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.

Denial

“Truth is stranger than fiction, but it is because Fiction is obliged to stick to possibilities; Truth isn’t.” ― Mark Twain

Sometimes I binge on blog reading. When I’m really in a mood, I also read the comments. The other day, I was reading a blog entry by a mother explaining her love for her child with Down syndrome and some of the wonderful qualities her child possesses. As I was scrolling through the comments, a few people lamented her positive attitude, complaining that it’s not positive for everyone. A few others accused her of being in denial about what the journey with a child with a disability is really like.

It made me start to wonder – do people think I’m in denial? Do people think that this journey must be much harder than I’m portraying. Do people think that I’m really sitting in my house depressed and heartbroken?

What is the truth? I suppose with social media and blogs, we are able to paint whatever picture we want of a situation. I was in public relations. While I always told the truth, I suppose there were moments when I might have painted a much brighter picture than I probably should have.

Before I tell you what our truth is right now, let me explain something very important. People are as different as snowflakes. Every single person on this planet is unique from all the others. My friends with twins can attest to the differences, even though their DNA is identical.

If every single person is completely unique, then every single situation is completely unique as well. My journey with my child with Down syndrome will be very different from my friends’. The ways in which the third 21st chromosome affect a person are infinite.

So what is the truth? The truth for me, and I can’t speak for a single other person in the world walking my path, is that our life is good. I’m not going to say that there aren’t moments when I get sad for my daughter. When I see another child walking easily or talking a mile a minute, I get a twinge of sadness. When I think about how other children don’t need blood draws every six months or multiple therapy appointments, I feel sad. Of course every single moment is not awesome.

But when she belly laughs, gets into trouble, tries to put on her clothes (because she loves clothes – little fashionista), scribbles, plays with her toys, pesters her brother, or gives hugs and kisses, I’m reminded that she’s just a little girl. I’m constantly reminded of her sweet uniqueness.

But this is my truth. This is my reality. I speak for no one else with a child with a disability. I think it’s dangerous to say that everyone will have the same experience. It’s just not the truth. The possibilities are endless.

I also can’t say that raising a child without a disability will be great either. I can’t promise that the typical child will be easy to raise. I can’t promise that they will always listen, never talk back, get straight As, go to Harvard, or take care of you when you age.

I can’t promise a new mother of a child with Down syndrome that her journey will be wonderful. I can’t promise the mother of a typical child that her journey will be wonderful either.

The only thing I can be remotely sure of is that life will go on.

God willing, the sun will rise in the morning.

And when each new day comes, I remember that I need to decide what to do with the time that is given to me.

“The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.” ― Maya Angelou 1928-2014

Renovation.

We picked up our keys on Thursday, promptly went home, changed, and headed out to work on our new house (with a quick stop over at Home Depot, of course).

We ripped up carpet and cursed the person with the staple gun who installed it.

We took down valances.

We started raking the backyard.

We met new neighbors.

We purchased our washer and dryer (they come on the 1st!).

Mia has tried to climb the stairs multiple times (baby gates on the list).

And Fynn has cried every single time we’ve left the house, even though we promise we’ll be coming back.

Some photos of our last two days.

Keys

Yard

Living room 1

DR2

Bedroom 1

Living Room 2

DR1

Bedroom 2

Lving Room 4

Lving Room 3

City.


“But cities aren’t like people; they live on and on, even though their reason for being where they are has gone downriver and out to sea.” ― John Updike

I can’t believe it’s almost here. Tomorrow, my family is closing on our first home. We have waited a long time. I’ve had a number of reasons, excuses, and rationalizations for why we didn’t buy a home sooner, but it all boils down to one thing – before now, we didn’t want one.

I know that sounds a little crazy, right? Everyone wants a house, right? I really didn’t. I couldn’t decide if I wanted to stay in Milwaukee. I couldn’t decide where I would want to buy a house. I didn’t want to commit to at least 6 more years, maybe longer. Living a sort of flexible life in an apartment has had appeal.

It’s not that I don’t like Milwaukee. I don’t see it as any better or worse than any other city. I think we can get caught up in the “grass is greener” approach to life. Are there more opportunities for art or culture in other cities? Of course there are, but I’m sure there are people in New York who have never experienced an opera at the Met or stepped foot inside the Guggenheim. In Milwaukee, we have the same opportunities to either experience art or ignore it as any other urban dweller. And we have lots of beer, so that’s cool too.

Right now the country doesn’t appeal to me. I find comfort in the anonymity of a city. I’ve found comfort for the last 12 years that I’ve lived six or eight stories in the air and surrounded by people. I have also loved the noise of the city – cars, ambulances, and people talking outside. The ambient noise is soothing.

With that said, I’m looking forward to what a new house will bring. Of course, we’re not leaving the city. Although, we’re on a quiet street so I’ll have to get used to that. I won’t have the constant hum of the traffic outside my window.

Fynn has been excited for the new house. He hasn’t really expressed why. We’ve been bringing up the yard and his new room. I just think he’s excited for the newness of it all. I’ll be waiting to see if he asks to go back to the city house. The strange thing about the apartment is that he’s identified himself as a “city kid.” When tall buildings become more visible when we return from venturing to the suburbs, he says, “It’s my city. I love my city.” I’m glad we’re not moving too far away.

So tomorrow we close and then we’ll move. I’m excited and stressed and nervous all at the same time. I’m looking forward to making this new house our own.

And of course, I’m looking forward to my very own washer and dryer.

House hunting.

“Home is the nicest word there is.” ― Laura Ingalls Wilder

Yep, you read that correctly. Nate and I are house hunting. Biting the bullet. Giving in. Reluctantly agreeing that maybe we need more space and parking.

Even though we’re ready to look, I can’t help but get a little sad when I look out my front windows at the lake. I do love that view.

Above the normal house purchase wants and needs, there are two important requirements – to be in Milwaukee County so Mia doesn’t have to change all of her therapists and a public school that has an excellent rating.

That has been the toughest part about this whole thing – the schools. There are houses that are just off the list because the public school rating is a 1 or 2. And you see, I have to have a public school back up because private or parochial school isn’t necessarily an option.

I just hate it that Mia’s disability complicates things. I’m really sad that sending her to a parochial or private school would be really, really hard. I understand all the reasons that schools can’t handle special students – cost, time, and teachers. I get it. It just doesn’t feel any better. It doesn’t feel very good that she’s shut out because of her disability.

I know they would try. I know they would give it a shot, but I’m afraid of the day that they come to me and say, “We just aren’t able to meet her needs.” I’m just afraid of the day when it all comes crashing down around me, and I have to move her out of the school that she loves and into a new school.

But we’ll figure it out. We’ll get into a house in a good school district because someday I’ll have to send Mia to school. Thankfully she’s only 16-months-old so I don’t have to share her yet.

So we’re looking for a house and trying not to have cold feet. Fynn asked for a house with 100 stories because he’s already lived in one with nine. I said we’d see.

Advocate

“The life so short, the craft so long to learn.” ― Hippocrates

I have to say that this Sunday has gone much better than last Sunday. Last Sunday, we were taking Mia to the emergency room at Children’s because she couldn’t breathe without difficulty. It was a long week. From the ER we were transferred to the Pediatric Intensive Care Unit for two nights, and then we were transferred to a regular hospital room for two more nights. In those four nights, we saw no less than 30 medical professionals. It occurred to me as new people entered the room, suggested procedures, suggested problems Mia might be having, suctioned, nebulized, dosed with medications, that something had gotten out of hand. Somewhere around night three, I started to wonder if the doctors and nurses had even read her chart. Some of their statements were odd, some of them didn’t know she had a trisomy disorder, and some of them looked confused when I said ventricular septal defect.

It has left me with a chilling feeling. With Fynn, we hadn’t had many trips to the hospital. Aside from one broken leg, Fynn has been remarkably healthy. He even contracted RSV this week and he cleared up in two days. With Mia, this is going to be a life-long struggle. She’s healthy and has minor problems, but health issues will inevitably crop up. How do I remain clear-headed, informed, and strong in these healthcare situations? It’s not in my nature to question doctors. I don’t question authority. My natural inclination is to say yes and to please those in authority.

I guess the big question is how am I supposed to be her advocate? I don’t want to be THAT mother. I don’t want to alienate those caring for her. I’m struggling with how to navigate this world. How do I educate? How do I help her when the healthcare professionals that I need to rely on in an emergency don’t really understand Trisomy 21 or even know that there are AAP guidelines for care?

How am I supposed to be her advocate in a system that feels broken? How will I know what questions I need to ask? How am I supposed to help her when I barely understand all of this myself?

That feeling has cropped up again. I feel scared.

Pain.

“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