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On letting go

by Maggie

I shared the following exchange on my Facebook page recently. I was speaking with one of my students. All of the kids are fairly “at risk” (struggling to maintain good grades) and this particular girl has been feeling very overwhelmed and unable to catch up. She spent awhile telling me that she felt like she just can’t learn. And then she told me this…

People really don’t know Down syndrome.

47 chromosomes. Low muscle tone. Ability to exceed expectations. People-first language. Sensitivity to people with different needs. Highly insulting nature of the “r” word. Some people know. Many, maybe even most, do not.

I cannot hold someone accountable for what he has never been taught.

I wrote on Friday about how it drains me to hear the “r” word. In the moment, it’s really crummy. But it’s Sunday now, and I don’t even remember who the kids were that said it. One of my dearest blog friends (who shares her amazing story here) asked me if I had any tips on how to deal with it. My approach comes down to three things:

1. Teach: Remember that people don’t “get it” and we have to teach them. The intention of a person who uses the wrong terminology (like “Down’s baby) is not usually mean-spirited. Sometimes it is. Still, we can very simply explain and correct. When it comes to the “r” words, I usually say something like “hey, so that word kind of bothers me. Could you use something different?”

2. Don’t preach: Remember that it’s highly personal for us, but not for them. Ranting and raving doesn’t help. I realize that it should be common sense to avoid the “r” word, but it isn’t. Venting at length does nothing more than make people feel uncomfortable with me. I cannot win all the battles and I win less when I fight with anger.

3. Move on: Let it goooo, let it go! (Are you singing in your head now??) Sometimes, I have to come home and vent to John, but then I stop dwelling on it. For me, the best way to move forward is by treating it as minor in the first place. My student who thought she had Down syndrome? That situation could be handled in three ways… I could ignore it (and probably get mad when it happens again), I could be angry about it (and make her feel upset and I’d probably end up a crotchety old woman), OR, I can see it as a chance to open someone’s view of the world.

The bottom line is this: just as I wouldn’t expect the average Joe on the street to understand the complexities of my child’s needs, neither can I expect that he would understand the feelings that I carry about this beautiful child. When it comes to interacting with the world, I choose empathy. I choose compassion. I choose love. And while I cannot expect the rest of the world to make that choice, I can choose to lead by example.

Language and Feelings

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(untitled vent.)

by Maggie

I do a lot of language correcting when hanging out with teenagers all day. Normally, I don’t hear the word “retarded” on a regular basis. In fact, I could really count the number of times, Before and After, that I had to correct it on one hand. In a high school setting, that was promising. It seemed like maybe, the word was disappearing.

Until today.

3 different kids in four hours. Each kid got a lesson. One poor child even got pulled into my office and shown 47 pictures of Tessa all over my walls.

Every single time, it drains all of my energy.

I wonder if that ever stops?

What the heck, man??

Language and Feelings

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Lesson #31: There is beauty in this change

by Maggie

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence. And, a new ab binder.

If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.” I still wonder, on occasion, if the tattoo that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad was more than shocked by this. In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.” Um. Thank God I am not the person that I was when I was 17. Seriously. With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles. Grow. Learn. Experience.

Change.

Listen to the stories of others. Open your heart to what they are telling you. Seek to understand, to support, to love. Be compassionate, caring, empathetic, kind. Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her. She doesn’t have to perform any great miracles or bust through any stereotypes. But maybe, just maybe, she will teach someone how to love. Maybe someone will connect with her in a way that will open their heart to more patience or acceptance. Maybe her smile will make a difference on a bitter day. Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook. Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

family Language and Feelings Tessa

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Lesson #27: Great nurses rock our world.

by Maggie

While we have had our share of nurses that didn’t make us swoon, Theresa and Jan are forever ingrained in my heart as Heaven-sent women who were exactly what I needed at exactly the right time.

Theresa met Tessa within her first minutes in the NICU. They bonded right away because of their common given name (little known Tessa fact: she’s actually a Theresa) and very quickly, Theresa claimed Tessa as her patient. Theresa was outgoing and athletic. Tessa has been our little scooter/swimmer/mover since long before she was born. These two were kindred spirits from the get-go.

Our new little baby, exhausted from a feeding

Within the days that followed, Theresa and I chatted (and chatted and chatted) about everything under the sun while we waited patiently for Tessa to be well enough to come home. I told her about our family and Ellie’s crazy antics. She shared stories of her childrens’ wrestling tournaments and other quirky behavior. We talked about the struggles of now being a mom of two. She encouraged me to take breaks to enjoy my older daughter. At times, there may have been a few tears, but goodness, did we laugh!! On more than one occasion in the week we spent tucked into that little corner room, other nurses from the floor came by and shut our door because we couldn’t keep the volume down. We got a lot of “looks.”

Totally worth it.

She was exactly what I needed. Theresa loved my little girl immediately. She forced no unsettling stereotypes on us. She helped me feel normal during a very unusual time.

She came in on her day off (which happened to be Christmas Eve) to say goodbye as Tessa was discharged. We all cried.

Home at last…

Jan was a different kind of perfect nurse.

In April, I was frustrated. Overwhelmed with a hectic schedule, not able to get my students back on track after my maternity leave, tired of being a Grad School/Track Coach widow, stir crazy for warm weather, broke, and cranky, pneumonia struck and we spent a well-documented week in the PICU (here is the start).

Pitiful. 😉

When Jan was assigned to Tessa, I was a little worried. She was no-nonsense. She was pushy. She was on duty for the next week with only 24 hours off.

She was exactly what we needed.

There was no pity. There was no woe-is-me. We were to get the baby well and get on it with. Jan was caring and compassionate, but she was on a mission to get our girl discharged. And so we did.

Freedom!!

We are so fortunate to have been under the care of these amazing women. While I pray that we don’t end up back in the hospital, if we do, I hope that we will be lucky enough to cross paths with these ladies again!

Uncategorized

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Lesson #24: She’s just another leaf

by Maggie

I have had very few negative thoughts regarding Down syndrome. But I’ll let you in on a little secret: for several hours after she joined our family, I was terrified about family pictures. Somehow, in my brain, I had decided that family and friends would no longer want to take pictures with us because they would not want to have a picture of Tessa hanging on their living room wall.

This is, without a doubt, the most ridiculous thought that I have ever had, bar none.

(Except for maybe the night in college that I thought a bottle of Jack Daniels and some Dixie Cups would make for a good night. But that’s a whole other story.)

Since she arrived, Tessa has been just another leaf on the family tree. She’s different, but we all are. And not one person in our family has taken her as anything less than that.

Being a part of the community of families with children with Down syndrome, I hear a lot of stories. Most are positive. Sometimes, however, a mom comes looking for advice on how to deal with family/friends who are struggling to accept her child. There are families who refuse to acknowledge the baby, or who won’t hold it, or those who treat the child differently through words and actions. My heart really aches for those families. It also overflows with love and gratitude for my own.

(Just to clarify – when I say “my family,” I am talking about the whole dang thing, from both John’s side and mine.)

When Tessa was born, I did a really poor job of allowing other people to process our new situation in their own way. No grieving was allowed on my watch. Whether I should have let go of that control is a question for a different day, but in reality, I don’t think anyone would have grieved anyway. Because this is how life really is:

Tessa has four doting grandparents, who love her fiercely and in completely different ways. They are teachers, snugglers, cheerleaders, and many times, the glue that keeps John and I running smoothly when life is exceptionally busy.

She has aunts and uncles who hold her and play with her as they would any other child. She adores them. If there is one thing that we have learned about Tessa’s personality, it’s that once she has attached herself to you, her eyes will look so deep into your eyes that you’ll swear she’s looking right at your soul. All of her aunts and uncles get those looks.

Tessa’s cousins make her giggle. They poke and prod her, motivating her to get moving. They give her kisses and pull her hair and sit on her and take her toys just like they would with any other child.

I could not ask for more.

(this pic was taken by my fabulous cousin, Jessica. It’s blurry now for lots of reasons. 😉 )

photo (17)

family

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When you can’t hold all the babies you want

by Maggie

In the moments following Tessa’s birth, after the doctors and nurses left and it was just John, my mom, and I, we processed.

I write to you today having just had a “conversation” with another blogger whose daughter also has special needs. I want to explain to her – and you – why my reaction to a life-altering diagnosis was fairly mundane. While there are many, many life reasons that are a part of it, two stick out most prominently.

My mom hadn’t been in the room when Tessa was born and diagnosed. She had just shown up to the hospital to bring John some lunch and to keep me company while we waited for the baby. While I believe that she knew the baby had arrived before she entered, she essentially walked into our strange post-birth vortex on accident. I don’t remember telling her about Tessa or Down syndrome or anything else when she arrived. Maybe she remembers those moments, and maybe someday I’ll get her to share them with all of us, but having her there was one of the catalysts for just moving forward. Soon there would be other family arriving to meet our girl and I sure as hell wasn’t going to have a pity party after I had just given birth.

Besides (and probably more importantly), the road to Tessa was not smooth. When couples set out to have a family, nobody tells them how hard it can be to get the family that they expect. It’s hard for me to not feel envious that for some people, the “having a baby” part is so easy… especially when they take it for granted. For us, it has not been so.

Our first baby was not planned. We were set to head off on a three week road trip and while packing, it dawned on me that I hadn’t had a period in… awhile. I took a test, it was positive, and we freaked out. We told our families. We bought a little AC/DC onesie. We had an ultrasound and saw its little heartbeat. A week later, after another ultrasound, we learned that the baby did not survive. Nine weeks in the womb. My body did not naturally miscarry, so a D&C followed soon after.

Next was Ellie. We know how that turned out. She is wild. (And, currently involved in quite the love triangle at daycare. Good Lord.)

We planned the next baby for a time that was going to be convenient for us (or so we thought). It took a couple months, but soon there was another positive test. In an attempt to calm my nerves, my doctor let me have blood draws to check my hormone levels. They didn’t behave as they should. It was not looking good. I carried that wee one for 10 weeks before we had official confirmation that she would never be born.

Genetic tests following both of my D&Cs found no abnormalities in either child.

I carry those babies around in my heart and think of them most days. Mostly, I imagine that a woman who died before having children might be holding them in Heaven. Maybe that’s crazy, but it helps.

John’s reaction to Down syndrome was more typical. He mourned the baby that we had planned to get but didn’t come. He worried from the moment she was diagnosed. He wondered what kind of life we would all have. I’m certain that my own attitude made him feel badly about his reaction.

If you are struggling with your child’s diagnosis, please know that you are not alone. His reaction wasn’t wrong and neither is yours.

In a moment of sheer panic, John turned to me and asked how I could possibly be fine with “all of this.” My response was simply that when you don’t get to hold all of your babies, the ones that do make it just feel even more miraculous.

That is why I can take this in stride. Tessa’s very existence on this planet is something that not all babies will get to experience. I am so desperately thankful that I have been able to hold and tickle and kiss this little being. That is all. Because we don’t always get to hold all the babies that we want to.

family Language and Feelings

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Down syndrome doesn’t suck.

by Maggie

I don’t prefer to give most people who berate and belittle people with Down syndrome any consideration. But I just need you to understand something very important today.

Down syndrome doesn’t suck.

I’ve watched a lot of really, really crappy things happen to great people recently. Pain beyond my ability to comprehend surges through the hearts of new parents kissing their babies goodbye too soon. Families devastated by poverty, war, hate. There are absolutely horrific events happening all over my community… all over the world.

And apparently, the birth of my baby girl is one of them.

Recently, Richard Dawkins, a famous geneticist and author (among other things… a**hole being one of them) told a mother expecting a baby with Down syndrome that it would be immoral to continue with her pregnancy, given that she knew about the condition. He said that people should try to “reduce suffering” when they can and that bringing a child like Tessa into the world isn’t right because she will suffer and won’t contribute to society.

But, Mr. Dawkins, what you have failed to realize, is that in her eight months of life, she has already contributed to society. Probably in a better way than you ever could.

Tessa’s smiles light up the faces of family and friends who have long been searching for something to smile about. Some of her loved ones glow in a way they never have before when they see her. The very feat of her existence, beating obstacle after obstacle, has inspired people to do more, try harder, go farther. She has changed the way teachers do their jobs, influencing the education and experiences of an incomprehensible number of children. She has helped people forge relationships that haven’t been strong before. She has been in the world for 247 days and she has made an impact.

Tell me that our world doesn’t need more positivity? More love?

I know a lot of people with 46 chromosomes who suffer or who don’t contribute to society. In fact, they sometimes make our world worse. You made it worse. You perpetuated an outdated, unjust stereotype. You devalued the worth of my child. You scared a mom who doesn’t need to be scared.

People who receive a prenatal diagnosis of Down syndrome deserve accurate information about their child’s future. If you can’t give accurate information, please don’t give any. Next time, send them to the Down Syndrome Diagnosis Network.

Rant over. Special Needs Mom Law #3: Let it go.

Done.

She is so loved.

Language and Feelings Uncategorized

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Team Tessa Rocks Chicago

by Maggie

The last week and a half was so busy and went so fast that I’m trying to figure out if it actually really happened or not. I’m looking forward to sharing some pictures from our great vacation in Saugatuck, Michigan. But first, we had the most amazing day on Sunday. Team Tessa absolutely rocked the Chicago Rock n’ Roll Half Marathon and 5k!

We raised over $5,000 for our favorite parent support group, UPS for DownS and were the top fundraising team for our group. When totaled, all of the runners who came out to race raised over $34,000!!! Amazing!!

Team Tessa is ready to race!!

While the day started a LOT earlier than any of us would have liked (especially me, as we were at a wedding the night before…), it was so cool to walk through the city early in the morning, watching the sun rise up over the buildings as 30,000 runners made their way to the starting line. Ellie was very excited to see the skyscrapers and to wear her Team Tessa t-shirt.

Ellie can’t believe that she has her two favorite people, her grandmas, (almost) all to herself!

As we waited for the race to start, Tessa managed to have her own little monumental moment… she held her bottle on her own for two full ounces!! I was able to send this picture to John right before he started running:

But apparently, that milestone really took it out of our little rock star, because she slept for most of the rest of the race…

Ellie had a great day too, despite the fact that she got up at 5:00 in the morning. She managed to be three-year-old-meltdown-free until we didn’t let her take off her shoes in Subway after the race. She loved watching the race with her Papa.

Somewhere between miles 4 and 5, we saw some of the racers. Clearly, they weren’t too worried about their time, because they took a second to say hello!

Waiting for the finish, the Team Tessa supporters who were able to come to the race on Sunday gathered for a cute picture.

While I hoped to catch all of our runners out on the course, three of them were just too fast for me. But here’s a picture of John and Uncle Mike crossing the finish line:

It was such an awesome, inspiring day. We met some great people, enjoyed the great city of Chicago, were blown away by the supporters of our group… and were amazed at the outpouring of love and support from our family and friends. We can’t wait for next year’s event!!

family

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5 years

by Maggie

Love is friendship set on fire.

It has been five years since this monumental day:

When I first met John, he was stumbling into our 8:30 AM introductory Education class, decked out in his wrinkly pajamas, looking like he hadn’t bathed in a week.

It wasn’t exactly love at first sight, but he was certainly intriguing.

We were friends for a long time. I liked him because wherever we went, whatever we did, we had fun. He liked me because I bought him breakfast when he was low on cafeteria points.

As our friendship grew into forever, our friends joked that they couldn’t believe that it had taken us so long. And when he proposed, on one knee in front of 300 students and faculty at the prom that we were chaperoning, there was not a doubt in my mind that this is right.

We had one argument in the wedding planning process. I wanted a nice car to transport us to our reception. Mindful of budget, he suggested a bus. I’ll let you in on a little secret here: while 99% of the time, John likes to let me be the boss (something I appreciate tremendously), when he puts his foot down, I listen (no one in my family will believe this). We got the bus.

We vowed to love God first, then each other. We laugh every day. We argue. We pinch pennies. We complain about each other. We bond over America’s Got Talent and the amazing Jon Stewart. We have grown our family in the desire to love every minute of our life and we do.

5 years. 1,825 days. 43,800 hours. 2,628,000 minutes. 1 mortgage. 4 different jobs. 1.75 Master’s degrees. 2 beautiful girls. 2 sweet angel babies. 21 states. 3 countries. 75 viewings of the movie Frozen. 1 NICU stay. 1 PICU stay. 3 half-marathons (those are all him, but I’m a great spectator). 1 mission trip. 4 anniversaries in a car. Approximately 200 rolls of sushi and Lord knows how many ice cold beers.

It has been a wild, crazy, beautiful, wonderful, roller coaster ride. I’m so thankful that, through it all, he is my constant. We are not who we were when we said our vows five years ago. Praise the Lord for that. Stronger, closer, fiercely in love with each other, with our family, with our life. Whatever comes our way, we walk together.

Happy anniversary, Jefe. There is no one better for the celebrations, no one better for the trenches, than you. What a beautiful life we have been given to lead together!!!! (Did I get enough exclamation points in there for you? Maybe I could add a couple more?!!!?) I love you more than the sun and the stars. Thanks for sticking with me. Love, Mags

faith family

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Guest Blogger Post – A Dad’s Perspective

by Maggie

Because it’s Father’s Day, I have invited my husband to write about our life from his perspective. I took the liberty of adding in a few pictures… and a few commas. 🙂 Enjoy!

– – – – – – –

Four days ago I was asked to be a “guest blogger” for a post about Fathers’ Day. After some deliberation, I reluctantly accepted the invitation. The blog is really Maggie’s thing and I have never had the desire to contribute in the slightest. Needless to say I began this process by thinking I was doing her a favor by posting and now I realize she was doing me a favor by letting me think more deeply about what is so great about Father’s Day. Let’s start from the beginning…

When I was growing up, I remember going to a hardware store with my dad. As we walked into the store, I noted a bright orange sign that said “Buy one, get one FREE!” Being young, I said to my dad, “Hey, Dad, look! We can get something for free.” My dad knelt down, held both of my shoulders in his hands, and looking directly into my eyes, he responded with an even tone:

“Son, nothing is free.”

Of course, he was correct. Everything in this world costs money. It costs money to eat, it costs money to live, it even costs money to raise children. But this weekend reminded me of what is truly important in life and it had nothing to do with cost.

Every year for Fathers’ Day, Maggie plans a quick vacation with our family. We usually go to the Quad Cities, the area where Maggie and I attended college, to reminisce and walk the campus of Augustana. This year our trip was scheduled for 24 hours. We departed at 4 o’clock on Thursday afternoon and we arrived home on Friday at around the same time.

Two hours in the car felt like four. Apparently Ellie likes to hear herself talk and Tessa is not to be outdone, so she growled the entire time. When we arrived in the Quad Cities, we got Ellie some ice cream… which promptly ended up all over her clothes, face, and the ground. I had to admit I felt good for letting Ellie make a mess. Why not, right? We are on vacation and if she wants to dump ice cream all over her shirt, more power to her.

It wasn’t long before we arrived at the hotel and Ellie tested both beds to see which one was more “springy.” For a bit of extra fun, I took Ellie on a ride on the rolling luggage cart through the hotel. Ellie thought every second of the ride was hysterical. I enjoyed her laughter, but especially enjoyed all the strangers who walked past us and smiled. It was clear we were having too much fun breaking the rules.

That same night Ellie refused to fall asleep until 10:30 at night. She relentlessly declared across the hotel room, “I am still awake you guys!” and we had to keep reminding her it was time to go to sleep. Apparently she doesn’t care what I say (she is her mother’s child). On the one hand, I was annoyed that my daughter would not be quiet, but on the other hand, she was having so much fun she didn’t want to go to bed. She wasn’t rude, she was just excited… and I couldn’t keep a straight face when I scolded her for not going to sleep.

The next day we all went to the pool, the John Deere museum, a children’s museum, and lunch at one of my favorite restaurants in town. Ellie spent the day swimming, pretending to drive a tractor, and playing with a million toys without having to clean up.

If I had time, I could go through a million stories about each and every part of the day, but all I can tell you was that both of my daughters smiled for almost the entire twenty-four hour trip. Not only did they smile for the entire trip, I couldn’t help but enjoy the company of my family and all of the fun things we enjoyed. I laughed more times than I could remember and even though I was exhausted (which is the status quo), I just couldn’t bring myself to wimp out and not have fun with them.

My dad was right that nothing is free in this world. But that is the least of all the lessons he taught me. He taught me to take the time to stop and enjoy life. He taught me to not be concerned about meaningless trials and tribulations. Most of all, he taught me the biggest payoff of being a father is the time we spend with our children. Nothing is free in this world except for our time. The time we have to spend with our families is totally free and can lead to some of the most amazing and fulfilling memories.

When I look around and see all of the other fathers I know and respect immensely, they all have one thing in common: they take the time, no matter how things are going, to enjoy their children. I learned this because my dad put me first and it was rewarding for me, but now I see it was rewarding for him as well.

Being a father is never easy. Sometimes we wish our kids would give us a break. Sometimes we wish we could just get away for awhile. The reality is that we are not perfect and we don’t always focus on our kids the way we should. But we also need to remind ourselves how much we can be filled up with love just by spending time with our family. The sports on television don’t matter, the job doesn’t matter, the kind of car we drive doesn’t matter. The only thing that matters is the effort we put in to loving our families. We will see the results in how we live and how our kids live. This is not my advice, it is the advice of my dad, and for what it is worth, it has made all the difference in my life. I wish all of you a wonderful Fathers’ Day and I hope your twenty-four hours is as fun as mine!

family

Yo soy La Lay

adventures in family, faith, and Down syndrome

On letting go

(untitled vent.)

Lesson #31: There is beauty in this change

Lesson #27: Great nurses rock our world.

Lesson #24: She’s just another leaf

When you can’t hold all the babies you want

Down syndrome doesn’t suck.

Team Tessa Rocks Chicago

5 years

Guest Blogger Post – A Dad’s Perspective

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