Little Writer Monkey

“I have discovered in life that there are ways of getting almost anywhere you want to go, if you really want to go.” ― Langston Hughes

It’s a little early in Mia’s life to figure out her personality. She doesn’t cry much. She is a little fussier than her brother was when he was her age. Although, those who knew Fynn as a baby are thinking, “She’s probably still pretty good since Fynn was the ‘magic baby who never cried.’” So, yes, she is still pretty easy. She loves to snuggle and she loves to move.

When Mia was born, she had what many children with Down syndrome have – hypotonia or low muscle tone. It basically means that if you pull on her limbs she has very little resistance. Also, when you would pick her up, she was like a rag doll. The only real treatment for this problem is lots and lots of physical therapy and opportunities for exercise.

You can imagine that this could be a pretty significant challenge in a newborn, especially one with other potential developmental issues. You can put children on their tummies all day every day and bug them until they cry, but if they don’t move or try to lift their heads, there’s not a lot you can do. Encourage, encourage, encourage…that is all. Of course, this was something I worried about – especially when you hear stories of children with Ds not walking until age five.

Enter Ms. Mia Katarina. Her middle name is a derivative of Katherina – the “shrew” from Shakespeare’s Taming of the Shrew (one of my favorite plays), and she seems to have taken on one very important characteristic of her namesake – she’s headstrong. She has a stubborn determination that is quite impressive. I’m sure I’ll rethink this choice of name when she’s 16.

She definitely does not just lie there like a dish rag while on her tummy. She spends the entire time wiggling, kicking, pushing her head up, and even trying to roll over. She rarely cries. Usually it means she’s finally exhausted. My daughter impresses me every day. She started from nothing 6 weeks ago, and all of her hard work and determination are paying off. She’s reaching milestones – something that we didn’t know when or if it would happen.

We’re having a lot of wins now, and I’m thankful for that. It won’t always be the case. But even if she doesn’t walk until she’s five, I know it won’t be from a lack of determination.

I wish I had half the determination that this little girl has. I watch her and think – I complain about an awful lot of things that are completely within my control to change. The New Year is coming up, so I’m thinking about losing the baby weight, getting in shape, getting organized, reading more, and numerous other dumb little resolutions. There are a lot of things that are completely out of this little girl’s control. She was dealt a difficult hand. I’m not sure what is inside her that is making her work this hard when she could just lie there – instincts, personality? Does that go away as you get older? Will it ever go away for her? I don’t know.

But what I do know is this – in six weeks, our little newborn has taught us that “if there’s a will, there’s a way.” I’m excited to see what she does next. And in the meantime, I should stop making excuses.

“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.” – Lao Tzu

Over the past year, I’ve asked myself a lot of questions. One of these very important questions was: “How will this new baby affect Fynn?” This question became even more important on November 5. Before Mia was born, Down syndrome was only a potential diagnosis. When she was here and Down syndrome was no longer an abstract concept but reality, I had to figure out how this would change all of our lives – including Fynn’s.

Early in the fall, I listened to an author discuss the challenges of being the sibling of a child with a disorder like Down syndrome or Autism. She discussed resenting the continuous appointments for her younger brother, expectations of perfection placed on her, feeling ignored, and general family hardships that go along with having a child with a disability. It was difficult to hear. What was I doing to Fynn?

Then I realized that I needed to hear that. I needed to be aware of how he might be feeling. It was important for me to listen and be prepared to be sensitive to Fynn and his life, not just Mia’s.

Every day, I look for ways to have special Fynn/Mommy time. Today when Mia was taking an afternoon nap, I gathered Fynn up and we spent time playing games, coloring, reading, and just being together – just me and my buddy. Snuggles, laughter, high fives, and love – pure bliss on a Monday afternoon.

Today was easy, but the reality is that every day won’t be as easy. But we were never promised an easy life. We’re all going to have to adjust, be flexible, and go with the flow. I haven’t always been good at letting reality be reality and going with the flow of life. Our entire family will be getting a lot of practice doing that very thing.

And when I start to worry and lose my nerve (which I usually do) –

“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” John 16:33

Preface: Today was much harder for others – impossible in fact. Praying for strength for the victims and families in Connecticut. I can’t even imagine that kind of sorrow.

Normal

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Albert Einstein

It wasn’t a good day. My excitement for Mia’s rolling was met with: “it’s not like she’s developmentally advanced or anything.” Sigh. No kidding. Okay, I realize she’s not developmentally advanced. I realize that these are normal things that happen. Did she roll early? Yes. Will it happen again in the next 6 months? Who knows? Here’s the thing. She’s physically capable of rolling. The hours of hard work have paid off. She’s not a limp child lying on the floor.

When you have a kid with a disability, the doctors, nurses, and therapists tell you a lot of good things that your child will be able to do (so you don’t completely freak out, I’m sure), but they also tell you the possible negatives – cognitive delays, physical delays, leukemia, blood disorders, deafness, early onset dementia…I could go on and on. So when your child does something very normal (and maybe a little ahead of schedule), you feel like throwing a party. Most parents throw little parties when their children achieve milestones in general – even with “chromosomally typical” children. (Feel free to smile, it’s my favorite description.)

It’s going to be a long, sad life if we aren’t allowed to celebrate normal. Do I constantly need to be reminded that she’s different? Does she always have to be “the other?” Is that fair? Does she get to be human?

It’s a struggle – a fight between optimism and pessimism, between faith and despair.

There’s so much wrong with today. It’s a cruel, dangerous world. Inspiration is in short supply.

But –

“I do not believe this darkness will endure.” ― J.R.R. Tolkien

“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” Dalai Lama

When I was pregnant with Fynn, a lot of scary things went through my head – things that could be wrong with him. I think every pregnant woman does this from time to time. I decided that the worst thing that could be wrong with Fynn would be a complete lack of empathy. Of all the things that could be “missing,” what if he was missing a conscience? It’s actually a pretty terrifying thought. People who don’t care about others can do horrible things. Instead of a human, you’ve created some kind of monster. (Now don’t forward this on to pregnant women. It might give them nightmares.)

After Fynn was born, I actually looked for signs of empathy, signs that he had a conscience. It became pretty clear early on that Fynn not only cared about others, but he had a highly developed empathy gene. It wasn’t just me who noticed. When he was in daycare, teachers from the other rooms would come to Fynn’s and give him a hug so he would pat their backs. When the other children would cry, Fynn would put his hand on their shoulder and tell them, “Okay, okay.” There was one time when a boy pushed a chair off the table, and the teacher disciplined him and told him to put the chair back. The child threw a tantrum and cried. Fynn walked over, put the chair back, and told the teacher and the child, “Okay now,” and then patted the little boy on the back. The teachers said it was remarkable for a 2-year-old – he had so much empathy.

Even at the playground, Fynn is very concerned when other children fall or get hurt. He always asks children if they are okay or tells them that they should be careful. He’s quick to point out when a child is sad or upset. He makes sure to tell their parents (who are very polite, even when I apologize for Fynn “helping” them when he’s out of ear shot).

The two weeks after our ultrasound were probably the worst two weeks of the pregnancy. We had told people Mia’s gender and we had told some of our friends and family about the potential diagnosis, but I was having a really hard time understanding it and I was very afraid and sad. I tried not to let my little guy see me upset, but it’s hard when you’re in the house all day long.

One morning when I couldn’t hold in the tears anymore, I rushed to the bathroom and sat on the floor and cried. Fynn was watching a T.V. show so I thought I was safe, but then I heard his little feet walking toward the bathroom. He peaked in and said, “Mommy okay?” I said, “Yeah, Fynn, Mommy’s fine.” He said, “Mommy sad?” I said, “A little.” He came all the way in the bathroom, stood next to me, and rubbed my back. “Okay, Mommy,” he said.

Sometimes, I think about the “master plan.” I like to believe I’m part of some plan of God’s that I don’t really know yet.

Maybe there is a reason we had a little boy with an extra empathy gene before we had a little girl with an extra 21st chromosome.

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” Helen Keller.

Those of you who know me well know that I am not an optimist. I’m probably the worst kind of pessimist – a sarcastic pessimist. Following Mia’s potential diagnosis, I envisioned a life that Nate, Fynn and I would have. It didn’t look very nice. It was fraught with failure, frustration, judgment, angst, and just downright disappointment. The last thing I envisioned was “normal.” I tried to hold out hope, but every day was a battle between my natural pessimism and my faith.

So when Mia was born and I held her, I was surprised by how “normal” she was. Sure, she had some symptoms of a child with Down syndrome. She had low muscle tone, a heart murmur, etc, but she also nursed, snuggled, and cried – everything a “normal” baby does. She made me realize, even after all of my research and preparation, how (for lack of a better word) ignorant I was. She was gorgeous and amazing, not something to be feared. And for those of you who’ve met her, you know, she’s about the least scary baby there is. She’s a content, chunky, healthy little sweetie pie.

She is definitely not what I envisioned. I would not have envisioned a baby, who was supposed to be a limp noodle with no muscle tone, lifting her head and looking around at 2 weeks. I would never have envisioned that my 5-week-old daughter would roll over for the first time ahead of schedule (even for typically developing babies). I never would have envisioned her studying our faces and the world around her with such intensity that it still shocks me a little. I never would have envisioned that she would be “normal.”

With that said, even though my optimistic side is starting to come out a little, I’m also a realist. She has a serious, life threatening birth defect that will cause global delays. So, it’s not a matter of if but when those delays occur. What I do know is that I won’t be the one to set the date. I’ll follow her lead because it’s her life; I am merely her teacher and cheerleader. I will do whatever she needs me to do in order for her to reach her fullest potential – and then I’ll do more. Just like Fynn, I will encourage her to do whatever she puts her mind to, and I’ll be there to support her all the way.

Will she fail? Of course, failure is part of life, but she already has so many cheerleaders to encourage her to try again. Will she be frustrated? Sure, what part of achievement doesn’t come with frustration? Will she be met with judgment? Yes, because it’s a cruel world. Fortunately, she’ll be shielded with love. Will her life be filled with angst? She’s human. All humans are filled with angst – especially teenagers. Will she be disappointed? Yes, but we’ll be there to remind her of her blessings.

I refuse to spend my life or my children’s tempering their dreams and using words like “can’t”. I’d rather do what Einstein once suggested, “Attempt the absurd to achieve the impossible.”

2013 is right around the corner. A New Year is the perfect time to start attempting the absurd.

“I am convinced that most people do not grow up…We marry and dare to have children and call that growing up. I think what we do is mostly grow old. We carry accumulation of years in our bodies, and on our faces, but generally our real selves, the children inside, are innocent and shy as magnolias.” Maya Angelou

There are two moments in my life when I remember being truly terrified of growing up. When I was seven years old, I was in bed one night and had convinced myself that growing up meant the end of life. I remember surrounding my little body with stuffed animals and begged God to let me stay little forever. Another moment happened when I was 21 and had just graduated from college. I dropped Nate off at the airport for his flight back to California, and I drove to my new apartment alone. I sobbed for five hours straight. I was terrified of doing grown-up things, like living all by myself and looking for a new job.

Most days I still feel like that 7-year-old kid or the 21-year-old college graduate. But sometimes, I’m pulled back into adulthood and it’s not always a pleasant experience.

Sometimes adulthood has weight to it – real heft. When I first heard the words “Down syndrome” from the perinatologist, I felt like someone had climbed onto my chest. The weight. I knew what that weight was – fear and grief. As the last 20 weeks of the pregnancy wore on, even when we didn’t know for sure, I started to be able to carry the weight. It stopped being so heavy. It was going to be what it was going to be. I know that’s a terrible cliché, but there it is. She was never going to be anyone other than who she was – it was literally written in her DNA. She was born and I was okay. She was mine and I was hers.

But there was one moment in the hospital, when the fear of adulthood crept back in. It was the middle of the night, and we were alone together. I was looking at her sweet little face and I felt pure terror. Not terror of her or her diagnosis or that I didn’t have my perfect child. I had stopped caring about perfect months before. I was terrified that I wasn’t good enough, and that she deserved someone better than me – a real adult.

I now realize that Mia just needs someone who is going to understand. Growing up is going to be difficult, full of challenges, and downright terrifying. We’ll embark on that together. But maybe Maya Angelou is right and she’ll just get a version of my 7-year-old self instead of a grown up. Maybe that’s okay.

We’ve all needed to pull the covers over our head and beg for time to stand still now and again.

“True life is lived when tiny changes occur.” – Tolstoy

New baby, new big brother, new parents, and a coming New Year, so maybe the changes aren’t so tiny.

I do love change. I love Christmas because it means a coming New Year. I love new challenges and new places. One of the reasons Nate and I don’t have a house and live in our apartment is that our apartment is impermanent. Sure, we’ve lived in the same building for 11 years, but there is something comforting to me about being able to “move at any moment.” Granted we’ve had the opportunity to move and passed numerous times, but I still could without really much of a hassle.

We are hoping to buy a house this year – just plain running out of space with two kids and 11 years worth of “stuff.” Memories…I guess you call them. Or junk.

We’ll need to find some kind of compromise place in Milwaukee, because I’m not ready to move off the East Side. I’m not ready to leave my lake view. I’m not ready to leave our parks, our lakefront, our museums, and our coffee shops. I’m not ready to leave the city. I grew up in the country. I grew up in the woods. You’d think I would have loved it, but I love this much more.

I love that Fynn gets on the elevator and yells, “All aboard!” I’m not sure how much our neighbors love it, but they haven’t complained. I love that Fynn and Mia are within 5 minutes from 2 children’s museums, an art museum, and the public museum. I love that they are within 5 minutes from Central Library and its architecture and awesome children’s room. I love that we are within walking distance from Lake Michigan – or that we can see it every single day from our giant east-facing windows – well, unless we’re fogged in, but then we can hear the fog horns.

I know we don’t have a lot of space, but Fynn and Mia aren’t ready for space. As I type this, Fynn is playing next to me on our ottoman, and Mia is playing in her gym inches from me. We just like to be together right now. I love being able to reach over and give them a squeeze. Our playroom is our living room and I love it (everything except the clutter, but kids are messy).

The other day I was feeling guilty about urban living, about having children in a city. Then we walked into the apartment and Fynn said, “This is my house. I love my house.” I guess we bloom where we’re planted. I’m sure he’ll love the next place too, but I hope he always remembers living here. I hope he always remembers being a city kid.

I hope he always remembers our circa-1935 elevators that everyone is afraid to ride, except him.

“Kind words can be short and easy to speak, but their echoes are truly endless.” Mother Teresa

It sounds like a little thing. Not many people would understand why this little thing was such a big thing to me.

I have a lot of faith that things will be okay, that Mia will be okay, that our family will be okay, that I will be okay. But I’m fearful. Who wouldn’t be? I’m fearful of the future. Of the next year, the next five, the next 20. I love my friends, I do. You are all awesome, amazing people. But like anything in our lives, you don’t “really know” until you’ve lived it. You’ve all been amazing. You’ve all said all the right words and done all the right things, but fear is a pervasive thing.

All the experts – our pediatrician, the therapists, the nurses – have said the same thing. “You should talk to someone who has a child with Down syndrome.” In fact my pediatrician AND my son’s therapist have already called parents they know and said I could call them, but I’m a coward. What would I say? “Hi, I have a kid with Down syndrome and so do you, we should talk.” I don’t know how to say that because I’m an introverted chicken.

The fact is that I know a mom who has a child with Down syndrome. I’ve talked to her about her son. I’ve met her son. I have her cell phone number in my phone, and I was too afraid to call her. I wasn’t sure what to say.

So when she called me, I cried. When I heard her message on my phone I burst into tears. I really needed to talk to her and didn’t realize how much until I called her back and couldn’t stop talking and listening and hearing her understand me. It was such a little thing. Just a phone call.

Thank you, friend, for picking up the phone when I couldn’t.

It was a simple, kind thing, but it meant a lot to me.

Our darling little Mia Katarina was born on November 5, 2012. She’s beautiful, sweet, cuddly, and we love her to pieces. Mia was also born with Down syndrome.

This was not a shock to Nate or me. When we went in for our 20-week ultrasound, the perinatologist found a soft marker for Down syndrome. We declined the amniocentesis for a number of reasons. We did ask for a level 2 ultrasound to examine her heart and other organs more closely at 24 weeks. She passed that exam with flying colors.

After Mia was born, they performed an echocardiogram. She was diagnosed with a VSD – ventricular septal defect – or a hole in her heart. It is very common among babies born with Ds. She also developed polycythemia – which means her body was creating too many red blood cells – and jaundice. She spent two days in the NICU drinking lots of fluids. She’s a tough little girl and was a great eater so she didn’t need to have an IV or other invasive procedures. Mia’s levels when down for both the red blood cells and the jaundice, and she was sent home – to two relieved and happy parents.

We will see the cardiologist on November 27th to check her VSD, and then I’m sure we’ll start the “wait and see” process. So far, her only other health issues are her hearing and low muscle tone. She failed her hearing test at the hospital, so we have an appointment with an audiologist. To combat her low tone, we have to be super diligent about tummy time and making sure she has lots of opportunities to use her muscles. We’ve also been assigned a physical therapist from the hospital to bridge the gap until “Birth to 3” services start. Given the list of possible things that could be wrong, we are extremely blessed that she’s doing so well.

There is amazing support for families and children with Down syndrome in the community, and we already have our assessment appointment set up with “Birth to 3.” As many of you know, we’ve been down the therapy road with Fynn so we sort of know what to expect.

Many have asked how Nate, Fynn and I are doing. Fynn, of course, is doing great. He loves his baby sister and is so happy to have her home. He refers to her as “baby sister” instead of her name which is ridiculously cute, and he loves taking pictures of her. He’s adjusting really well to having a new little one in the house and impresses us daily with how much he’s taken on the “big brother” role.

Nate and I are also doing well. We did a lot of praying over the last few months that little Mia would be born healthy – no matter what her chromosome count would be. I’ll admit that the last 20 weeks of the pregnancy were not so much fun – lots of worry, heartache and fear, but God gave us an opportunity to lean on Him and that is exactly what we did. And trust me, she’s far less scary now that she’s here. She’s just a sweet little baby doing what sweet little babies do.

If you have any questions, please feel free to ask. Thank you to everyone for your thoughts and prayers. Our friends and family have been amazing. Love to you all!

Erin, Nate, Fynn, and Mia