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My first date with Down syndrome

by Maggie

Almost exactly a month ago, I wrote about how I was trying to find my place in the Down syndrome community. I’m still working on that. Last night, I made some progress.

I joined a group called UPS for DownS. It’s a group for parent advocacy, social gatherings, etc. And last night, we had our first date. 🙂 Like any good potential partner, they sent me a little gift prior to our night out. Generally, I’d prefer flowers or chocolate, but this care package was pretty sweet:

I agonized over my outfit for a good part of the day. Should I be casual? Is a hoodie too casual? And I’m three months postpartum, so let’s be honest here, my clothes aren’t exactly fitting as well as they should. They don’t fit at all, really. After tearing apart my pre-pregnancy wardrobe, my maternity wardrobe, my post-Ellie wardrobe and a considerable number of clothes in the hamper that didn’t smell too bad, I settled on a sweater and jeans. I wore green… and for a second, I wondered if it was a faux pas to wear green the day after St. Paddy’s. Too bad. It was on, it fit, I was going with it. So then it was 3:00 and I wasn’t leaving until 5:30. Let the thumb-twiddling commence.

Just like when I was 14 years old going on my first real date, I took a chaperone, my mom (the children needed a babysitter, so John stayed home with them). We (I) nervously chattered away in the car. We got there too early, we went to grab some food, our waitress disappeared, then we were almost late… it was all very dramatic.

When we finally arrived, I was clearly the new girl. First of all, the evening began at 7:30. We arrived at 7:25ish and everyone was seated, chatting, wine in hand (yes, wine. OK, I’m at home now). My name tag on the table was accompanied by a blank information sheet waiting to be filled out. And there was a welcoming committee. It was quite sweet actually.

Since Tessa was born, I scan every room I enter for another child with Down syndrome, wondering if others actually do exist in my part of the world. I’ve always imagined that I would see them and be brave, say hello, introduce Tessa…. and here I was, in a large room filled with parents who have children just like mine… and I literally had no idea what to say. Everyone was very considerate, friendly, welcoming, concerned for my emotional health (which is quite good, thank you very much). After the presentation (on sleep apnea… which was fascinating and exhausting all at the same time), lots of moms came to say hello and invited me to keep coming back.

(One mom did mention my day-after-St. Patrick’s Day-green clothing. I don’t think it was a bad color choice, after talking to her.)

It was a successful evening and I think we’ll go out again. Maybe next time I’ll bring John to make it interesting. I don’t think that Down syndrome and I will be breaking up any time soon… we’re getting along quite well.

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A Day in the Life – WDSD 3/21/14

by Maggie

For World Down Syndrome Day, the Ds blogging community has been called to tell you all what life is like for us, The Families of a Child With Down Syndrome. This is hard because in my family, we’re in transition right now (or at least will be very soon). My maternity leave is slowly but surely coming to a close and I’ll be off to work before this month is over. My days right now are blissfully unremarkable. Sure, Tessa has a few extra doctor appointments and we do some therapy here and there, but in reality, the care of my newborn is not unlike the care of Ellie, my “typical” child, when she was first born.

We get up in the morning. She eats. I shower, she stares at the ceiling fan (it’s soooo interesting!). She eats, she pees, ~~she does her exercises~~ we play, she snoozes… and so the day goes on. After a few cycles of this, sometimes we go to the store. Sometimes, we put on music and dance around. Occasionally, she gets a bath. If her hair doesn’t get combed, she looks like this:

Later in the day, we get in the car to pick up Ellie. Our day gets slightly more interesting once Big Sister is in the house. Suddenly, the world is noisy. There’s Daniel Tiger on the TV, loud crashes of toys being tossed about the room, the microwave is running, Ellie is talking in a ridiculously high voice, shoving some stuffed animal in Tessa’s face, trying to engage her in play. When John comes home, there’s some rough-and-tumble play (Tessa just watches, I promise!), dinner, stories, bedtime. It’s all very uncomplicated.

Once a week, there is some therapy. The therapists come to our house and do exercises with Tessa. We do them too, when we play with her. It’s not work now, just purposeful play. When Ellie is here, she tries hard to steal the spotlight. Our PT always brings some special toys for Ellie and that helps. My house is a lot cleaner than it used to be.

Weekends are busy as they always were. We go to church, we get together with friends, we leave the kids with a babysitter and go out to a bar or to dinner.

My message, from a new parent to a newer parent, is this: In the beginning, when you hear that your child has Down syndrome, you stop breathing and think that your world has just turned upside down. And in some ways, I suppose it has. But mostly, you just have an infant to care for, one that is mostly like the other infants that you will care for, save for that pesky extra chromosome. There is some new language, you have some long-term things to think about, but you have time and resources and a community of supporters out there cheering you and your little one on each step of the way. Your child’s milestones are our milestones, we join you in your worries and doubts, your cheers of joy, your frustrations, your amazing breakthroughs. To the new parents, we support you, we’re here for you, and we’re proud of you. Welcome.

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The State of Our Union, 1st Quarter 2014

by Maggie

It’s hard to believe that 2014 is (almost) a quarter of the way finished. Spring is taking its sweet time arriving in our area. It’s been a rough winter!

And so an update on the family:

John and I

No one really wants to know about the adults… but it’s 7 AM on a Saturday morning and we are both showered, dressed, and ready to start the day… and yet, our small ~~bosses~~ children are sleeping the morning away. John is clicking away at his laptop, working on yet another grad school project and I’m sitting here with my ear pressed up to the baby monitor, desperately hoping to catch the moment when Ellie wakes up and realizes that Tessa spent the night in their room with her for the first time. Tessa has finally graduated from her pack n’ play-in-the-closet set up to her crib… but I digress. I’m talking about the adults, right? John’s at the point in his grad school that I was exactly one year ago. He’s tired (I’M tired) and feels like there is no end in sight. He’ll be finished in December and perhaps then we’ll have just a tiny bit of an ease in the chaos of life. Of course then I’ll probably get the itch to go back to school or I’ll take on some project that I really don’t have time for and we’ll be back to crazy. I think we kind of like it that way anyway. So John is grad-schooling and coaching and teaching…. and me? I’m kind of jealous. I just really need to go back to work.

Ellie

Our crazy (CRAZY) child has had another explosion of language growth. She’s already very verbal for her age, but now she’s connecting ideas and feelings, asking questions that are complex and interesting, and singing songs that are incredibly inappropriate for a two-and-a-half year old (totally my fault…….). She’s still a total klutz. My mom tries to tell me that she’s just too busy to really be careful where she is walking, but I’m fairly certain that she’s just the kind of athlete that I was…. not an athlete at all. We all have our strengths and weaknesses. She and I went out for a Mommy/Ellie date this week at Red Robin like we used to do before Tessa was born. We even got dessert. 🙂

Tessa

And then there is the peanut. She’s just about THREE months now. Suddenly, she’s very smiley and engaging. She’s making some other noises than crying. Her first noise was an “are you kidding me??” yelp. Now there are happy coos as well. Her physical progress is… progressing. In PT, we’re using some kinesio tape on her belly to help her build up strength in her core. She’s not able to lift her head up as well when she has it on, but I’ve been assured that she’s not regressing, she just has to re-learn to lift it using the correct muscles and posture. She also gets to start wearing “hip hugger” pants to keep her frog legs from turning into a long-term problem. We’ll see the developmental therapist next week, but I’m sure she will be happy to know that Tessa is smiling much more, maintaining eye contact (mostly with me), and when I move out of her vision, she looks for me. Small victories. And then there is speech. No progress to report here with Tessa. She’s still feeding in the side-lying position and doing well with that. I’m also more comfortable with it – and getting more comfortable letting other people feed her in that position. We were working on a transition to more upright, but she has had a cold for a few days and it’s hard enough to get the food in with a stuffy nose that we’re waiting until that clears up to experiment. For now, the focus is on holding her differently so that she gets used to being in a more upright position. We’re still doing some mouth-stimulating and working on the pacifier (though she has found her thumb and really likes it.

I made the mistake the other day of pulling out Ellie’s baby book and looking at what she was doing at 2-3 months. Well, I don’t know if it was a mistake, but it certainly hit me like a ton of bricks that Tessa is just going to take longer to do what her sister could. I’m wondering what this little girl is going to be like when she’s bigger!! Who will she be? What will she sound like? What will she do? Don’t we ask those questions about all of our children?? I’ve been forcing my way through the book Eat, Pray, Love for months (I have no idea why it’s taking me so long) and she wrote about these phrases that you chant through meditation to center yourself. I don’t meditate (do people really have time to do that??), but I do have my own phrase running through my head when I get frustrated: she will do it, in her own time. Sometimes I need to say it a lot, other times not at all. But it’s a reminder to me that we’ll get there. In her time.

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A lack of productivity

by Maggie

I am two weeks-ish away from the end of my maternity leave.

For the record, I don’t think time has flown by.

However, I am also in denial about actually working again. It has been so long since I was in front of my classes. Especially considering that no one (and I mean no one) could have imagined the birth of my girl would be what, and when, it was.

I’m looking around my home tonight at my half-finished projects, wondering what exactly I accomplished in the last three months.

Back in September, the big conversation in our house was ‘should I take 6 weeks or 12?’ I really like to work. I was afraid that I would be bored at home. I wanted six weeks, we compromised on nine. And as my nine-week mark passed this week, I have to swallow my pride and say that John was right on this one and I’m so thankful that I was able to be home with Tessa for 14 weeks total. (I hate to be wrong. I cried tears of joy when they told me Ellie was a girl simply because I was right and everyone else was wrong.)

When we decided on nine weeks, I made myself a list. I had big plans to get some serious work done around the house. I had books to read. There was even a Pinterest board created called “my lonely leave,” filled with crafts and projects to keep me busy.

And after nine weeks, I still have Christmas presents to be put away.

But I have accomplished so much… learned so much… grown so much. I’m comfortable going back now, though we haven’t come as far with Tessa’s feeding as I hoped. Still, it is enough.

My house might not ever be clean again, but it is enough.

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Happy birthday, Love!

by Maggie

(This is my second post in a month dedicated to my husband. My apologies. He’s embarrassed, which is kind of why I do this.)

The past weekend was so incredibly busy for our family, but also so joyful! We celebrated my husband John’s 29th birthday. I love his birthday because every year, I am reminded of how wonderful our friends and family are. We are so blessed!!! We always celebrate with a night out at a favorite bar that serves a variety of craft beers (as well as vodka cranberries…. which is why I’m still tired today). So many of John’s friends come out to have a drink with us. We were even joined this year by one of his best friends and his girlfriend, Aaron and Kim, who flew in from Kansas as a surprise!! So cool! I love Kim because she’s in a PhD program for child psychology and even when I tell her the craziest of stories about my children, she assures me that they are just fine. 🙂

As for the birthday boy…. for whatever reason, it seems that his birthday, March 10th, tends to bring great weather to the Chicago area each year. It’s probably very coincidental, but for as many years as I’ve known him, his birthday has been a take-off-your-coat-for-the-first-time kind of Spring day and today is no different. Tessa and I are soaking in some great Vitamin D today!! I think I pay such close attention to the weather today because of the story that John’s mom tells us every year about his birth…

When Judy was pregnant with John, he was quite a surprise. She did not even know she was pregnant until about four months into the pregnancy. As is common practice, they had an ultrasound to check on John’s development. At that visit, doctors could not detect any arms or legs on their precious little baby. When the doctor shared with them that John would have no limbs, he encouraged them to consider terminating the pregnancy. My in-laws were astounded, but took no time to decide that this was their child and that he would be born as God intended. Whatever he was at birth, he would be loved and cared for by his parents.

John’s birthday was weeks earlier than expected. It was a cloudy, cool day when Judy went into the hospital. After laboring for only a couple of hours, John was born weighing 5 and a half pounds, with arms, legs, 10 fingers, and 10 toes. Literally, when he was born, the sun came out, the temperature soared to 62 degrees (20 degrees above normal) and, as she tells us, all the nurses were taking off their sweaters and going outside to soak in the warm sunshine. This may be cheesy, but he has been bringing sunshine to all of our lives ever since!! I am forever grateful to my in-laws for their faith in God and in each other, that they would trust in Him and His plan for their family.

So to my wonderful husband, happy birthday. Thanks for being such a light in my life.

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Lent

by Maggie

Growing up Catholic, I’ve always done something to mark the forty days of Lent. I attend a Lutheran church now and there is, at least in my experience, much less emphasis on the “giving up” than what I had previously become accustomed to. However, it’s always stuck with me that we should, in some way, mark these days.

(In previous years, I’ve given up alcohol… this year, that ain’t gonna happen.)

As we chatted over dinner on Wednesday night, I asked John what he was going to do. He said “oh, the same thing I always do. Give up Sports TV. Except the Final Four, of course. What about you?” It kind of struck me in that conversation that he and I were starting to go through the motions of Lenten sacrifice. (God gave his Son for us and we can’t be inspired enough to give up beer and basketball? We need to refocus!!) Especially in a year when Ellie has become very cognizant of who is doing what and why, I feel the need to step it up. Not just for her, but for me, too.

After a day of soul searching, I got the knock in the head that I really needed. Our blog friends over at David and the Giant posted this list of 40 Random Acts of Kindness and immediately, I texted it to John to ask what he thought. He was in! I was in! We may be a couple of days behind, but we’re doing it.

Here is our list. We have modified from David and the Giant to fit our lifestyle. 🙂

Pass a gift card to the person behind us at Panera
Send a “hug” in the mail
Donate toys to a shelter
Bring my children’s child care worker a yummy dessert
Relay an overheard compliment
Sign up to help at Feed My Starving Children
Pay for the person behind me at Starbucks
Bring treats to the nurses at the NICU
Donate books to the library
Send a note to a family with a baby in the NICU
Hold the door open for a stranger
Leave my Postal worker a thank you note
Mail an old picture to a dear friend with a note about the memory
Put a lottery scratcher in a library book for the next checker-outer to find
Send a thank you card to a favorite Grad school professor
Write a positive review on Yelp for a place I loved
Donate clothes to Good Will
Bring coffee to a coworker
Let someone go in line in front of us
Send a letter to a former co-worker telling them what I appreciated about them
Say “hello” to people in the grocery store
Leave a thank you note for our Pastor in the offering plate
Change my Facebook status to a compliment of one of my friends and tag them so all of their friends can see
Bring Ellie and Tessa to visit a great-grandparent
Have Ellie mail a card to a friend
Donate baby clothes and blankets to the NICU
Bring healthy snacks to leave in our shared offices at work
Clear our neighbor’s sidewalk after snow.
Call a restaurant where I received great service and compliment the employee to their manager
Leave a big tip when we go out to eat with a kind note
Have Ellie color a picture for a friend
Pick up trash in the common areas around our house
Return someone’s shopping cart
Bring flowers to someone special in our life
Use my blog and Facebook to ask friends and family to donate to the National Down Syndrome Society (NDSS)
Offer to help a coworker finish a task
Pay a compliment to the trickier students in our classes
Donate canned goods to a food pantry
Leave a bag of candy at our neighbor’s
Share a positive email with a parent

For more really awesome ideas for Random Acts of Kindness, check out http://www.randomactsofkindness.org/

http://www.joyshope.com/2011/10/happy-sunday-with-printable.html

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On Language

by Maggie

Words are so powerful. The problem is that words are also so tricky.

My life’s work is teaching students how to use new words to express themselves… to get what they need, to make a new friend, to experience the world differently. The excitement of a student on a Monday morning who used Spanish to order in a restaurant on Saturday afternoon is beautiful. 16 year old teenagers beam from ear to ear as they tell me about how they understood someone in the checkout line at Jewel. And I beam right back.

One of the difficulties in teaching language is helping my students understand the differences in culture that can evoke strong emotion when a word is used incorrectly. As a study abroad student in Ecuador, I lived with an absolutely wonderful family. Toward the end of my stay with them, my host brother commented on how my host sister and I were similar. He said that she and I are very intelligent, but like to have fun. Trying to agree with him by saying that we are both kind of silly, I used the word “estupida” to describe my host sister and I. Now, my Profe Junkroski taught me better than that back in my first year of Spanish, but in my rush to get my feelings out, I used a word that carries a much stronger meaning in Spanish than what I wanted to convey. Her face flushed, as did mine… it was painful and awkward.

This is what happens when someone uses the word “retard” or any of its various forms.

Let’s not mince words here. The fact of the matter is that my child will most likely be mild to moderately mentally retarded. That is an accepted and appropriate way for a professional to refer to her slower-than-typical cognitive function. But it is not a word that is used to describe her as a person, nor is it appropriate for describing a mistake, or a rule that one might find bothersome. It does not describe a friend who has done something silly, nor any other person or experience that is disagreeable.

You see, context is the tricky part of language. And even the most mundane of words that we chose can evoke strong feelings in those around us. Don’t believe me? Say the word “mom” in front of someone who has just lost their mother or “pregnant” around someone who is struggling to conceive a child. Don’t care? That’s very sad and unfortunate for you.

The reality is that we do not know the intricacies of the minds of those around us. The joyful thing about language is that we have lots of words to use! I’m not suggesting that one must avoid any and all words that could possibly evoke a negative reaction. That is just impossible and quite unnecessary. Again however, the word “retard” is only an appropriate way for a professional to refer to someone’s slower-than-typical cognitive function, and even there it is falling out of favor. And rather than using the word “retard,” there are so many other ways to express ourselves that won’t turn the insides of our fellow human beings into knots.

When I called my host sister stupid, she and my host brother very graciously explained that the word I was looking for was “tonta,” with a meaning more similar to silly, which is what I actually meant. If you hear the “r” word, might it be possible for you to do the same?

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Unmotivated Monday.

by Maggie

Last week was a busy week, the kind where each and every day you fall into bed exhausted, but can’t sleep because of the list going in your brain. Most notably, we celebrated Tessa’s baptism (or, bathtism or paptism as Ellie called it… can you imagine a paptism???? No thank you.) and the week of preparation was intense. However, we’re out on the other side of it now, with a happily cleansed child, newly developed colds, and a boatload of chili left in the freezer. Pictures will come later, but I’ve decided that today will be “Unmotivated Monday,” so clearly an iPhone sync is not going to happen today.

As I’ve gathered from reading so many other moms who write about Down syndrome, and as I am quickly realizing, it is a tremendous task to not be fully consumed by my child’s differences and needs. Compared to Ellie, Tessa has seen more doctors and had more appointments, has taken up more brain power and bookshelf space in two and a half months than in Ellie’s two and a half years. When Ellie was born, I didn’t think twice about my only 7 weeks at home with her before returning to work. Tessa will be 14 weeks when I head back at the end of the month. While anxious to be back at school, I cross my fingers that it will be enough.

Today, there will be no focused exercises. Besides running the dishwasher (because my child needs to eat and who wants to wash a dozen bottles and all of their pieces by hand?), the house will remain a mess. Tessa and I are still wearing our clothes from last night. We’re watching crummy TV and eating leftovers. The books and websites are closed, the phone is on silent. I do plan to make dinner, but also wouldn’t be surprised if another Chili’s To Go bag ends up on my kitchen table tonight. And all of this is just fine. As long as Unmotivated Monday doesn’t turn into Tuckered-out Tuesday and Wasted Wednesday, rest. is. good.

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Momma Bear is mad.

by Maggie

This is how I feel right now:

(Thank you to the creator of that beautiful meme.)

No one will get in your way, Tessa. From mother to daughter, that is my promise to you. YOU have a life worth living.

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Fruit Day

by Maggie

It’s fruit day. Ugh.

Occasionally, when I find myself veering off the healthy eating path, I do a slightly modified week of this crazy diet (found here) to help get me back on track. I have found that it really helps me cut a lot of cravings and brings me back on track.

However, day one is brutal. 24 hours of nothing but fruit. Originally, I thought this sounded glorious!! I love all kinds of fruits! What could be so bad about a day full of fruit?

Except now it’s noon and all I really want is a pickle. Or lettuce. Heck, I’d even take a brussel sprout. Anything but sweet! The day just makes me really cranky. Which makes it a perfect day for me to ~~write~~ vent about the financial future of my daughter and the ABLE Act.

This is long and complicated, but as the law currently stands, when Tessa is an adult, she will have to stay “poor” in order to continue to receive any services that she may need. How poor? She will not be able to have “resources” of more than $2000 or she will no longer qualify for things like Medicaid or Supplemental Security Income. Under the law, she cannot have a college savings account, real estate, a retirement fund… the list goes on. If John and I die before she does, we cannot leave money in her name to provide for her future. There are some loopholes here, but with the advances that have been made in understanding the development of children with Down syndrome (and many other disabilities), the system in place is antiquated and needs to be replaced. These children can go on to higher learning. They can save for retirement. They can do many, many things that we may not have thought possible!

Current legislation aims to make those changes. A few days ago, I posted a link to a petition to urge the US House of Representatives to pass the ABLE Act (here’s the link) so that Tessa could potentially save for her own future. And here is where I get frustrated.

Many, many, many people that I know, love, and appreciate, signed the petition and I am forever grateful that they have taken the time to do so. The goal is 300,000 supporters and I’ve been watching for a week as the number has slowly ticked upward. We are still short a little over 65,000 signatures to reach the goal. And last Thursday, after the controversial Women’s Figure Skating Olympic medals were awarded, a new petition to remove anonymity from figure skating judges attracted over 2 MILLION supporters in less than 24 hours.

I’m sorry, what?

Which is the lesser cause here??

Admittedly, I probably would not know anything about the ABLE act if it were two and a half months ago and Tessa was not here yet. I would still support the darn thing, if I knew about it, but there has to be some way to make people aware of the bigger issues. This act affects more than just people with Down syndrome. It’s for all individuals with disabilities (or as we’ve come to call them in our home, different abilities). It matters. Certainly a lot more than some silly figure skating competition.

I think I’ll go eat a potato now.

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Yo soy La Lay

adventures in family, faith, and Down syndrome

My first date with Down syndrome

A Day in the Life – WDSD 3/21/14

The State of Our Union, 1st Quarter 2014

A lack of productivity

Happy birthday, Love!

Lent

On Language

Unmotivated Monday.

Momma Bear is mad.

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