Yo soy La Lay

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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Progress – Month 2

by Maggie

All of Tessa’s therapies are in full swing now, so here is an update on where she is and what we’re working on:

Developmental Therapy
We are working on bonding as a family and smiling. I think the bonding is going well… we kind of like her… a lot. Plus, she’s a good sleeper, which definitely helps her cause. 😉 Tessa is doing some social smiling, though not a ton. More than anything, we would like Tessa to smile at Ellie. It will come… it may come faster if Ellie would stop undressing her like a doll every time I turn around.

Physical Therapy
We are still hearing that Tessa is so strong!! The nurses called her “the swimmer” in the NICU because her arms and legs were always flailing. Now we’re trying to help her coordinate those movements a little more. It sounds odd, but she doesn’t know that her arms and legs are attached to her, so we try to encourage her to bring those parts in toward the body, like this:

Rather than her preferred relaxed position:

We do a lot of tummy time and also work on supporting her in a sitting position to gain more control of her neck. When holding her, we keep her legs from going “frog legged” as often as we can. Thankfully, she is loving sitting upright by Mom and Dad’s shoulders, so she gets a good workout in that way! She also throws her head back and extends her back a lot. They call it “extension” and while it is building strength, it’s not so great for her posture and physical development long-term. Again, trying to get her to bring everything midline (center) will help. We usually lay her on the floor between two rolled towels to help with this.

Speech Therapy
While Tessa is still eating laying down, we have much less gulping than before and she hasn’t choked on her food in quite some time. John went rogue and tried to feed her sitting upright, but she just wasn’t ready. Patience is very challenging, but I know she won’t eat on her side forever!! On a positive note, Tessa has found her hands and likes to chew on her thumb. I realize that this sounds strange, but different textures in and near the mouth are important! Also, to stimulate muscles, when we clean Tessa’s face, we always wipe toward the lips rather than away. Tummy time and sitting upright are helping her build up strength to eat in a typical manner. It’s so amazing how everything is related!

We won’t have an official re-evaluation until Tessa is 6 months and I’m curious to see where she is at by then. Babies change so much in their first year! This week, I packed away the newborn clothes (they lasted a lot longer with Tessa than they did with Ellie!). It goes so fast.

Tessa “stuck” in her towels. She doesn’t like it so much, but it’s good for her. 🙂

family

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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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You gotta laugh

by Maggie

Tessa has a onesie that says “50% Mom + 50% Dad = 100% ME!”

John says, “I think we need to change this to say “50% Mom + 51% Dad… actually, I should probably hope the extra chromosome came from you…”

Love this guy!

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This Beautiful Life

by Maggie

I only want to write about this one more time before I put this baby to bed.

I am approached by many people who want to know how or why I’m taking this diagnosis “so well.”

I want it to be abundantly clear that Tessa is my baby first. Sometimes, she is my baby who slept through the night at six weeks. Sometimes she is my baby who just loves to snuggle. Sometimes, she is my baby who came a lot earlier than planned. And sometimes, she is my baby with Down syndrome.

It is not wrong to feel sad, upset, angry, overwhelmed, disappointed, or hurt when you get life-altering news. My initial reaction was confusion. I distinctly remember laying my head against the bed, straining to hear what the nurse was saying to John while I was still delivering the placenta (sorry, male readers), and being completely bewildered. It became very urgent for me to learn what this meant for our little girl (whom I thought was a boy, which made all of this even more perplexing). But no one ever told me that she wouldn’t live a happy life, so why should I expect that she won’t?

Here’s the reality of Tessa’s beautiful life as I see it: in very rare instances, a person with Down syndrome may never speak. And so what?? Is her life not worth living if she never says a word?? How many times have words gotten me in trouble? How often have I caused pain, hurt, anger, or frustration with my words? And who would it really hurt if Tessa never speaks? Me? What do my feelings matter if my little girl is happy? What can I really want for her? To love and be loved. That is all.

Sometimes, Tessa might deal with disappointment, frustration, and hurt because of her different abilities. And so will Ellie. Believe me, both of my children will have to overcome struggles. If Ellie comes home and tells me that she wants to be a tennis player, I have to be honest, it will concern me a little bit. I’ve seen her try to walk quickly across a room…. graceful she is not. However, there’s no reason that she can’t work at it and accomplish what she wants. That’s how I feel about Tessa. If she wants to go to college, get married, fly to the moon, am I going to tell her no? Hold her back? Stop believing in her? I have no reason to believe that she won’t be able to do any of those things. Worse would be to tell her she can’t… or worse, to never have had her to love at all.

I accidentally stumbled into a support group online for women who had terminated their pregnancies for medical reasons. I was looking for other mom groups for families like ours and it was literally one of those situations where I scrolled and clicked too fast, ending up clicking the link that I didn’t intend to pick. I will not stand in judgement of these women and their decisions. I believe that it is between them and God. But I mourn for those little babies who will never snuggle on the couch with Daddy, who won’t get way too many kisses from their big sister, who won’t have the chance to love simply because of misunderstanding, misinformation, or a lack of confidence to be able to provide for the child. It is a beautiful life and I am so glad that Tessa is here to enjoy it.

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Yo soy La Lay

adventures in family, faith, and Down syndrome

A lack of productivity

Happy birthday, Love!

Lent

On Language

Unmotivated Monday.

Momma Bear is mad.

Progress – Month 2

You gotta laugh

This Beautiful Life

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