Little Writer Monkey

“The Christian does not think God will love us because we are good, but that God will make us good because He loves us.” ― C.S. Lewis

These stories crop up here and there, and they usually go something like this: I had an ultrasound and the doctors said something terrible was going to happen to my baby, but I trusted in God and when my baby was born everything was okay. The doctors were wrong. I am so blessed. And then at the end in a sort of obligatory way – and even if my baby had been born with a disability, I’d still be blessed.

Lately when I read these stories, I feel like the big elephant in the room. I’m the person whose baby didn’t turn out okay.

The doctors were right. The ultrasound had been accurate. My baby was born with Down syndrome and a hole in her heart, and then I was left to wonder, “Why us?”

But the reality is that life isn’t a punishment/reward system. Do the right thing and you get a prize and do the wrong one and you get smote by the Lord. It’s far more complicated than that.

Over time, I’ve realized that God doesn’t just bless us with healthy babies. He also blesses us with babies who have hardships and disabilities, and the recognition of that shouldn’t just be one line at the end.

Don’t get me wrong. These stories are wonderful and miraculous and have amazing endings, but there aren’t very many stories about the other side of that coin – the story without the happy ending. Is it just easier to tell these “happier” stories? I’m certainly rejoicing that the babies in these stories are healthy and living healthy full lives, but do we usually ignore the harder stories because we don’t have to ask ourselves the difficult questions about pain? Is it because we can rest in the comforting thought, “Good things happen to good people?”

But that’s not the way it works. Read Job to understand that this is just not always the way it works. Sometimes things go horribly wrong.

And then we have to figure it out. We have to accept what we can’t change. We have to go through the stages of grief and we have to come out the other side. We have to trust in the Lord even when our trust is met with pain.

Because many, many times the doctors are right and we have to deal with that truth too.

Sometimes bad things happen to good people, and we get pushed outside our comfortable box of truth into an entirely new one – a box in which things are just not so simple. Sometimes blessings take on a different form all together. Sometimes blessings don’t come with happy endings. Sometimes God lets us get bashed over the head and we have to deal with that too.

The truth is that sometimes our blessings are really going to hurt.

“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” ― C.S. Lewis

“Life is either a daring adventure or nothing at all.” ― Helen Keller

Mia has a single transverse palmar crease on one hand. It’s one of the tell-tale signs of Down syndrome. On the other hand she doesn’t. It’s just a typical palm. Her opposite hands have become symbolic for me – how it could have gone either way. One isolated soft marker. A four percent chance. Odds are in your favor. It’s like when you watch a spinning quarter. Head or tails. Heads or tails. Heads or tails.

I think back to last year. What would my life have been like if that typical palm had been her story? What if I was one of the 96%?

But I wasn’t. There are still days when I’m sad. Sometimes I look at friends’ completely healthy babies or typically developing children and think, “I wish that were me.” It’s human.

Because it could have gone either way.

Like in one of those choose your own adventure novels, you go down one path and find the hidden treasure or you go down another path and get eaten by an alligator. Only I was forced down a path by circumstance. I didn’t choose the adventure.

So did I find the treasure or get eaten by the alligator?

I started 2013 reluctant to reach out to anyone. I didn’t know what all of this meant. I didn’t want to be part of a group. I didn’t want to be an advocate. I just wanted it all to go away.

I could have gone either way.

But over the course of the year, I’ve made new, amazing friends, been overwhelmed by the support of the people in my life, become an advocate for my daughter, tried to educate others, grown in my faith, and had my eyes opened to an entire community ready to welcome us.

And I’ve fallen madly in love with a beautiful girl who is becoming a sassy toddler.

Last year really could have gone either way.

The infant year is over. I don’t know what to expect from 2014. I’ve given up guessing.

I don’t think it’s my adventure anymore anyway. It’s hers. I’m just along for the ride.

It’s been too long since I’ve blogged, but life has been so boring. Just kidding, it’s never boring.

You may have read on Facebook that Mia had an echocardiogram last week. The results were fantastic. The hole in Mia’s heart (VSD) is smaller than when she was a newborn and isn’t causing any damage to her heart, so the doctor put her back on a “monitoring” schedule. That means she’ll have an echo next year and we’ll look again.

Nate said something that summed up how we’ve both been feeling about the heart questions, “I had no idea how stressed I was about this until it was over.” It occurred to me after our doctor said she’s fine that I felt a year of tears well up behind my eyes. I held it together, just barely.

We also looked at a private school in our little east side neighborhood for Fynn. The school doesn’t have many spaces left, so we’re hoping he’ll make it. I have a bit of anxiety about sending Fynn to school. I made a decision to keep him home instead of preschool because I was home and I wanted him to be here with me for as long as possible – just to enjoy our time before we have strict schedules and school and the “just us” time ends. It’s been amazing, but I know he’s ready to venture out. We started Sunday school with him this year and he’s so excited to be there with friends and teachers. He enjoys it so much. My little extrovert wants to “play with all the kids.”

This little school might be a good place for Mia to start out as well. I’m not ready to broach that subject yet. I’m trying to think one step at a time.

It’s almost the New Year. I’m ready to put 2013 behind me. It’s hard to explain what I feel about last year. It was good, sad, intense, joyous, difficult, surprising, tumultuous, and exciting all at the same time. I have happy and not so happy memories. What I do have are two beautiful children, a loving husband, an amazing family, fun and supportive friends, and a beautiful, messy, complicated, and happy life.

“For last year’s words belong to last year’s language
And next year’s words await another voice.”
― T.S. Eliot, Four Quartets

“The flower that blooms in adversity is the most rare and beautiful of all.” Disney’s “Mulan”

Dear Mia,

It is your birthday in a week, and I wanted to write this today. It’s appropriate because today was your due date, October 31. You made me wait five more days to meet you, but you always do things on your own time.

I want to tell you about a flower. The Chinese have a very special flower that they hold in the highest regard. It is the plum blossom. The tree that produces this flower produces a lovely fruit that the Chinese use in dishes as well as medicine. The fruit makes this tree special, but so does the flower. The plum blossom signifies one of the first signs of spring for the Chinese people because it is first to bloom. In fact, it will bloom so early that the snow is still covering its branches. Can you imagine a flower that blooms during the winter? When the weather is the harshest and the sun barely shines, a flower blooms.

We knew before you were born that you were going to be different. We were sad, but not sad for us. We worried about you. We worried about what you would face as you grew. Would you have challenges? Would people be cruel? What would happen to you? But through all of these difficult months of worry, I had faith. I had faith in you and in God.

When you were born, I was terrified. I was worried that you were sick, that you wouldn’t make it, and that I wouldn’t know how to take care of you. And then you had to go to the NICU and I had to say goodbye. I made a vow after that time that I would never let someone else decide what you needed ever again. You are mine and I am yours and we will figure this out together. Our doctors will help us, not dictate to us.

Over the course of this year, I feel like I’ve witnessed a true miracle of life. Like the plum blossom you were born in harsh circumstances, but you bloomed. You were born with extra genetic material, and the doctors could not be specific about what would happen. They gave me statistics and made no promises. I was left with a cold, “Good luck.”

But then you grew and you developed and you became the baby I didn’t know I wanted. You grow more and more into the little child that I dreamed about before you were born. You are full of love and life. Every single day you learn something new. You are the most determined little baby I have ever seen. I watch you work until you’ve mastered a skill. I would love to take credit for it, but you do it so naturally on your own. You want to learn. You’re a bit of a trouble-maker. You want what you want when you want it. You can level me with a smile or a giggle. And you’re beautiful. One of the silly things I thought about before you were born was, “What if she’s not pretty?” You’re not just pretty. You’re gorgeous, stunning, and effervescent. You’re all of these things but what makes you even more beautiful is that you bloomed.

There are days when I still worry about the future. I worry about what will be, but I see in you so much determination that I have great hope despite these worries. I thought I would spend this year inspiring you. I thought I would have to coax and prod and teach. What I didn’t realize is that you would inspire me. You had your own internal motivation to grow and develop. You have strength of will that is rare and powerful.

I want you to know this, Mia Katarina. You are powerful. Don’t ever let anyone take that power away from you. You are powerful because God is behind you and walking with you every single day. With Him anything is possible. Don’t ever let someone build a wall in front of you. Those kinds of walls are meant to be knocked down. You can do this because you are powerful.

I wish you a very happy first birthday my little plum blossom. May you continue to bloom, inspire, and love.

With great love,

Your mommy

“Remember, remember the 5th of November…” – English Folk Verse (c.1870)

Mia’s birthday is coming up on November 5. I don’t think I’ll ever forget her birthday. Not because of her diagnosis or the traumatic birth day. I actually thought about writing her birth story a year later, but decided it’s pretty pointless. I feel like she was really born when she came home, and we learned who she was outside the doctors’ descriptions of her diagnosis.

The real reason I will never forget her birthday is because it’s Guy Fawkes Day. I’m sure you’ve heard of or watched the movie “V for Vendetta,” which was derived from his story. He was arrested for attempting to blow up Parliament. The Brits still celebrate the day of his capture by burning effigies. The poem the British children say is: “Remember, remember, the 5th of November/ The Gunpowder Treason and plot/ I know of no reason why Gunpowder Treason/ Should ever be forgot.” So, every single time someone asks Mia’s date of birth, I sing it in my head. “Remember, remember the 5th of November.”

I didn’t think it would be emotional as her birthday drew near, but it is. Although, I think it’s for a number of reasons, but the biggest is that I think about how much we’ve all changed over the past year. I don’t feel like the same person. This may sound very dramatic, but I find it highly appropriate that her birthday is on Guy Fawkes Day because that was the day that my life was completely blown up.

I used to care about a lot of things that don’t really matter all that much. I’m finding this year really strange because, since the life that I knew (or thought I knew) is gone, I feel like I have to start again. It’s like I’ve been reborn this other person and now I have to figure out who she is. It’s becoming very clear, however, that I’m going to have to build this person myself.

And Mia? I think back to those first days in the hospital and all the dread I felt. What will she be even doing by one? Would she even be rolling over? Would she know who we are? What was her level of disability? What are we dealing with here?

Nothing the doctors said prepared me for this little girl. Over the course of the last year, I know I’ve felt like I’m in some sort of parallel universe – this parallel universe of “typical.” For the most part, she’s doing everything a typical baby should do. I have no idea what is going to happen this next year or the next 20. I’ve been trying not to ruminate on it, even though it’s really hard not to. She’ll develop into the person she’s going to be in her own time and on her own schedule. My job is just to teach and get out of her way.

Even though things have been pretty typical around here, there are still things that remind me of disability. Getting her measured for orthotics on Friday was one of those moments. The person measuring her said that she might need bigger orthotics – AFOs – because of her hyper mobile ankles (common with Down syndrome). He asked, “Is she doing any standing yet, with those ankles?” I said, “Yes, all the time; she likes to stand.” He replied, “I guess it doesn’t bother her.” Later I thought more about this. Mia has no idea that she’s different and it doesn’t bother her. In fact, she’s doing things that are hard despite her disability.

The countdown to the big birthday has begun. I think I’m ready for it. I know I’m ready for the cake smashing and the presents. All I really know is that we got through this first year with all of its ups and downs and none of us can imagine our life without Mia Katarina.

“How wonderful it is that nobody need wait a single moment before starting to improve the world.” ― Anne Frank

A couple of nights back, I posted a video on my Facebook account of Mia dancing to “Shake Your Sillies Out.” I love this song for kids. It is fun and it’s physical and they love it. We hadn’t really been singing it together for very long until she started to anticipate the movements, clap on cue, and then give me signals to request it. It’s sweet and I love it and she loves it. That song just reminds me of why I really love having kids.

Something has been bothering me for a while. It’s something that crops up when I teach Mia something new or kiss Fynn goodnight before bedtime. It might not be what you expect.

It’s only been fairly recently in the United States that children with Down syndrome aren’t automatically shuttered off to institutions. It’s only fairly recently that we’ve understood that people with Down syndrome can learn and succeed, even if it is on their own timetable. We have come quite a ways as a country when it comes to helping and supporting people with disabilities, but we still have a ways to go.

All of this is difficult and makes me push harder and want more for her.

But something keeps bothering me that I can’t shake. I can’t just not think about it. I think about it more every day.

There are parts of our world where children with Down syndrome are sent to institutions and are deemed “unteachable” – right now in the year 2013. When these children “age out” of orphanages, they are sent to adult mental institutions. They age out at four. They are sent to adult mental institutions at four years old. I can’t even type this without getting emotional.

How can this happen? How can it go on? How can this continue? I love my child, my children, so much that I can’t even imagine this kind of injustice. I want to scream and shout and do something, but I have no idea how to help. How do we stop this from happening? How do we save these kids from this fate?

I don’t know, but I do know this – the more people know that this is happening, the better. We can make it part of the conversation. Maybe we can do something about it.

“There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.” ― Elie Wiesel

One organization trying to help: http://reecesrainbow.org

“A day without sunshine is like, you know, night.” ― Steve Martin

Okay, I’ll be the first to admit it. My blog has become a little maudlin. October is Down Syndrome Awareness Month. Last October, I was blissfully pregnant. Scratch that. I was really pregnant and having constant false labor. It was awesome. *note sarcasm

So this October, 11 months after the little miss was born, I think I’ll start the month with a “day-in-the-life” blog. Really I want you to get the full picture of how different my life is from the life of another stay-at-home mom with a “chromosomally typical” (my favorite phrase) child.

6:30 AM – Children wake up. Mia babbles and cries for us from her crib. Fynn rolls over and kicks me because at some point in the night Fynn found his way to the “big bed.” We all wander around trying to wake up. Nate is usually on his way to work around this time and I’m fumbling in the kitchen looking for the coffee grinder and cursing myself for not washing the coffee pot the night before.

6:30 AM – 9:30 AM – Children eat breakfast, Fynn watches a little PBS, and I might start on a project I’ve been working on for someone or myself. And literally a hundred times I chase Mia around the apartment, stopping her from pulling Tupperware off the shelf in the kitchen, pulling books off the bookshelf, and trying to play in the bathroom (I really need baby gates). Oh, and rescuing Fynn because she likes to pull his hair. Mia and I play ground-breaking baby games like “peek-a-boo,” reading books, standing at the ottoman, and eating puzzle pieces. Oh, and we have multiple conversations and I get waved at quite a bit, usually before she heads off somewhere to get into some more trouble. Meanwhile, Fynn has likely pulled every single toy out of its resting place and makes sure the house is good and messy. And we’ve probably played cars about a dozen times.

9:30 AM – If it’s a Tuesday, we head to Fynn’s occupational therapy appointment. It’s an hour of Fynn playing on swings, skate boards (on his stomach), trampolines, and he works on writing, puzzles, and other fine motor skills. Mia and I watch. Mia is very fascinated by OT.

If it’s another day, Mia takes a nap and I frantically clean up the choking-hazard toys that Fynn has left strewn about the floor.

11:30 – 12:30 – Lunch usually takes about an hour and I hope I get to eat, otherwise I try to survive on coffee and fruit snacks. (I’m the picture of healthy eating.)

1:00 PM – 1:45 PM – If it’s a Tuesday, Mia has physical therapy at the apartment. So the therapist works on standing and crawling and sitting. You know, baby things.

If it’s a Wednesday, we are headed to Fynn’s speech therapy appointment. He works on diction and following directions. Mia mostly just talks to herself in the mirror in the therapist’s office and crawls around the crash mat on the floor.

If it’s any other day, we’re heading to one of these places – Betty Brinn Children’s Museum, Discovery World, Milwaukee Public Museum, Milwaukee County Zoo, Milwaukee Public Library, Audubon Nature Center, the park, or our apartment courtyard. (And typically Mia is strapped to my chest because she HATES the stroller. I’m getting a strong back and shoulders. How many calories do you think that burns?)

2:30 PM – 3:00 PM. If it’s a Wednesday, I’m speeding (don’t tell the Sheriff) down 94 to make it to Mia’s occupational therapy appointment at our apartment, where she works on fine motor skills. Then she naps.

If it’s not, Mia naps and Fynn has some quiet time – reading, movie, etc. I try to clean up the house so it doesn’t look like the kids won. Fynn and I will play games or make crafts or read books.

4:30 PM – Everyone is back to playing. I’m chasing Mia around the house again (Am I up to 1,000 rescues yet? We really, really need baby gates.) Mia and I do some more playing and talking.

5:30 PM – Nate gets home! I’m done for the day. LOL. No, we try to cook dinner and I trap Mia in the pack ‘n play (Her favorite place to scream. I imagine the angry things she’s saying to me about baby prisons.)

6:30 PM – Mia makes a gigantic mess at dinner, and we beg Fynn to eat SOMETHING other than PB&J while he tells us that all the food tastes horrible. The latest this week? “The chicken is too dirty (breaded) and the rice is too ricey (self explanatory).”

7:00 PM – If the entire day has gone as it should, Mia gets a bath and goes to bed.

7:30 PM – Fynn gets a bath, and then he goes to bed.

If all has gone pear shaped like last night:
Fynn wanders around the apartment pulling out even more toys and saying sassy things. Mia insists that she’s WIDE awake and screams if I try to “cuddle her to sleep.” Fynn finally makes it to bed at 9 PM. Mia falls asleep at 10 PM. Nate and I watch an episode of “Mad Men” and then crash.

In case you were wondering, we have Fynn’s occupational therapy every week and Mia has physical therapy every week. Fynn has speech every other week, and Mia has occupational therapy every other week.

So I want you to do the math. On the weeks that we have “a lot of therapy” it’s four hours. That’s it. Four hours. There are two hours when I have to think about Down syndrome, and two hours when I have to think about sensory processing disorder. That is all. When we add on speech, it will be five hours.

In reality our life is not very different from a typical home with a 4-year-old boy and an 11-month-old girl, except we have 4 hours in the week when someone else plays with our kids.

I know this is going to sound crazy, but in the day-to-day reality of life, Down syndrome doesn’t really affect us. It doesn’t, but don’t think I’m in some sort of massive denial. It will come. IEPs, behavior issues, delays, etc. will come, but right now she’s just a baby. A very typical baby.

She’s a healthy little girl with Down syndrome. I’m not joking when I say that she’s been sick 1 time in 11 months. I was expecting her to be sick all the time. One cold last week.

The only way Down syndrome affects me right now is in my head. Worry, sadness, frustration, and anger; it’s all mental. Mia is doing nothing to affect our life in a negative way. My head is doing all of that work for her. She is just doing her thing every day, and her “thing” is being an infant. It’s me that has the problem.

I know that there will be many, many frustrations, school decisions, big adult decisions, and on and on down the road. I do understand this and worry about this more than you can imagine. I just don’t want anyone to think I’m some sort of superwoman for what I have to deal with day in and day out right this minute. No one should think, “How in the world does she get through the day?” I mean, if you just think that automatically when you imagine a stay-at-home mom with a sassy 4-year-old and a very mobile infant, then that’s okay.

I’m just your average mom doing the things that moms do every day. I basically educate and make sure the kids don’t accidentally kill themselves. It’s a big job.

“It’s a helluva start, being able to recognize what makes you happy. ”
― Lucille Ball

Since it’s Wednesday and the majority of our house is sick, I thought I’d do a happiness list today.

Here are a few things that make me happy:

Open mouthed baby kisses.
When Fynn says: “This is my style,” “Here’s the plan,” and “Let’s rock and roll”.
The lake view outside my east window.
When Mia waves hello.
Hardwood floors.
The smell of freshly ground coffee.
Waking up to Fynn burrowed into my side after he has climbed into our bed.
Mia’s sweet baby babbling.
When Nate calls in the middle of the day, just because.
The smell of the air in September.
How the house feels after I’ve rearranged the furniture.
Tea tree shampoo and conditioner.
Family dinners.
Watching Fynn play in the sand.
When Mia falls asleep on my chest.
When Fynn has to stop to smell the roses growing by the side of our building.
The way Fynn wraps himself around Nate when he gets home from work.
When Mia tries to follow us around the house.
When I catch Fynn giving Mia a hug.
The smell of Nate’s cologne in the morning before he leaves for work.
Reading the first chapter of a new book.
Tomatoes.
Walking on the lakefront.
Sitting in the courtyard watching Fynn play.
The first step onto the trails at the nature center.
Going to bed knowing my family is happy and healthy.

That’s it for now! I hope you all have a very happy Wednesday.

“I am conscious of a soul-sense that lifts me above the narrow, cramping circumstances of my life. My physical limitations are forgotten- my world lies upward, the length and the breadth and the sweep of the heavens are mine!”
― Helen Keller

I’m going to say it. I hate the word disability. I hate everything about it. It is like lead in my mouth. Mia has a disability. She is disabled. I say it and choke on it. Yet I say it. I write it. I think it. And each time I hate it more.

I don’t hate it because I don’t want my child to have a disability, although that is true too. I hate it because it only describes my daughter by what she can’t do as opposed to what she can accomplish. It limits her. It diminishes her. And I hate that word for doing that.

It’s just a word. Semantics. I know it shouldn’t matter, but words matter to me.

I know I’ll get over it. I know I’ll grow up and accept the word for what it is, but today I wish it didn’t exist.

I know it will be always be a part of her story. I just hope it doesn’t become her only story.

“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” ― Shel Silverstein

The question keeps coming up – The question of functioning. “Is Mia high functioning?” If you’ve ever asked me this question or suggested it, please do not feel guilty. I’m not offended in the slightest. It’s a question I would have asked. It’s coming from of a place of love and wanting to understand. I get it.

So is Mia high functioning? I think I’ve found plenty of creative ways to dodge this question. Is Mia doing well? Yes, she is. She is meeting most of her milestones on time or in the range of “normal.” Are there areas in which she’s delayed? I’m sure. I couldn’t tell you what they are because I’m not as concerned about delays anymore. One step at a time. One milestone at a time. One victory at a time.

As parents, we all want to know the future. As I left the hospital with Fynn, I thought to myself, “He’s going to be smart and capable and perfect.” Later on, when his speech was more and more delayed, I realized that he’s smart and capable, but not perfect. I think we all understand that perfect just doesn’t exist. Not on Earth anyways.

But as I left the hospital, there was no assumption that Fynn wouldn’t be capable. There was no assumption that he couldn’t be whatever he wanted to be. His possibilities were endless.

When I left the hospital with Mia, I was thrust into the world of best case scenario. What is the best case scenario of having a child with Down syndrome? Independent living? Group homes? High functioning?

I believe that this question comes up because high functioning, to many people, means independence. A life filled with joy and not misery. A life really close to “normal.”

The reality is that I have no idea if Mia is going to be capable. I have no idea how that extra genetic material will limit her growth and development. Nate referred to it once as “a blind investment.” It’s a blind investment in her future. Just like with Fynn, we are going to do everything humanly possible to give Mia the best possible life she can have. And then we’re going to pray and trust because only God can move mountains for this little girl.

But here’s what I’m going to do. I’m going to do her the same favor I did for Fynn. I’m not going to put up a brick wall and tell her that everything on the other side is impossible. We’re going to be the house of possible. And if those possible things turn out to be impossible for her, then we’ll accept and love and move on.

As I look to the future, I would rather her life not be measured by how “useful” or “independent” or “successful” she is anyways. I would rather her life be measured by how much love, kindness, and charity she shows others. I want her to love because God first loved her.

And in the area of love, Mia is very high functioning.