29 April 2012

Because

It is currently 11:17pm on a Sunday night and I am blogging. Why?

-Because I just spent a few hours going through all my old posts and fixing the photos so they are not oversized and the captions are not obnoxious (they didn't switch over from Wordpress very well).

-Because I then tried to figure out why my search box and subscription link weren't working.

-Because I downloaded all 130 pictures I took this weekend, edited them, and uploaded a few to photobucket to get them ready for tomorrow's post.

-Because I climbed a 24' wall in 33 seconds and realized I hate heights.

-Because my husband and I went spelunking over our honeymoon and I realized I'm a completely, passionately in love with caves.

-Because I kicked my husband's ass at air hockey.

-Because the piece of shit air hockey table can time you out before you finish your game.

-Because I biked for 2 hours and my legs never once complained when I asked them to give me more.

-Because we nearly called off the biking because it looked like rain.

-Because the rain cleared up while we split some queso-heavy nachos at Moe's and then we caught the most glorious sunset of all time.

-Because I caught this way-cool photo of a pelican in the blue water with the blue sky and I thought it looked really cool.

-Because we went kayaking this morning and my arms, shoulders, and back are mega sore.

-Because I ate wwwaaayyy too much moo shu pork and wwwaaayyy too many Oreos tonight.

-Because baby smooshed mango everywhere.

-Because baby is really flexible

-Because two babysitters catapulted Abigail into a 9pm bedtime without intending to and now baby girl sleeps in.

-Because now mama sleeps in.

-Because I went through our filing cabinet and a few other cabinets this weekend and packed three boxes. With help, of course.


-Because tomorrow is May Day, and we've already started celebrating.

-Because I straightened up my apartment before I wrote this post.

-Because isn't this a really weird blue column in the middle of the pink cloud?

-Because when we were at the pier watching the sun set, there were a bunch of teenage boys fishing and saying cool things like, "You catching anything?" "No man, that pod right there is blowing up the tarpin. See all that poppin' 'n shit?"
-Because the water looked perfectly calm to me.

-Because Matt has a final exam tomorrow morning and is still awake.

-Because I decide I will read the complete works of Sherlock Holmes this summer.

-Because I have been thinking about Monday's post all weekend and all the things I wanted to tell you about and I just couldn't wait any longer.

-Because now it is 11:37pm, and if I wait much longer, this will be Monday's post.

-Because after I blogged that Russian readers are awesome, my Russian readership blew up and now Russia holds the #2 spot for "most pageviews by country," beating out long-standing Luxembourg. If you are reading my blog in a country in which English is not a primary language, please comment! You are totally way cool! PS, how did you find this humble blog?

-Because I harbor a secret desire to visit Europe and walk through old-growth forests like this one that was once featured on National Geographic's Photo of the Day. (The particular forest below is German. And I don't know if it is an old-growth forest).

-Because in my wildest of Google searches I have never once pulled up a Russian webpage. Canadian and British is as foreign as they come. How on earth do you find a website in Russia?

-Because I am totally crushing on italics as a form of emphasis right now.

-Because I have been married for 1465 days, Abigail is 347 days old, and there are only 13 days left until graduation.

-Because I love this blog. A lot. And I'm humbled that you are reading it.

-Because it is 7:52am on Monday in Moscow right now and 11:52pm on Sunday in Naples, Florida.

It is currently 11:53pm on a Sunday night and I am done blogging for now.

27 April 2012

Twotone and Swifteagle's Levitating Hamsters

Back when I was in college and blogs first became popular, I had a journal on Blurty. Whenever you posted an entry, you could select your mood and a little animal would represent it. For some reason, I chose hamsters. Anyway, if this were a Blurty entry from 2005, I would say that I am tired, calm, and lethargic. These are what my hamsters would like:


The hamster is the same for "tired" as he is for "lethargic."

I was revisiting a few old posts, ones that I wrote when Abigail was first born. It pains me to read how hurt and defensive I was. How many insensitive terms I used without knowing any better. I said things like "Downs baby," without even an apostrophe. I know better now. Now when people say, "Down syndrome baby," I think to myself: NO. She's a baby with Down syndrome. A beautiful little girl who happens to have Down syndrome. I think my fear and depression oozes out of every sentence. I hope people who read those posts read more current posts too. Realize that I've changed. I'm different. I'm happy.


People have been asking me a lot lately if I'm excited to move. Or if they're from Michigan, if I'm excited to move back home. I am, and I'm not. This is home, now. Florida. Right now the glass slider is wide open, the fresh, rich air floating through the apartment. The ceiling fan is whirling softly, creating the gentlest breeze. Abigail is resting on a bed of soft baby blankets. Matt is sitting at his desk, quietly studying. I like this apartment, the location, the layout. I wanna stay here for another year. One more year of a lanai with big glass sliders wide open. One more year of palm trees and geckos and white sand and powerful rain storms. But then I remember the hot, humid summers. Breaking out in a sweat in the time it takes me to go from the apartment to the car. Turning the a/c on full blast to cool down the greenhouse sauna that is the car. I think about the beautiful fall colors of a Michigan autumn, how it'll be way fun to go to a cider mill for my birthday; something I used to do all the time. I am and I'm not excited.


Matt recently met with a professor who advised that he should plan to dedicate 8-10 hours/day 7 days/week studying for the bar during the first half of the summer and 12-15 hours/day 7 days/week the second half. Each half will be about one month long. He told Matt to expect the hardest summer of his life. I knew that the summer was going to be intense, but I didn't realize it would be that intense. We're switching gears and re-orienting mindsets to prepare ourselves for the adventures that are to come. I am wondering how we're going to have Abigail's birthday party or if we'll be able to go up to his family's cabin over Memorial weekend or have an open house with such a demanding schedule. I am nervous about doing everything by myself, especially going to Chicago to find a place to live. Free, all-expenses paid trip to Chicago, anyone? All you have to do is help me take care of Abigail and go apartment hunting... I guess this summer will be yet another lesson in independence. I am hoping that I can revive some old friendships and commandeer people to go with me. Honestly, I don't think I will relax until we get settled in Chicago. The bar will be over, the moving will be over (for at least one year), and we'll finally have an income greater than our expenses.


Matt's last ever day of school was yesterday. Two weeks from tomorrow we will leave Florida. Three weeks from today is Abigail's first birthday.



Can I make two confessions?

1. We are thinking about more school for Matt. Oh geez. But this wouldn't happen for a few more years. Years that would follow paying off all our debt and probably buying a house. Maybe then we would send Matt back to get his Master's Degree in Economics. Part time. So he could keep working. I am an advocate of this route because Matt really enjoys Law and Econ, he is very good at it, and it is a very new field. There is a lot of room for growth and development. Because Matt is so intelligent, I think that he could find a niche, distinguish himself, and become known in his field. Hopefully one day.

2. I've been lying to you for a long time now. About Abigail's heart. See, we have always told everyone that there were no leaks after surgery, but the truth is, there was one. Let me explain. The larger of the two holes in her heart required a gore tex patch to be sewn in; to literally patch the hole. Well, the surgeon purposely avoided sending any needles through the tricuspid valve because apparently that is were the heart's electrical system is and it's invisible. If she sewed through it, there was a large chance that she would disrupt said electrical system, leaving Abigail with a permanently irregular heart beat. So there was a leak near the tricuspid valve. She expected scar tissue to form and plug the hole. We have been keeping a close eye on it with cardiology appointments and echocardiograms every 4 months. We avoided telling anyone because it was A. small, B. intentional, and C. I didn't want to explain the whole nine yards to everyone at every get together. I think we may have divulged our secret to a few of our medically-inclined friends, but that was about it. Anyway, the size of the leak was diminishing exactly as expected for this to be occuring. When we went to the cardiologist today, he said that the leak filled and and is completely gone. There is no more leak. Abigail still has a very tiny murmur, but he called it an "innocent murmur" and assured us that 2/3 of kids have one. She'll probably out grow it. She's 100% now. The cardiologist said he is not worried about her heart at all. If she still looks this good in 6 months, we can switch to yearly appointments. After a few years of those, we can switch to every-few-years appointments. Those are all our heart secrets. Now you know the true whole story. Even the one about the "innocent murmur," which I will also avoid telling people about when I recount the heart story. Because I like to talk about more than my medical woes at parties.

But I have no problem talking to you if you have questions.

So don't feel like you can't ask me about Abigail.

But don't feel like you have to, either.

We do normal kid things too.

Like have parties in the Pack 'n Play.
And have cuddly lethargic days.

Happy weekend, all. Monday begins The Packing Bonanza. But today? Today is the start of a happy weekend.

25 April 2012

Four Years and Many Happies Later

 Please take a moment to read my very short post from Monday! Abigail's future depends on it!

 * * * * *

Random Happies:

*Green hair:

Don't worry, it washed completely out after one wash. It was just a fun prank to get a rise out of my husband.

*"Freezing" temperatures that left kitty loath to touch the cold concrete:


I enjoyed breaking out Abigail's "winter" clothes, which I had put away sadly thinking we were done with cool spells. I dragged the old Pack 'n Play onto the lanai and Abigail played while I read.



Abigail's army crawl is getting pretty impressive. She can now scoot forward several feet and is starting to make her way towards me when she wants to be picked up. The kitties no longer feel safe.

*Gym passes. My gym pass officially expires today, and I must admit, I LOVED my gym experience. I tried almost all of their cardio machines, I had a lot of fun using the various strength-training equipment, I took a core class, and fell in love with a cycling class. I upped my fruit and veggie intake and was able to drop several pounds and two inches off my waist. I do not think I will make my pre-pregnancy weight by graduation, but I will probably be within 10 lbs. I will not stop, though, until I hit my ultimate goal weight, which is still a "few" pounds lower than the pre-pregnancy weight. I am determined to get to and maintain a healthy weight so that I can teach my children how to live a health life and so I can stop being "one of those people" who is always struggling with their weight.

*Edible Arrangements
Why did we buy ourselves chocolate covered strawberries, you ask? Well, let me tell you! Today is our 4th anniversary! Matt and I like to stick with the traditional anniversary gifts, and for year #4, the traditional gift is fruit and/or flowers. What a better combination that flower shaped fruit?
Daisy pineapple, anyone?

Four years ago today, Matt and I walked down the aisle of a little country parish with wooden pews and stained glass windows.

There are a lot of good stories from our wedding. Like how I bought my dress directly from the Chinese shop that makes dresses for David's Bridal and other American chains. My dress was cheaper than Matt's tux rental and just as good of a quality as any other store-bought wedding dress.
Or how my engagement ring is a Tiffany's that Matt bought on the sly. So sly, in fact, that neither he nor the estate jeweler realized it was a platinum Tiffany's band until they shook hands after the deal was made and Matt asked, "Does that say Tiffany's right there?"
Or how I had a bridesmaid drop out of the wedding 3 weeks beforehand. Not the above bridesmaid, however, she is my sister-in-law/RCIA sponsor/Abigail's Godmother/mother of my Goddaughter/best friend. She was also about 8.5 months pregnant during my wedding. Now that I realize how tough it is to be that pregnant, I give her mega props for doing it in heels at a wedding.
Or how I got a free upgrade on my flowers. Because I was married so soon after Easter and the church was still covered in white lilies, I just need bouquets and boutineers. I had planned to make them myself, but a few weeks before the wedding, I was drowning in to-dos, so I ran to a greenhouse. I told the lady that all I wanted were pink roses, while lilies, and for it to smell nice. I gave her full rein to follow her creative whims. The result? She told me she had so much fun designing them, she got carried away and threw in a bunch of bonus flowers. Apparently she was used to bridezillas and exacting directions.
Or how after months and months of calling car dealerships and rental companies and historic car clubs searching for a white stallion on which to ride off into the sunset, I finally settled on just dressing up the old red Contour when the week before my wedding, my uncle calls me up and says, "Hey, so I'm renting this car for work..."
Things went wrong too, lots of things, but these aren't the things we remember on our anniversaries. We remember the things that went right at the last minute, the things that were perfect from the beginning, and things that made us cry tears of joy.

We like to try new things to celebrate our anniversaries, so this year we are going rock climbing. Kind of. We live very near a family fun park, you know the type, with go carts and laser tag. And 24' rock climbing walls. We have a free babysitter (one mega joy of going to a pro-life school is that several of Matt's classmates adore kids and volunteer to watch Abigail on a regular basis), so we're also planning on taking a bike ride through the ritzy part of town and ending at the beach just in time for sunset. We're saving the fun activities for Saturday though; tonight we'll just cozy up on the last day of sweaters and jeans and enjoy some homemade Philly cheese steak sandwiches and chocolate covered strawberries.

23 April 2012

Save Abigail Money!

It's time for me to take a moment to unabashedly and unapologetically advocate for my child. I also want to take a moment to thank this girly over here for very eloquently describing the challenges of advocating.

When people ask me what the hardest part about being a special needs mother is, I have only one thing to say to them: advocating. Lots of little things are different about our lives because of Abigail’s bonus chromosome, but not necessarily more difficult. But advocating? That is a whole other story. We’re only 11 months into this and we’re already fighting the stereotypes of a society that aborts 90% of all babies with Down syndrome and explaining to people what they’re really saying when they use the r-word to describe a movie they thought was lame. I’ve heard stories from friends with older kids with Down syndrome how much more fun it will get when Abigail’s old enough to go to school or wants to try out for the soccer team or applies for her first job at the local grocery store. We want the same thing for Abigail that all parents want—for our child to be seen for her abilities rather than what makes her different. Without a doubt, the hardest thing about being a special needs mother is advocating to be sure that my daughter’s potential is recognized.

The National Down Syndrome Society recently sent me a heads up about a new bill, HR 3423, or the ABLE act, which would allow individuals with disabilities, including Down syndrome, to utilize ABLE accounts. Contributions to ABLE accounts would grow tax-free, would be easy and inexpensive to create, and could be used on “qualified disability expenses,” including education, residence, transportation, obtaining and maintaining employment, health and wellness, etc. ABLE accounts would be disregarded in determining eligibility for certain government programs. What does HR 3423 mean for Abigail? It increases the resources available to her, which gives her a higher likelihood of being able to live independently or making it easier on her caregivers in the likely event that she outlives her parents. Please note, HR 3423 does not expand the government in any way, shape, or form, it simply removes the tax liability from Abigail’s money.

Do you want to help Abigail out? Contact your House and Senate representatives and tell them to support this bill! Read the details, and find out if your representatives already support it by clicking on the “cosponsors” link here: House and Senate.

Connie Mack and Bill Nelson of Florida ARE NOT currently supporting this bill.
NEITHER of the senators in Michigan are currently supporting this bill.

How can you say "no" to those blue eyes?!

22 April 2012

Special Needs Ryan Gosling

This morning I logged online to show my husband that this week my blog received 46 page views from Russia. Russia! How cool is that! While I was checking out my stats, I noticed that I've had an abnormally large number of page views today, Sunday, which is usually my slowest day. (Well, a lot of page views for me and my humble blog). So I decided to write a special post dedicated to all my Sunday 22 April readers. If you are reading this on Sunday 22 April, you totally rock. If you are reading this from Russia on Sunday 22 April, you double rock.

As many of my female readers probably already know, there has been a Ryan Gosling meme going around for a little while now. The Hey Girl captions have been commandeered for countless different communities and the special needs community is no different. As far as I know, Special Needs Ryan Gosling was created by:
This particular blogger is mama to two boys with Autism, so most of her Hey Girls revolve around spectrum disorders, but a few deal with Down syndrome or are vague enough to refer to any special need. Anyway, I check them out and I laugh, but I have avoided posting them on my blog. I didn't want to demean my husband - make him feel like he wasn't good enough so I had to go out and fantasize about Ryan Gosling. I mean, who doesn't love themselves some Ryan Gosling, but if I were to choose a favorite male celebrity, I would definitely go for Matt Damon. Anyway, I recently realized that I'm way over thinking this. I love my husband, and he knows this. And just like he laughs at wife jokes, I swoon over Ryan Gosling Hey Girl memes. All in good fun. So without further ado, I now present Special Needs Ryan Gosling.

Any my personal favorite Special Needs Ryan Gosling:

20 April 2012

Growed Up

After the successful venture into the world of hair clips, I opted to try out some pigtails yesterday. The result? Mega cuteness!
I seriously couldn't stop oohing and ahhing and making a big fuss over her pigtails all day long. They were so adorable! But as I continued to admire, I soon realized I had no idea pigtails could be a sign of maturity.
As Abigail studied everything with her cute pigtails sticking straight out of the sides of her head, I realized how much different she looked with her new hairstyle. Even her physical therapist noted that she looked like a different kid. When I looked at her, I felt more like I had a toddler than a baby. But the truth is, I almost do have a toddler! I looked it up online and 1 year begins the official "toddler" status. No matter how little she is or whether she's crawling or walking, we are very quickly leaving the baby stage behind. These uncharted waters scare me; as she grows as a person, I need to grow as a parent. I want to make sure I guide her through these turbulent waters of independence and growth meets safety and security. I checked out the Dr. Sears Discipline Book from the library and plan on searching out Dobson's Raising Girls, probably once we get settled in Michigan. I am a very big Dr. Sears fan because I strongly agree with his premise, know your child and listen to your instincts, which you can develop using an attachment style parenting. The style works really well for us. When we're out and about, I know what our limits are and how Abigail is doing and what she's feeling in most situations, so I feel confident that I can make the best decision for our family. Plus the older she gets, the more discerning I become when I get bad parenting advice. I think surrounding myself with books I trust and moms I admire and make good role models will help me to become the type of parent I want to be.

Each of Abigail's new independent advancements is always accompanied by a new stage elsewhere in life that encourages bonding. Once Abigail began sitting up on her own and scooting forward, she suddenly re-instituted being rocked to sleep. It was pretty nice just being able to drop her off in her crib and continue about my work, but our cuddle time in the quiet room refreshes my soul and helps me keep my priorities straight. She has also been crushing on the sling, going so far as to clap when I bring it out. I think in a weird way, wearing her emboldens her autonomy. Maybe she feels more incorporated into the adult world? I'm not sure. I wonder if I wear her when we go shopping (as opposed to putting her in the shopping cart), if she would stop randomly crying when we go for walks. It's worth a try. (If it wasn't so hot down here, I'd wear her for short walks, but I always end up sweating, which means I sweat on her, so then she needs a bath and the sling needs washing.) But anyway, yes, grown up, pigtails, cuddle sessions. Raising a child is very, very draining, but very, very rewarding.

 * * * * *

Well, the countdown to graduation is on, as I'm sure you know because I won't shut up about it. One more week left of class then two weeks of studying and exams. I have heard about a million times that espresso is to coffee as the summer before the bar exam is to law school. Now for those of you who aren't hip to the coffee lingo, espresso is super-concentrated coffee. Super bitter, super strong. It's the kind of thing you drink straight when you want to pull an all-nighter. I've heard that bar prep is pretty much an all day, all week, super stressful, barely stop to eat dinner kind of thing. I've been trying very hard to reorient my thinking such that law school is not the end of law school. Abigail and I can go out and party with long lost cousins, but Matt will still need to dedicate a lot of time to the books. Matt and I both find it hard to believe that there won't be time to take evening walks together or watch movies on the weekends, but I am trying to not get my hopes up that we might be able to visit his family's cabin for Memorial weekend, just in case. More growed up decisions. Work before pleasure, responsibility before fun. Law school is a really tough thing to be married during. We both agree that marriage makes law school easier, but just like raising a kid, you have to put in a lot of work in order to reap the rewards.

Because I am a quick-packer, I have actually forbidden myself from packing up a single box until April 30th. I'm using my gym pass as a good distraction, which expires on our anniversary (new distraction), followed by a visit to the cardiologist, then poof - it'll be April 30th! That will give me 10 days of solid packing (well, with a few therapy and doctor's appointments scattered in there), which should be plenty. I decided that I will just pack on two different levels - what we'll need while in Michigan and what we'll store for the summer - instead of - Michigan summer stuff, Michigan long-term stuff, Chicago stuff. This does mean that I'll have to repack the packed boxes this summer, once we know where we're living and how much space we'll have, but what if we end up in a spacious, two-bedroom house in the suburbs and can bring everything? I will have wasted hours and hours this spring trying to guess how much space we'll have and what we'll be able to bring. The friends we're staying with for the summer have a large, virtually empty pole barn on the property so we'll have a place to keep the things we aren't using this summer and a good place to go through the boxes and re-pack once we have a signed lease. PLUS, Matt will have taken the bar exam by that point and will be of great assistance in the baby-watching department.
 
One final growed-up discussion before I sign off and head back to the real world. When we last left Michigan, we had a three-and-a-half month old baby who was barely a month out of open-heart surgery. Matt had already relocated to Florida and I was broken and hurting from the fear of a surprise diagnosis. I didn't know anything about Down syndrome and I just wanted to curl up in a ball and cry. For all our family members who aren't following this blog: End scene. They don't know how much I've grown and healed and how much Ds isn't a big deal anymore. They don't know about the things I still struggle with or how much more vocal I am. And I don't know where they are. I don't know what they think about Down syndrome or what stereotypes they have. I am scared that I will not be a good advocate. That I will not explain things well or that I will let emotion take advantage of the opportunity to educate. I have a few people in mind with whom I suspect it will be tougher to tango. There are a few people who I think will fight me long and hard on the use of the r-word (But I don't mean it like that; political correctness is a bunch of bs!) There is someone with whom I suspect we'll have words over our choice to have a baby in law school and to work from home. I have memorized what I will say to anyone who hints at abortion or says something that openly demeans Abigail. I hope that it won't come to any of this and that I am being overly prepared. I know we'll have little discussions It's actually "baby with Down syndrome," instead of "Down syndrome baby" and try to educate people who would prefer to think they know everything about Ds, and I hope I have the grace to navigate them without making anyone feel awkward or uncomfortable. This is a very adult role and I want to give it the attention it deserves without blowing it up into unnecessary drama.

Okay, enough seriousness. I hereby solemnly promise (get it?) to spend all of next week being happy, taking pictures of things uniquely Florida, and just generally bragging about the Perpetual-Sunshine State with the hopes of making all my northern readers jealous. Three weeks, folks! Suck that marrow!