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Peace, not perfection

by Maggie

I never tire of the holidays.

I have no max input of twinkly lights.

Buying presents does not exhaust me. I could wrap for days and days.

I love the endless onslaught of Christmas cookies.

I have no fear of the rush to move from house to house, visiting with family and friends, enjoying coziness and cheer and gingerbread house making and ALL OF THE HOLIDAY THINGS.

(I have probably grown tired of the Trolls Holiday Special but that is beside the point. Those creatures are annoying.)

I am sure that much of my love of this season stems from the fact that I have two love languages: gifts and quality time. The American Christmas Season was made for people like me. I mean seriously – all we do from Thanksgiving through New Years Day is what I love – buy things and love on each other through endless holiday gatherings.

Sometimes where I falter is in reminding myself that the American Christmas Season was not made for all of the people I love.

Eek.

For example, about a week ago, my parents took me and the rest of the ladies in the family to an afternoon performance of The Nutcracker. I imagined a magical afternoon with my girls, their faces lit up with unbridled excitement at the costumes and the music and the dancing. As the performance drew nearer though, I began to have some trepidation of how Tessa would respond to the theater environment. In general she has struggled in concerts, performances, and other events where there is clapping and lots of sensory input. In the name of including her, we forged ahead with the day, and I was hell-bent on making this a great experience.

Until it wasn’t.

Before the curtain even went up, it was apparent that she was going to sob her way through the performance (I suspect in fear of the moment that applause would break out). It didn’t matter if I covered her ears or found some other way to block out the noise, she was not going to have it and my magical day with the girls suddenly felt heavy and sad.

I’ll be totally honest – when I ran out of the auditorium and into the bathroom with her, I cried in anger for about 15 seconds because this beautiful experience was so hard for her. It felt really unfair.

And then, as I sat with her in the lobby and waited for John to take her home so that I could watch the show with Ellie, I thought through all of the hard things that people deal with in the holidays. I gave myself an internal stern talking-to and reminded myself to calm the **** down. Because seriously, this is a molehill compared to the hurt that people struggle through during what should be a sweet and festive time.

My struggle with perfection has come to head this season as I have seen my eldest start to navigate the very real irritation that I also feel when things do not go as planned. She is as I am. And to help her function in our world, I have to consciously choose peace in the imperfect, not in perfection.

It is not easy. I have wanted desperately to rearrange ornaments, or people’s choices in meal times, or my child’s psychological brain function…. it’s not realistic.

Peace is not perfection.

Peace is not perfection.

There is still so much to be learned. ❤

family Language and Feelings self Tessa Uncategorized

My Beach Body

by Maggie

My Beach Body has stretched to grow three humans. It has a hefty amount of stretch marks and a tummy that looks kind of like a deflated balloon. It’s smushy and cozy and not on my list of “immediate concerns.”

At not-quite six weeks post-partum, my Beach Body is ready for the bathing suit I just bought to accommodate a pooch. It is ready to splash in the pool with my girls and to enjoy a wine spritzer while lounging in an Adirondack chair and reading Rachael Ray magazine.

Next summer, my Beach Body will likely still need that same suit and that is OK.

You see, my Beach Body, which looks nothing like the Beach Body of my early 20s, is healthy and fulfilled. It enjoys a lean protein and vegetables for lunch and dinner, but also the chocolate that follows once the kids are in bed. My Beach Body now is not longing to fit the size 4 wedding dress stashed in my daughters’ dress up bin. It isn’t even reminiscing about all the size 6 pants that I donated when Tessa was born. It thinks a little about the 8s and 10s that are in the back of the closet, but is comfortable in maternity shorts and size 12 for now.

Twice a week, sometimes more, my Beach Body takes a walk around the neighborhood, all by itself, and truthfully, rocks out to those boy bands from the early 2000s that I still can’t quite get enough of. It doesn’t go quickly, or break into a jog, but it moves. It shows my girls that they can take a moment to breathe, to be in solitude, and to step away from the world’s chaos for 30 minutes.

My Beach Body wants my precious girls to know that they can go to a birthday party and enjoy a piece of cake. It walks those girls to the ice cream stand down the street and does not feel guilty about a chocolate-dipped cone with sprinkles. It doesn’t need wraps (thanks no thanks, random Facebook acquaintance that I haven’t spoken to in 10 years) or shakes. It doesn’t believe in cheat days, but in moderation. It feels balanced. Chubby and healthy and balanced.

Image may contain: 3 people, people smiling

Language and Feelings self Uncategorized

Lesson #13: Advocacy never sleeps

by Maggie

This is part of the 31 for 21 Blog Challenge!

ad·vo·ca·cy

noun \ˈad-və-kə-sē\

the act or process of supporting a cause or proposal : the act or process of advocating something

There are a lot of days that I wake up with a take-charge attitude toward advocacy. Most, even. When connected to a community who advocates for special needs, there’s always a cause to fight for. Some magazine posts an insensitive article about birth defects. A television program uses the R word inappropriately. Some crazy scientist tells me that my child is suffering. Yes, every day, without fail, there is a need for vocal campaigning. Every. Day.

Trust me, I’m all about fighting the good fight. I’ve never been one to shy away from (politely) sharing my feelings. If someone posts a link to a news story that isn’t supportive or encouraging, I do my research and then I’ll call someone out on it. I champion the causes of acceptance, love, understanding, empathy, and inclusion through words and actions. I am all for preaching to the choir, preaching at the devil, even preaching to a brick wall if no one else will listen.

Most days.

Some days (not many, but a few) I’m tired. I can’t fight every battle. I do think it’s incredibly frustrating that something happened, but today, I cannot fight. Because even if advocacy doesn’t sleep, sometimes I must. Without a break, it’s an effort that isn’t sustainable.

Thankfully, there is a huge network of moms out there ready to advocate for inclusion and acceptance when I can’t. Not just moms, actually. A community of supporters stand in the wings, picking up when I’m tired. I do the same for them. Together, united behind a worthy cause, our advocacy never sleeps.

Language and Feelings self

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In which we begin again

by Maggie

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

I just love this picture that my sister took…

Ellie and Tessa, hanging out as sisters do…

And finally, Tessa’s first toenail polish…

family self work

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Reacting Appropriately

by Maggie

And here is the difference that Down syndrome makes:

Belly sleeping must be something genetic. From me to Ellie and now Tessa… we love it. As Ellie has grown, she has embraced more of a “pass out sprawled as awkwardly as possible across the entire bed” approach to sleeping. However, I still remember finding her sweet little diapered butt sticking up sky-high in the crib when she was an infant. There are pictures, gobs of pictures, washed out in the terrible flash of an iPhone camera. It was just darling.

(On a side note: how did we function before digital cameras?)

Tessa, too, loves the comfort of belly-sleeping. But finding her with her knees tucked under her butt, rather than sprawled flat on the mattress, gives me a markedly different reaction.

It’s monumental.

It’s me rejoicing – she can! She can!! She can bring her knees up under her body. She did it!! The practice is working! Miss Kate and Miss Rachel (OT and PT) will be so proud! I’m so proud!!

Every milestone is a rockin’ celebration. I don’t even get pictures of this stuff because I’m too excited to consider a camera. Yesterday, Tessa found herself in the mirror during her bath. I don’t have a clue when Ellie first stumbled upon her reflection, but yesterday, I sat and stared in awe while our little peanut shyly smiled at herself.

Monumental.

This is the challenge now, when there is a child born with obstacles… reacting appropriately to the successes of others. Everything that other kids just kind of figure out takes her so much more. And so commiserating when the momma of a typical child impatiently wonders when her child will be able to XYZ… it’s hard for me, okay? It is. It just is.

And now, cuteness:

Language and Feelings self

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The State of Our Union: July, 2014

by Maggie

Midway through 2014…

What?

Seriously, when did that happen? Our lazy days of summer have been very, very good to us. With the Fourth of July holiday now over, I can already feel the itch to get back to school. Crazy as I know it is, I do miss the routine of our school year.

But not enough to rush back in already. 🙂

Here’s an update on how we’re all doing… skip to the end if you’re only interested in our most-interesting family members (meaning: the kids. I’m not offended if you don’t care much about John and I. 🙂 )

John and I

We’re coming up on our five-year wedding anniversary (this Friday!). As we have spent every one of our anniversaries in the car and this year will be no different, on kind of a whim, we went out to celebrate last week. Hiking in a forest preserve, beers at a local brewery, Buffalo Wild Wings for dinner (because it’s within walking distance from our house), and then walking home in the pouring rain… it wasn’t exactly a romantic celebration of our love, but I think it fit our couple personality well enough. Maybe not the hiking… no part of me is a hiker. But we did it.

Why buy a card when you can just show one to your husband in CVS for free??? 🙂

John is loving every minute that he gets to play with his girls. Grad school is in a lull right now before his final push to the end and Lord knows that no one is ready for that to be over more than we are. He’s also training for the Chicago Rock n’ Roll Half Marathon (donate here), which means a lot of late-night and early-morning runs. I’m so proud of him! And, our team is in first place for the amount of money raised. I can’t wait for the race!! Team Tessa will be out in full force!

I’m settling into a new position at work this summer, which has been a (good) whirlwind. I have also made some good connections with mommas in the Down syndrome community and I, like John, have really enjoyed time with the kids. My travel bug bites are sufficiently calmed for a little bit from all of our mini-excursions, though my recently-renewed passport is just dying to be used…. someday….

Ellie

Can I tell you again how much I despise potty training?

The child is a nutcase and I adore her. She’s smart as a whip and fiercely in love with all things Frozen. We have seriously watched the movie at least 5 times a week for the last month. Now if we could just get her to take a break from her imaginary universes and start listening to her bladder, we could move all move forward. Ellie loves her sister to pieces and we haven’t had a single issue with jealousy or regressing to baby behaviors. What a blessing! 🙂

There is no filter on this picture. Those eyes are going to break hearts someday….

Tessa

We had Tessa’s six-month IFSP review yesterday (her IFSP is the document that outlines her goals for development). She is almost seven months old! Her occupational therapy evaluation was yesterday as well. On the positive side, she rolls like a champion and is actually “advanced” for her age at that skill!! However, she is struggling to use her hands to do more than swat at toys or put things in her mouth. When she was evaluated today, we learned that developmentally, her fine motor skills with her hands are around the two-month range. So, going forward, we’re going to add in occupational therapy once a week. We have to work on her core strength. It’s difficult for her to do much of anything until that tummy strength improves. It will help her move, play, eat, breathe, interact… it’s a huge focus for us right now! As our developmental therapist (DT) explained to us, she’s going to keep developing cognitively and if her body won’t do what her mind really wants to, we have to worry more about her behaviors (which, by the way, happens in classrooms all across the world all. the. time.). In true Tessa form, as soon as she heard her DT say this, she started to improve. I swear to you that as soon as this child hears that she isn’t doing what she should be and we’re going to add more therapy, she hurries up and “gets” the new skill…

This month, we also started solids with Tessa. She seems to be indifferent to it really. Can I also mention how much easier it is to do things like start solids when you just have one child? I don’t know why, but we have been really inconsistent in feeding Tessa at the table. Weird. Anyway… right now, she doesn’t eat a whole lot by spoon and she’s slow as molasses, but she doesn’t spit it out! While we can’t always tell if she is interested in more or not, she will let us know when she is done. With great joy, she spits it all in our faces by buzzing her lips. The joys of parenting… I have started using a few signs with her (“more,” “all done,” and “eat”) and I’m sure that once John reads this update, he will, too. 😉

Tessa’s emerging personality is sweet and easygoing but has a flair for the dramatic, she loves people and being held, adores her sister and daddy (and most other people)… She sleeps well, is now eating well and provides great balance for us and her goofy sister. She is such a great addition to our family!

As our summer dwindles (but not too quickly!), I can’t help but feel so blessed for all that we have right now. Our family, friends, and coworkers have been overwhelmingly positive, supportive, loving, helpful… I could go on and on. For now, I just want to say thanks. If you are reading this, you have been a part of this… of us and we can’t thank you enough.

family self Sisters

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Special Needs Mom Law #2

by Maggie

So I guess I fit into the category of a Special Needs Mom now, though I’m not exactly sure what that means. So much of Tessa’s care seems similar to Ellie’s. Slower, perhaps, but the same.

Nevermind that whole week we just spent in the PICU, of course.

Still, after I told you all about my fear of Mom Jeans, I’m trying to put some goals in writing to maintain… maintain what? I don’t know. But as my blog friend Jill (and fellow Ds momma) put it, we are trying to avoid being those unfashionably fiery and crazy Special Needs Moms in our nightmares. I’m pretty sure that fiery and crazy is gonna happen sometimes, but we plan to do it without looking and feeling like a wreck. 🙂

My Special Needs Mom Law #1 is “Put your own oxygen mask on first.” Thanks to Beth, our NICU social worker for that one. No mom jeans allowed. No laundry on a Friday Night unless we’re going on vacation the next day. My Law #2 is “Celebrate the typical children, too.”

My Ellie Bean is bright and fun and fabulous… and she does some really awesome things! I fear minimizing her accomplishments because I know that Tessa’s won’t come as easily. But I need her to feel important, special, and loved just as much as her sister. And so I present to you Ellie’s milestone of the week:

That’s her name!! She can write her name!! We had been playing a lot with the Writing Wizard iPhone app, but I had not seen her skills transferred to paper. My mom showed me that she could write the letters with a marker last week, but I really needed to see it for myself. So we pulled out her little whiteboard this morning and she showed me. I’m so proud. 🙂

self

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Priorities

by Maggie

Do you know what I’m really afraid of?

Mom jeans.

High waisted to hold in the leftover baby pooch, slim around the ankles with white tennis shoes. Or, Heaven forbid, the “capri” variety with socks and a pair of New Balance….

No. Not a good look. For anyone.

I know, I know, I’ve probably offended someone out there who loves their mom jeans. Or maybe someone doesn’t care about how they look and thinks I’m silly for even going there.

It’s not about the jeans, though. Not exactly. It’s more about me. Not my body (thank you, Weight Watchers app for checking in again today after my week from Hell. No, I’m still not going to weigh myself), not my fashion, just me.

The back story is this: Long before we even thought about Tessa, I began planning a student trip to Costa Rica with some colleagues. When we set our June, 2014 travel date, John and I were planning to have our second child about a year before the trip.

We all know how much God loves our plans.

Instead of our April 2013 baby, we got Tessa in late December. And cautiously, John agreed that she would be old enough in June for him to take care of both girls on his own for nine full days.

Flash forward to now, about a month before departure, and I had to back out of the trip. Aside from the financial aspect, there was a strong feeling that until Tessa is just a little healthier, stronger, more self sufficient, I need to be available… at least in the same country.

I am totally at peace with this decision. Of course, who doesn’t want to go gallivanting around a beautiful, exotic cloud forest, even if it is with a bunch of 17-year-olds?? Sad, yes, but I know this is best for us and what we can afford financially and emotionally. But it has me thinking about the “mom jeans.”

Because what if this snowballs? “No trip” turns into putting off a manicure or not getting Happy Hour wine with a friend so that I can be home with the kids… Then I stop putting on make-up every day and hair styling becomes a distant memory and then all the sudden I’m sitting on the couch in my mom jeans and old Kelly Clarkson t-shirt watching Shark Tank on a Friday night and I’m planning my weekend of chores instead of going on a date with my husband or taking a bubble bath.

It’s not the mom jeans. It’s the idea of life in mom jeans. It’s the idea of not taking a hour in the evening to read a book or catch up on Sister Wives… Or not finding a way to prioritize my own exercise routine…. Or not having enough energy to make sure that I haven’t created some awful outfit combination of stripes and polka dots while getting ready for work. That is my fear. Of not “putting on my oxygen mask first” like our NICU social worker used to always tell us.

John says the transition from zero kids to one was way more difficult than one to two. I beg to differ.

self

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Yo soy La Lay

adventures in family, faith, and Down syndrome

Peace, not perfection

My Beach Body

Lesson #13: Advocacy never sleeps

ad·vo·ca·cy

In which we begin again

Reacting Appropriately

The State of Our Union: July, 2014

Special Needs Mom Law #2

Priorities

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