep class, plus it's on the bus route. While I was in adoration, practically in tears begging God for some direction as to where we should live this summer, the wife was emailing me offering the space. She describes it perfectly: "it will be like we are sharing a summer vacation home!" I am so incredibly excited. I was so thrilled that I couldn't fall asleep until after midnight last night, thinking about what it was going to be like, how fun it will be with to have another girl around (Matt's usually a good sport about watching chick flicks with me, but there is something way more enjoyable about crying at the end of The Notebook when you're not the only one doing it). I spent a good chunk of nap time today Google-maps-ing how far the home was from various places (close enough to church to walk to Mass! Close enough to Starbucks that I might end up with a mocha frappuccino addiction!)

As if that isn't enough excitement for the last 24 hours, I have also decided to run a 5k. Or, more accurately, I let myself get talked into running a 5k. Abigail's therapist found a Couch to 5k program that she just started and I agreed to join her on the 9 week program that will end, we hope, with us finding a 5k somewhere in town. Matt and Abigail have already pledged to do what they can to support me. I have been tempted in the past to run one, but always chickened out before the big day arrived. I used to run fairly regularly before I got pregnant, but only 4-5 miles a week and at a very s l o w pace. But today I managed to squeeze out week 1 workout 1. Me, a runner girl? My goodness, what unexpected things life brings us!

Runner baby. Also an unexpected gift that life (God) brought us.
Runner kitty. Another unexpected surprise (deafness and epilepsy).


Runner mama. I didn't really kick my feet up the whole time, I swear I broke a sweat!

Anyway, tomorrow Abigail's therapist invited us to a dinner party where she is planning to host a number of families with children with Down syndrome. I am pretty nervous because this will be the first time I've ever interacted with other parents of a Down syndrome baby. I've been avoiding support groups and whatnot so far. I don't like to dwell on her Down syndrome because when she was first diagnosed, I spent so much time obsessing, reading every book I could, looking things up online, that I couldn't look at Abigail without thinking "Down syndrome." This has definitely been a crazy year, full of extremes, but I don't call this blog Finding My Middle because I already have a healthy balance! Now I can go for almost an entire day without her special needs popping up in my head, and I really, really like that. So I guess we'll see what happens tomorrow, just like we'll see what happens this summer, and this fall, and every year for the rest of our lives. And I'm gonna try not to fret about it because you never know when someone is out there right now answering your prayers. And that's what I love about right now.

15 February 2012

Wednesdays

Today has been one of those days where I really have to push myself to get anything done. I don't know why I feel this tired lethargy, but it has seeped into my very bones. As soon as I finish one task, I wonder how I'll ever must the energy to get the next one done. Slowly but surely I've managed...therapy...laundry...vacuuming...meeting with one of the therapists...finances...I still have a few more things to do before I can count today as a success, but I'm optimistic that I'll make it. Tonight I am going to adoration and then coming home and going to bed early. I'm hoping to be asleep by 8:30pm.

I still hate law review. Matt has an assignment due this Friday and he estimates needing to put in another 28 hours. On top of going to class and doing the reading so he's prepared for class. Is this how it's going to be everyday once he has a lawyer job? Oi.


In other news, after a person pays tens of thousands of dollars for a legal education, they then have to pay a $50 graduation fee on top of a $76 charge to rent the cap and gown. Extras include pictures for $56, a class ring for $500+, and a diploma frame for $150. As if that isn't "nickel and dime" - ing us enough, one has to take a bar review class before paying the actual $400 to take the (Michigan) bar. Two companies run the bar review class: Barbri, the established, $3055 class and Kaplan, the new, got-something-to-prove $2350 class. Each company has various guarantees about retaking the class if one fails the bar and reimbursing paid deposits if he switches from the competitor's class to theirs. We recently found out that both companies have scholarships available, so we filled out the applications and wrote the most heart-wrenching 500-word essay about Abigail. So far we've heard back from Barbri: $700. $700, seriously Barbri? That makes you the same price as Kaplan assuming they don't give us a scholarship. Oi. PS, we opted out of the pictures and class ring purchases.

In the meantime, now that my husband has 2 3/4 years of legal education under his belt, he has that "newly educated, not yet beaten down, enthusiasm to change the world" thing going, so about half of our conversations revolve around whether or not we could sue for damages or violation of warranty of merchantability (ie, false advertising). He reads every contract (even the ones before you download apps on a smart phone), usually blows up, and then goes on a giant rampage about how ridiculous our society can be. The other day he read the contract for the Live TV smart phone app aloud. Downloading the app meant users agree that Live TV could use whatever they post in any way Live TV sees fit, no matter what. Users also agree that all material belongs in whole to the company and waive any rights, including moral rights. We're not sure what that means. Some fun times over here in our household.

Having a moving plan begs the questions: where will you live? So I've been thinking a lot about our options. We don't yet have one that works best for our family (two adults, one baby, and two kitties) and our pocket book. Being the obsessive, planning type that I am, it's driving me crazy not having a decision, but I am trying really hard not to think about it. There is still time for Matt to have interviews and get a job offer before graduation. It is pointless to spend all this time and energy fretting just to get a job offer next month. I'm trying a new "think positive" attitude (all part of my new gratitude outlook), so I try to picture life going exactly as planned. I picture him getting a job, maybe even getting a little study-for-the-bar-bonus. I imagine us working super hard the first year to pay off all our debts. Then we'd work super hard for a second year to rebuild our savings and save for a down payment on a house. Living frugally, him working, me working, Who knows if it's mathematically possible. It's fun to imagine life going as planned for once.

Abigail and I have been keeping busy by taking long walks and thinking about her first birthday (only 3 months away!). We've decided on a butterfly theme. This week she suddenly decided that she does not want to sit by herself, so her abs become jello whenever I sit her up. She does roll over with ease now, teaching me the importance of regular vacuuming. We also have new neighbors (located downstairs). New, loud, chatty, smoking, barking dog neighbors. I've also been baking (red velvet cheesecake brownies for Matt for Valentine's Day), designing (I had two jobs go unpaid - grrr), and crocheting (I'm working on a huge crocheting project, which I can't talk about until December). I'm also thinking about starting up my own Etsy shop. I have a business plan that I've been working on since I was pregnant, but I'm letting a fear of the uncertainty of how Etsy shops work and fear that I won't have any personal time if I'm making stuff for the shop get in the way of a commitment.