Talking.

“A wonderful fact to reflect upon, that every human creature is constituted to be that profound secret and mystery to every other.” ― Charles Dickens

Talking. At Mia’s last IFSP meeting, the social worker asked if Mia was talking yet. I sort of sat there for a moment in silence. Yes, she does have a few words – dada, book, bubbles, all done, yes, no, hi, and she does sign milk, more, shoes, and help, but is she “talking?”

Some of you probably know that Fynn was a late talker. Really late. Like so late that he had to have speech therapy and then occupational therapy once we realized that his late talking might have more to do with a different problem than his not understanding how to talk.

It was hard. I think that many people didn’t really realize how hard it was when Fynn wasn’t talking. It’s heartbreaking to watch a child desperate to communicate with you melt down into temper tantrums because he isn’t being understood. You wait for that magical moment when you know what they are thinking and it never comes. I imagined friends and strangers attributing his temper tantrums to my own bad parenting. Sometimes people would suggest talking to him or giving him choices, and I sort of laughed sardonically on the inside. Talk to him. That’s all I wanted to do.

But instead I felt like I was talking at him and getting nothing in return. I often described it as living inside of a Beckett play. For my non-Lit friends, he’s an absurdest writer, and in his work one character might say something to another and the other character might respond with a complete non-sequitur. That was my life. We weren’t communicating with each other.

Ultimately, we settled into a sensory processing disorder diagnosis, got him the help he needed and the rest is history. I believe I even uttered, “He never stops talking,” to Nate at least once this week.

“Is she talking yet?” Having been down this path once before, I said shakily, “She’s not really talking, but she’s communicating. I appreciate the difference now.” Mia may not be speaking English, but Mia is communicating in so many ways.

Mia communicates love with a kiss and a hug. She shows her love for her brother by patting his hair and watching his bed in the morning, so she can wave to him when he wakes up. Mia asks me to read her a book by handing it to me and then raising her arms so I scoop her into my lap. Mia shows me how she wants me to play with her by demonstrating first. Mia communicates her hunger by pushing the chair back from the table. She shows me which song she wants to sing by doing the arm movements. She even tells her therapists she’s done with therapy by escorting them to the door and waving bye bye (although she does it after only 15 minutes). Mia plays pretend with her toys. Her dolls “talk” to each other through her sweet babbling.

Mia doesn’t talk, but Mia is a master communicator. Her temper tantrums are fewer because I decided to understand her instead of making her understand me. Although, lately I’ve been hoping to frustrate her just a bit by pretending I don’t understand, hoping to get her to speak just a few words. She’s on to me now so she just tries a different tactic, which usually includes a big hug. She knows how to make me do exactly what she wants.

So does Mia talk? No, not yet, but I know she will. For now we can speak her language.

In the meantime, the little thoughts inside her head are a mystery to me. I suppose she can keep her secrets for now. I know she’ll tell me someday.

The bus.

“A bend in the road is not the end of the road…Unless you fail to make the turn.”
― Helen Keller

I cannot even tell you how many times I’ve heard this platitude. I’ve said it. I think we’ve all said it or thought it. “I don’t care if it’s a boy or a girl, as long as it’s healthy.” After Mia was born, the platitude took on an entirely different meaning for me.

The other day, I heard these words spoken again. Not by anyone I know, but by a stranger. Out of nowhere I felt it – the disability bus. It happens from time to time. Ninety-nine percent of the time, everything is fine, then out of nowhere, that damn bus runs me over. It sucks all the hope away, and then I just feel the weight of it – disability.

I think those particular words hurt so much because it sets health above all else as the pinnacle of happiness, and that’s a pinnacle that my daughter will never achieve. Mia is healthy, but health is relative. She’s healthy with a hole in her heart, hypothyroidism (that will only get worse as she ages), low muscle tone, pronated ankles, poor eyesight, and a third 21st chromosome that will constantly affect her in every way. I realize all of these things aren’t horrible and she’s doing great, but she’s never going to achieve perfect health.

Of course health is important. I’m always working to achieve better health. It’s the constant mantra in our culture from buying organic food to the ideal exercise to the constant barrage of “what will kill you” in the media. We can’t escape it.

But after Mia was born, “just as long as it’s healthy” felt like such a weird sentiment to me. What does that even mean? Just as long as it’s healthy, what? You’ll be happy? You won’t worry? Your baby will be fine? A giant crevice won’t open in the earth and swallow you whole? What are you going to do if the baby is unhealthy? Are you going to give it back?

I realize the sentiment is really that we are hoping and praying for a healthy child, and there is nothing wrong with that, of course. No one wants their baby to suffer in any way. Everyone wants the perfect birth experience with no NICU stays and the perfectly healthy baby. And there is not a thing wrong with that. I even hoped and prayed for Mia’s health even if she had an extra chromosome.

And usually those words don’t bother me because I understand the sentiment. I hear it and move on. But it’s just that damn bus. The one that reminds me that she has to work harder than everyone else. It’s the reminder that she will be constantly judged by her diagnosis, and that our society has already determined what she is capable of. It just sucks. I hate that bus.

But thankfully that bus doesn’t stick around long. The weight is less and less lately. It shows up, knocks me down for hours, not days, because I realize that while disability is a part of our life, it doesn’t define our life. I get to decide how long it affects me.

I can either let the bus run me over or step out of the damn way.

And who has time for a pity party when you have these two awesome people to look after?

Mia1

Fynn 10

But what if…

“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” ― Helen Keller

Happy St. Patrick’s Day. Also Happy Down Syndrome Awareness Week! This year I’m feeling a little tapped out on how to really educate about Down syndrome. Every day I come across some new ignorant comment or thinly veiled type of racism against people with Down syndrome masked in “their best interest” or “humor.” Unfortunately, three years ago, that was me. I looked at people with Down syndrome with pity in my eyes and sadness for the burden that it must be for their family. Three years ago, at this time, I was blissfully unaware that I would be the future mom of one of those individuals that I pitied so much. I was blissfully unaware of my own ignorance. And then when I found out that I would be the mom of a child with Down syndrome, the fear came. Also the joy came, but that came much later.

Over the last year, I’ve been thinking of those fears. It’s so strange what popped into my mind when I thought about this diagnosis. When the health problems seemed to be less of an issue, the fears started being about every day life. Instead of explaining what Down syndrome means to me this year, I thought I would just show you all of my fears up close.

What if she has no personality?
Mia Selfies

What if she is sad all of the time?
Mia Laughing

What if she and Fynn never play together?
Mia and Fynn instruments

What if she just never experiences the joy of childhood?
Mia Pool

Mia Leaves

What if she never walks?
Mia Walking Outside

What if she isn’t curious?
Mia Undoing the Baby Gate

What if she isn’t interested in playing with toys?
Mia Music

Mia Little People

Mia Plays

What if she never reads?
Mia Reads

What if she’s not pretty?
Mia Green Shirt

The thing about fear is that sometimes it’s based on truth and sometimes it’s based on a lack of understanding. I still have plenty of fears for Mia as she enters school and then becomes an adult. I have fears that will never go away, but every single day, I am reminded that I’m not the only one fighting for a better world for my daughter. I realize that every single day I have to throw my stone in the water and hope that the ripples keep going. If we all keep throwing in our stones, think of all those ripples.

This week, Ruby’s Rainbow is finishing up their 3-21 Pledge drive. Ruby’s Rainbow gives scholarships to adults with Down syndrome who want to pursue post-secondary education. They’ve raised $100,000 so far. It’s amazing. I’m putting the link in this blog in case you want to donate towards the cause. https://www.rubysrainbow.org/321-pledge/

What if Mia gets to go to college? Now THAT is a big dream. It’s a good thing we’ve turned into big dreamers in this house.

Mia Dream Big

Process.

“Success is stumbling from failure to failure with no loss of enthusiasm.” ― Winston S. Churchill

A while back, on this very blog, I used to do a New Year’s goals list, and I would periodically report on my progress. I think I actually managed to keep a few of those goals for quite a while before I totally abandoned them. Typically I think I would just ditch the entire thing around spring or summer. I used to have unsurprising goals like lose weight, read more, or go green.

It occurred to me that the January after Mia was born that my goal setting seemed so pointless. I made one goal and that was to be more present in my life. I think I’m still working on that one. However, any other goal just seemed shallow. What did it matter if I was overweight? My daughter might need heart surgery. Who cares about books? How am I going to make it through IEPs? What’s the point of going green? I barely have time for the therapy appointments and doctor visits.

As things have been settling down more and we’ve reached a good groove with our special needs journey right now, I’ve sort of started to look back at those goals and think more about them. However, I’ve realized that my goals were literally horrible. What does “lose weight” mean when I can barely cook soup? So for the last few months I’ve been learning how to cook. I haven’t lost a pound, and I don’t care. Instead of just creating a goal, I’m focusing on the process.

It’s actually quite a bit like being a special needs parent. Sometimes you have to stop trying to work on the end game. “Get Mia to talk” is too big. Having been the mom of a late talker already, I know the process is difficult and can take years to get to real conversation and storytelling. Instead, I’ve been working on the process. Playing, mimicking sounds, receptive language – “bababa, lalalala, dadada, papapa.”

I think that is what made my goals so shallow in the past. I was so focused on the goal that I lost sight of the process. No matter what goal I tried, I always felt like a total failure when I couldn’t accomplish it. When the weight didn’t come off or I used too many paper towels or I read fewer books than I wanted, I just sort of gave up.

Watching Mia work toward a goal is like watching someone work a process. Mia didn’t just walk one day. It wasn’t a big surprise. She started pulling up at 9 months, started cruising a couple months later, started walking behind a walker last summer, started walking from one piece of furniture to another by last fall, and finally started walking independently at Christmas. It even took her a couple weeks after that to stand up without pulling up on furniture to start out. It may have taken her a long time to get there, but she got there. She worked hard every single day, and she got there.

While I appreciate each milestone and I am grateful for the progress, it’s the process that I find so inspiring. Nothing comes easy for Mia, but she just keeps doing it.

It may have come a little late this year, but I guess I do have a resolution for 2015 inspired by Mia – just begin the process, and if you fall on your face, just get back up before anyone notices. Oh and high fives and shouts of hoorays are required.

Living.

“In three words I can sum up everything I’ve learned about life: it goes on.” ― Robert Frost

After our prenatal ultrasound with Mia, I must have read 100 articles about soft markers. It seems silly now, reading all of those words that couldn’t offer any answers. At the time the simple blood tests to confirm the diagnosis didn’t exist, and I wasn’t interested in any test that included long needles and risks, no matter how small. I knew it didn’t matter what the test said; she was mine and I was hers and that was that. However, my conviction didn’t stop me from freaking out for the remainder of the pregnancy.

During that time, I just wished I could see something normal. I wanted to see some story about a family that just kept on going and didn’t come to a screeching halt, fall apart, and stop living. Okay, now I know that was pretty dramatic. I know there are a lot of stories about parents who really couldn’t handle the diagnosis or had children with many severe health problems and struggled quite a bit with caring for their loved one, but there are even more stories about families whose lives, even though they have had struggles and heartache, were going pretty well – great in fact.

So two years ago when I was blogging about my life with Mia, I really had no idea what was going to happen. Who was this little girl going to be and how were we going to survive?

After Mia was born, I ran across an article about Jamie Foxx and his sister who has Down syndrome. They asked what it was like to live with a sister who was born with a disability. Two years in, I realize that his answer was so true and perfect, “We don’t call it ‘living with Down syndrome’. We call it ‘living’.”

I do follow a lot of blogs written by parents with similar experiences. It helps in a number of ways – from thoughts on schools to potty training tips. One of the bloggers I follow suggested that maybe it was time to stop blogging. Now, I know that I’m just not the person to make big statements. When I need to write, I need to write. I’m with Maya Angelou when she said, “There is no greater agony than bearing an untold story inside you.”

However, I realized I’m running out of “big stuff” to talk about when it comes to Mia. The big stuff with Down syndrome is harder to talk about, and I have a toddler running around my house throwing things on the floor and a five-year-old that is requesting a Pokemon game.

And in the midst of all of this, the positive is far outweighing the negative and slowly but surely we’re getting to the “living” part. Here are some updates from the Mia front:

Mia is walking now. I know you’ve probably watched the videos in my feed. I just want you to know how much it’s changing who she is. We go to Fynn’s school and she walks up to the animals and points to ask “what’s that?” She walks into his classroom with the other toddler siblings to pick him up at the end of the day. She’s not a baby anymore. I can’t wait until summer to see her play in the backyard.

She wants to be a helper. Yesterday she insisted on helping me fold the laundry. She made her own pile and tried to mimic me.

She loves books. I know this goes without saying, given my Facebook and Instagram feed, but she loves them so much. She loves to look at them on her own, and she loves it when I read them to her. She is entirely self-directed when it comes to books. I don’t even need to point her in the direction of books. She plays with them so often on her own that I just pick her up every once and a while and we read together.

When it comes to Mia, the Jerry Seinfeld quote is true, “A two-year old is kind of like having a blender, but you don’t have a top for it.”

Just like her brother, Mia is content to play on her own. If I’m busy cleaning up or working, she finds something to do. It’s pretty easy to see what she’s been doing if I follow her path of destruction. Reading and clearing the bookshelf, playing with every toy in her toy box, making sure her dolls are happy, clearing out my game cabinet, and then playing with puzzles. That’s just the living room and dining room. The kids’ bedroom is a different story. I close the door.

While she’s saying very few words, Mia talks a lot and with a lot of inflection. I know she has a lot to say and I can’t wait to hear what all of that gibberish means.

Even Fynn is growing and changing so much. He’ll be six in May and I just can’t believe how fast it’s all going. How did we get here? A two-year-old and an almost-six-year-old?

Life did just go on and my thoughts about both of my kids has transformed from “what happens when?” to “I can’t wait until.”

Have a great week everyone!

The Red Pill.

This is your last chance. After this, there is no turning back. You take the blue pill – the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill – you stay in Wonderland and I show you how deep the rabbit hole goes. – Morpheus, The Matrix, 1999

Every now and again a certain question comes up: if you could take away Mia’s Down syndrome, would you? It’s not an easy question. You would think it would be simple, and maybe a year ago it would have been a simple answer for me. Still very raw from the diagnosis and first year, I would have said, “Yes! If I had a choice, I would ‘cure’ Mia.” I would have downed that blue pill and the story would have been over. I would have had my hypothetical child and moved on.

But what Mia has isn’t a disease. The extra chromosome is a part of her DNA. The very blueprint that makes up everything that she is has been intertwinded with an extra chromosome – from her slanted eyes to her sandal toes. It’s not just that Mia would be “typical,” she would be a completely different person.

If you asked me that today, I would say, “It’s complicated.” Would I take away the health problems? Absolutely, but I don’t know about the extra chromosome. Maybe it’s different kinds of acceptance or maybe it’s the real, beautiful, life-changing things that happened over the last year. Maybe it’s the people I’ve met or the opportunities for advocacy or finding out that there are important things about our world I need to know. Or maybe it’s that I love this little girl more than the one that sometimes enters my brain – the typical baby who never existed.

But I think the real answer is that Mia doesn’t really need to change. She is who she is. She was born with an extra chromosome and a lot of spunk. She isn’t the problem. It’s the world that’s the problem. It’s the prejudice against people with disabilities. It’s the belief that she’s broken and unworthy. It’s the way we view people who are different that’s the problem.

Why should Mia have to change? So her life is easier? So my life is easier? When were we all promised easy lives? And since when does typical equal easy?

Would it be nice if my children had easy lives? Sure, I guess, but I know easy is a fantasy. No one ever promised easy.

The extra chromosome may have been a fluke in DNA, a 4% chance, but the more I get to know her and watch her grow into the person she will become, the more I realize Mia is no accident. What was once a fluke in DNA has helped to build a beautiful person who inspires me daily to be better, do better, be stronger. Will her life be easy? No. Will it be meaningful? It already is and she’s only 2 years old.

If that is what this rabbit hole looks like, then I’ll take the red pill.

Same.

“We can only know that we know nothing. And that is the highest degree of human wisdom.” Leo Tolstoy

Last week, I met with a new babysitter. I always have a lot of anxiety about having new people come into my house in general, but more so with Mia. I’m simultaneously trying to educate about Down syndrome while explaining that she really isn’t that difficult to care for.

So, we were talking about Mia, and she very genuinely asked if there was anything specific she should be aware of when watching Mia. I thought about it and realized I was legitimately stumped. It was one of those moments when Down syndrome seemed like a big scary thing, but when I tried to explain how Mia was different than any other almost-two-year-old girl, I had a hard time coming up with something. It was actually sort of comical. I was sitting there wracking my brain to explain how she’s different. I came up with three things.

1. “Well, she can’t walk yet…but she can…but she doesn’t think she can.” She said, “Okay.”

2. “She doesn’t talk yet, but she understands what you’re saying so don’t let her fool you. I’ll show you a couple signs in case she uses them.” She nodded and smiled. “Okay. Sounds good.”

3. “She has a little separation anxiety, so she cries a bit more when we leave.” She said, “Yeah, that happens a lot.”

That was it, and it didn’t sound all that different from other kids. In fact it sounded like a lot of other kids.

I remembered working myself up for this talk. I was going to say, “Mia has Down syndrome,” and then the ceiling was going to cave in on us, and the world was going to end, and the sitter would run from the house. She really didn’t seem all that worried at all.

Our life with her is so typical. I know this. I know it’s not a whole lot different, especially at age two, but I still expect the pity looks, the worried faces, or the “I’m so sorry’s.” I brace myself for them.

When I talked to her some more, I started to describe Mia apart from the disability and the delays. I started to talk about what she really needs to know. For example: She climbs like a mountain goat so watch her like a hawk. She is fast and sneaky. She’s sassy and knows the word “no,” but she doesn’t always listen. She likes snuggles before bedtime. Even if she’s sad, she always wants hugs. Watch the kisses, they can be slobbery. She loves a good selfie if she’s in a bad mood. Being a goofball cheers her up.

The more I think about her, the more the Trisomy 21 is so secondary to her. I know that some people will only see the extra chromosome, but she’s so much more than that. I’m still learning that for other people to see past it, I have to see past it as well. I have to notice the more important things, like slobbery kisses.

I’m not afraid to say I’m still learning. I will always be learning.

Troubles.

“Man only likes to count his troubles; he doesn’t calculate his happiness.” ― Fyodor Dostoyevsky

I’m not going to lie. It has been a rough week.

I’m not sure when it started. I think it started on Friday when someone asked me a question when they met Mia. “Does she drool?” She doesn’t, by the way, she was just happily blowing raspberries in her stroller before I turned her around. She was bored. It stung.

And then I see it again – the list of things that are wrong. She is almost 22 months old and has poor postural support because of low muscle tone. She’s still using jargon and babbling, but she’s only using maybe two-three spoken words. She’s diminutive and immature looking when she’s with her peers. She can’t walk independently. I start seeing it, and the fear starts again. What is this going to be?

And then I was leaving the grocery store on Tuesday and I saw something else. A mom was walking in hand-in-hand with her daughter and I saw the tell-tale sign, and not the fact that she had Down syndrome. Her hair was just growing back. Leukemia. I don’t know that for sure, but it’s the first thought that popped into my head. Leukemia. Cancer. I walked back to the car with a knot forming in the pit of my stomach.

And then it all came flooding back. She has a hole in her heart. She has hypothyroidism. And people with Down syndrome have a high likelihood of childhood leukemia. I need to get her blood drawn in September. What is that going to show?

It was a rough week.

It was one of those weeks that I just didn’t notice her. I was just noticing Down syndrome.

And then I woke up. Her speech therapist was working on a skill yesterday, and she stopped with wide eyes.

“What?” I asked.

“Sometimes I forget that she’s not even two yet.”

“What do you mean?”

“I wouldn’t expect her to do these things at her age.”

And that’s what I hate about this diagnosis. I hate that it’s always a heartless chronicle of what she isn’t, of what’s wrong, and what she might never be. I hate that sometimes I only see these things. I hate that it’s a constant comparison to “normal.” I hate that we are just categorizing humans. Normal, delayed, “insert diagnosis here.”

I wish that I could just celebrate my awesome daughter who is doing amazing things every day without caring about her chromosomes.

It’s just one of those weeks.

Happy.

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” ― Ralph Waldo Emerson

A friend of mine and I have been discussing something interesting lately. Both of our kids with Down syndrome have been acting like typical toddlers – throwing things, temper tantrums, total destruction, asserting independence, and stubborn attitudes. For some reason, both of us had this idea that we’d skip this phase – the toddler phase. I didn’t really quite understand why I thought this until Mia’s speech therapist said sarcastically, “You only thought that because everyone told you she would be happy and easy going. Didn’t you know all kids with Down syndrome are happy all the time?” I laughed because, of course, I’ve learned that is not true at all. Kids with Down syndrome are like every other kid. They have bad moods, cranky times of the day, sad moments, and happy times. Just like everyone else, they are complex individuals, not just grinning automatons.

So now I have a toddler who needed to be removed from Best Buy the other night because she was having a tantrum because I wouldn’t let her explore the appliance section. I’ve been thinking about how all of these stereotypes formed over the years. Why would people assume that every kid with Down syndrome is happy? Was it part of some sort of reassurance for the parents? Well, don’t worry they will be happy. They won’t have a care in the world.

The reality is that people with Down syndrome do have cares, a lot of them. They have just as many as everyone else. I think that often in order to help the family, we talk about children with Down syndrome as being happy, angels, blessings, but don’t acknowledge that they are unique individuals with hopes, dreams, goals, sadness, and struggles. They happen to have an extra chromosome, but that doesn’t take away their humanity.

As we raise Mia, I think one of the biggest hurdles we’ll face is allowing Mia to be an individual in spite of these cultural stereotypes. How do we let her uniqueness shine through, even though society wants to confine her. At least Fynn is good at letting her be who you don’t expect. He introduces her this way, “This is Mia. She’s my sister. She is a trouble-maker. She makes so much trouble.”

I can’t wait to see who Mia will become. I’m sure there will be so much trouble. I’m counting on it.

Work.

“If you don’t know where you’re going, any road’ll take you there”
― George Harrison

Maybe it’s that Fynn is going to school next year or that Mia’s therapists have been talking about school, but I’ve been thinking of not only school but work. A couple years ago (or a few?), I stopped working to stay home with Fynn and then Mia. I’ve never regretted the decision. I mean, I don’t usually regret things that have to do with my work. I just do what I do. Whether it’s working in the arts, event management, PR, financial aid, going to graduate school, or just staying home, I just do what I do. Does it need an explanation?

Throughout the years, I figured that I would just take one opportunity and then the next and then eventually I would know what I wanted to do, you know, for a career.

And now here it is again, that question. “What do you want to do?” I know what I don’t want to do. I guess that’s a start. The problem is that I still don’t know.

I read an article recently that quoted someone who quoted someone else (don’t you love those?), that said that you should do what you wanted to do in second grade. Apparently when you were in second grade, whatever it was you wanted to do was what you were supposed to do. I’m going to be really honest here. Maybe it’s the lack of sleep or that more brain cells died during pregnancy than I thought, but I cannot for the life of me remember what my second grade self wanted to be when she grew up. Do you? I can barely remember what teacher I had in second grade. Maybe I was just so desperate to leave my small town that my only wish was to live in a city. I guess I accomplished the desires of my second grade heart. Crap. Now what?

In the meantime, I guess I’ll have to figure it out. Good thing I still have a little while. In the meantime, I think pool time is near.