Dear Mia

“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, 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.

Change.

“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

Typical

“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.