Expectations.

“If you look for perfection, you’ll never be content.” ― Leo Tolstoy

In my last blog, I said I hadn’t found a “lesson” in my divorce. But that’s not exactly true. I may never be able to find a bright side to all of that, but I have learned a few things about myself. And on the eve of Mother’s Day, I thought I’d write about one.

Expectations.

You know, prior to all of this, holidays were sort of … disappointing. For example, on Mother’s Day, I would wake up in the morning and expect something to happen. I’m not sure even what. Breakfast in bed? A gift? A plan for the day? Something? But what would happen is a quick “Happy Mother’s Day” while I changed a diaper and a “What do you want to do today?” Deflated, I would suggest a few things, but all were usually met with, “Really? That? It’ll be crowded.” Or “The kids will be a nightmare.” And then we’d agree on something to do, but I always felt like no one really wanted to be there. I’d end the day a little sad and think, “Maybe next holiday?” or “Maybe next year?” But inevitably, every holiday was the same. I would work myself up about what it was supposed to be like, and then it would all come crashing down around me.

Now, don’t think I’m sitting her blaming my ex for failing to meet my expectations. Because what I learned about myself? Is that no one was going to meet those expectations. Because we were living in real life and not in a movie. Real diapers needed changing. And real kids needed to be fed. And we were real people who were really tired.

The first Mother’s Day after my divorce was a turning point for me with holidays. It was a bad weekend. Things were still raw. The kids were with their dad the day before. Things were not good between us, and then Mia woke up with strep. I was changing her in the morning and she was covered in a rash. The same rash Fynn had the week before. I called urgent care, set up an appointment and then crawled into bed with both kids to watch cartoons.

And I felt grateful. It’s so hard to explain. This feeling of gratefulness washed over me because I realized I got to do exactly what I loved on Mother’s Day. I got to be a mom.

I used to both anticipate and dread holidays. I knew that I would wake up in the morning excited and then go to bed at night sad.

Because … expectations.

Since that day, I wake up on holidays with literally no expectations. I plan for them. I bring the magic when I can, but I don’t expect anything from anyone. I don’t expect to feel anything. And every holiday since that day has been really wonderful. Have they been perfect? Ha! No. Strep and potty accidents and messy kitchens and meals that go uneaten.

But I’ve gone to bed happy every single time.

And because I don’t have these expectations, I’ve noticed how much room I have given for my kids to bring their own magic. Fynn has, so far, insisted on decorating the birthday cakes. He’s already planning what we’re doing tomorrow, though if it doesn’t happen it won’t matter.

Not to sound like a sappy TV movie, but all that matters to me is that I’ll be with them. Kissing foreheads, making dinners, caring for them (maybe sneaking in some book reading if I’m lucky), and loving them. That’s it. And it really is enough.

I often think about how I got in the way of my own happiness. How I expected something magical to happen to me during holidays. I expected someone to do something to “make me” feel some way about these days. And since I don’t expect it anymore, what I feel is grateful and happy.

I hope everyone has the Mother’s Day they want. But if you don’t, I hope you’re able to find the bright shining spots anyway.

Happy Mother’s Day, mamas! I’m grateful for all of you!

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Three buses.

At the temple there is a poem called “Loss” carved into the stone. It has three words, but the poet has scratched them out. You cannot read loss, only feel it. ― Arthur Golden

I started last week with such high hopes. I had a great weekend with the kids, I was happy, content, and things seemed great. It ended with me sobbing in a pillow for 4 hours. Allow me to explain.

I mean, I had plans this week. So many plans. I was going to be very nerdy and have a “system” for working. And Monday went great. Even Tuesday went okay.

Then I went to Mia’s endocrinology appointment on Tuesday afternoon to talk about her thyroid. I was expecting easy. I was expecting that it would be like every other appointment. “Still looks good. We’ll keep monitoring!” …is what I thought they were going to say.

And then her doctor pointed out the massive increase in thyroid stimulating hormone in her body and that she would need to go on medication. For the rest of her life.

And BAM! I got hit with the Down syndrome bus. I hate that damn bus. The rest of her life.

I mean, it’s not a huge deal. It’s one pill and so far she’s just taking it. And then she’ll need monthly blood draws until they determine she’s on the correct dose.
But the rest of her life.

And while I was still lying on the pavement, the divorce bus came along.

I don’t normally talk about my divorce here on the blog. Mostly for the kids, but also because I’m still trying to figure out what “lesson” I’m supposed to take away from it. I just can’t seem to find one.

But I feel like I have to talk about this to spare other families from doing the same thing.

Divorce is loss. That’s what it is. Whether you wanted it or not. It’s loss. Painful, debilitating at times, excruciating loss. Loss of dreams, of future, of things you hoped would be. Loss.

I got my first letter, a written letter, asking for a gift back from my ex-husband’s family. Not a family heirloom or anything like that. A gift. Made for me. And I understand.

But loss.

And I had already given it back. Over a year ago. Because I treasured it so much and what it meant that it broke my heart every day to keep it. Because it meant being a part of a family. And now I wasn’t.

That one hurt. A lot. If your family is ever in this situation, don’t do that.

And then I reached for the phone to call my mom. To talk through how I was feeling.

And I was run over by the Alzheimer’s bus … just waiting in the wings. Because she wouldn’t understand.

Loss. You guys, I had all of these plans for the week. And there were lots of good parts.

But these damn buses. All this loss.

This is the part of my blog where I look for the bright side, right? Because I think down-deep. That’s me. Under all the sarcasm and snarky-ness, is an optimist. I hide her pretty well. But I can’t help thinking, “That’s enough despair.”

Do you ever have a moment where you wish you could pause time for just a minute, rewind and play it back?

I was dropping the kids off for school on Friday, and it was raining, so it was a quick good bye before Fynn had to run into the school. He started running, I waved, “Bye, Fynn! Have a good day.” And he stopped, turned around, and ran back, and said, “I forgot my kiss!”

My heart.

That’s enough despair. The kids came back early from their dad’s last night. We’re all still sitting here on Sunday morning in our pajamas and the sun is shining outside. The trees are budding and the grass is green.

I’ll never be able to step out of the way of these buses. I get it. Down syndrome, divorce, Alzheimer’s. I hope that over time, it just takes less time to get back up.

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Success

“Success is not final, failure is not fatal: it is the courage to continue that counts.” ― Winston S. Churchill

When my daughter was born, I had lots of ideas of how all of this would look. How she might take longer to reach milestones, but she’d reach them. How life might look different, but the same. Just slower. Things would just take more time. Life would be life, but it would just take longer to get there.

But over the course of five years, I’ve realized that my very definition of success has changed. It’s not just celebrating the little milestones. It’s a bit different.

This past week, I had a tough conversation about potty training that put me in a funk about the entire process. Mia has been struggling to go for other people besides me and her nanny. And the discussion of “Is Mia really potty trained?” came up. Is Mia really potty trained?

I started the process of training Mia a little over a year ago. It took about ten days for her to figure out what I wanted her to do when she sat down. And she pretty much immediately made the connection that she should hold it between those times. But she’s not to a point where she will go on her own. And she doesn’t give me an indication that she has to go. So every 2 hours, I just take Mia to the bathroom. She has about 1-2 accidents a month.

But is Mia potty trained? Well, sort of. Yes, Mia uses the bathroom and she’s in underwear all day. Mia only wears pull-ups at night. No, Mia is not done potty training.
So has it been a success or a failure? Should I quit and start over (whatever that means…)? Have I made some horrible mistake? Should I hire an expert? How do I make this happen?

Mia pulled up on the furniture when she was one year old. About 2 months later she started cruising. But it took until she was a little more than 2 for her to start walking.

And we tried everything (just ask her physical therapist). We tried holding an iPad and trying to trick her into standing. We tried letting go of hands while walking. Her dad and I sat across from each other and had her walk between us. You name it, we tried it.

How did I make her walk?

And that’s the thing. I didn’t. I was literally sitting in the dining room one day, and Mia walked in with her walker. Then she stopped, turned around, and walked into the living room, leaving the walker behind. And that was that.

I can’t make Mia do anything. She has proven over and over that she will do it, but I have no control over how or when. I can encourage, I can cheer, and I can show her what to do. But Mia will do things when she is good and ready.

So how do I make Mia use the potty on her own? Well…I’m taking her to the potty and she’s going. I suspect that one day, she’ll decide she’s ready to do it on her own, and then that will be that.

But has this year been a success? I guess that depends on your definition.

See, for me it’s not about whether or not she’s done. So what if I have to remember to take her to the bathroom? The confidence she has gained from not being a “baby” anymore is palpable. Actually, she won’t even let me use up the last few diapers I have left for bedtime. She won’t wear them. She insists on stepping into the pull ups. It wasn’t just about the convenience of not having diapers. It was about what not having to wear diapers meant for her. That she’s big.

And now she’s going to kindergarten, and learning her letters and numbers. The fact that sight words were added to her IEP for next year. Reading. Mia is going to be reading.

It’s easy to feel frustrated when you are working toward one goal for a year and feeling like you’ll never get there. It’s easy to lose faith in the process.

And sometimes I do lose faith in the process, faith in my abilities, faith in whether or not I can handle raising her. I lose faith. I do. I feel frustrated and lost.

But Mia always reminds me not to lose faith in her.

Because guess what? It’s not about me.

So is Mia potty trained?

She’s working on it. And she’ll be done when she’s good and ready.

And for me? That’s success.

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World Down Syndrome Day – My lessons.

Tomorrow is World Down Syndrome Day. And I saw that another mom wrote a blog that listed what she has learned since having a daughter with Down syndrome. I’ll be honest, I didn’t read it. Partly because I thought, “What a good idea. Maybe I’ll do the same.” And I didn’t want her list to change mine.

Because, guys, I’ve learned a lot. And it may not be what you expect. Some people told me I’d learn about living life at a slower pace. Some people said I’d learn to appreciate the little things. Those sounded nice, right? But it’s not exactly what I learned. So here goes.

1.
I’ve learned that despite people’s best intentions, their most enlightened ideals, or their most progressive understanding of human rights, that they will inevitably have an incredibly difficult time looking past my daughter’s disability and seeing her. And even as her mother, I have a hard time seeing past it too. Life is strange that way. We seem programmed to categorize and differentiate. To see how another person is different and not the same.

I’ve learned so much about how I see the world. The good and the bad. I’ve learned that prejudices run deep and overcoming them is difficult, but possible, a daily process, and absolutely necessary.

2.
We celebrate the little victories. That is certain. But I’ve learned that there are far more victories than I’d expected. I’ve learned that the biggest barrier to her victories is not Down syndrome, but my own low expectations. I’ve learned when to push and when to back off. I’ve learned that she will get there at her own pace, but that doesn’t mean I don’t encourage, cheer, and push.

Because she is soaking it all in. She knows what’s expected and what she needs to do. And instead of saying, “I wish you would do this,” I say, “I know you can do this.” Because she can. And she will.

3.
I’ve learned that she has an incredible cheering section and a great team. But that doesn’t mean I don’t ask questions. I’ve learned that I’m her advocate. I’ve learned that advocacy is more than speaking. It’s more than educating. It’s fighting for what my daughter needs. I’ve learned that when it comes to my daughter, quitting is not an option for me. I think all of us moms find that mama bear inside. And we don’t know how strong and ferocious we can be until our child isn’t getting what they need.

I’ve learned that for a painfully awkward and introverted person inside and sometimes out, that when it comes to my kid, I will stand my ground, speak with conviction, and not back down.

4.
But in the same respect, I’ve learned I can’t do it all. I’ve learned that caregiver depression is a real thing. I’ve learned that while fighting for what my daughter needs, I have to also fight for my own needs. I’ve learned that the days are long the road stretches to the horizon, and that I have to take care of myself and her. That we are in this together – Mia, Fynn, and me. And that I’m no good to them burnt out. That recharging is not a luxury. It’s a necessity. Because there will always be one more battle. One more milestone. One more sleepless night.

I’ve learned that sometimes, I have to ask for help.

5.
I have learned that there will be comparisons. I have learned that friends look at Down syndrome and think, “But her problems are so much bigger.” And to all of my friends that say that or tell me their problems with a caveat, please stop. I don’t think of it that way. Life is hard, my friends. It is. Everyone has their stuff. Their thing. And you’d be surprised at what my “thing” is. It’s not Down syndrome.

Life is hard. There’s no way around it. I’ve learned that.

6.
I’ve learned that life is better with Mia. Over the years, people have told me that they couldn’t do it. That I’m so strong.

I’m not strong. I didn’t know that I could do it. I still don’t know all the time. I still have my doubts that I’m strong enough.

This quote always rings true to me: “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage,” Lao Tzu.

Because on those days that I feel tired and burnt out and exhausted, I just remember, it’s Mia. It’s not Down syndrome. It’s not disability. It’s Mia and we belong to each other. That this is how it was supposed to be and it’s just us.

And loving her is the easiest thing I’ve ever done in my life.

I can’t wait for more lessons.

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The Mommy.

It occurred to me a week ago. When I was sitting in Mia’s classroom, participating in her Star Day, and I looked at the clock. The teacher asked, “Do you have to go soon?” And I smiled politely, “Oh, no, I’m good.” But I really wasn’t. I absolutely needed to go. I had a ton of things to accomplish that day, and it had been “a week”. But I also wanted to be there for Mia and enthusiastically participate. But I’m only one person.

Do you remember the television show “Mad About You”? There’s this great moment after Helen Hunt gets pregnant that she’s rationalizing to herself that Paul Reiser’s character will be able to do so much of the work, too. And they will be in this together, and he looks at her and says something like, “I can help, but you’re the mommy.” And she gets this stunned look on her face and says, “I’m the mommy. Oh my god. I’m the MOMMY.”

I don’t think I realized how poignant that scene was until I became a mom. I’m the MOMMY.

And bam. There it is. Mental load. I know you’ve all heard the term, but it’s completely true. And mental load is rough.

Being a single mom only exacerbates the problem. And no matter how involved and engaged your co-parent is, odds are Mommy is buying the Valentine’s for the kids’ parties and keeping track of the calendar. Mommy knows what “Expert Day at school” is because Mommy is reading every email from school and taking mental notes about where she needs to be. Mommy is figuring out summer daycare and birthday parties. Mommy is figuring out after school activities and swim lessons.

And then add on a child with a disability. Just this week I felt I had neglected my 2nd job. When I realized that her teachers didn’t know that Mia knew her letters. And I sat there looking at her report card in disbelief. “Mia doesn’t know her letters? What?” And I realized that Mommy hadn’t been keeping as close an eye on her as she should have. Of course, Mia does know a vast majority of her letters very well. But that sick feeling in my stomach of failure is still very much there. Mommy wasn’t paying enough attention.
And I could delegate. I could send a list to their dad. But for a number of reasons, I have the kids the majority of the time. So, really I’d have to schedule the doctor appointments and school things myself anyways.

So I guess the question is “How do I unload?” I have two weekends a month when I don’t have the kids. I know people tell me to enjoy the break. But it’s not really a break. It’s more a “recovery” process. Cleaning the house, grocery shopping, etc. And sure, I do some fun things, but it’s usually punctuated with a mountain of laundry.
It’s a challenge you guys. And I know every mom understands.

And then add on to that the guilt that you’re house isn’t as clean as it should be. The social media comparison to that other mom that just seems to have her shit together.
I don’t have a solution. Because I’m the MOMMY.

I guess this is why us Mommies have to stick together. Encourage each other. Admit that we don’t have our shit together. Give each other an emotional high five.

Because we’re the Mommy. And it’s a badass gig.

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Not a joke.

I posted about this earlier this week. The comedy special where the comedian made a joke about people with Down syndrome. And I’ve read the responses by the comedian’s supporters.

Remember how I’ve talked about taking the “red pill”? About learning things that I didn’t know that I really needed to know? For five years, my eyes have been truly opened to the just purely discriminatory treatment of people with disabilities. And how horrendous that it has actually been for people with Down syndrome. The “r” word? Yes, it’s hurtful. But it’s a red herring. It’s a distraction. It’s a thing that people can cling onto. “Don’t be so sensitive.” “It’s just a word.”

There are still countries in our world where children with Down syndrome are immediately sent to institutions after they are born. There are countries in our world where toddlers are tied to a bed because it’s easier to “control the children” with developmental disabilities. There are countries today who take these same children, when they turn four years old, and send them to adult institutions. Imagine little Mia in an adult institution. At her age, she would have already spent a year there. There are countries in our world that still just let children with cardiac conditions go untreated and die.

It wasn’t all that many years ago in the United States when doctors wouldn’t bother treating the cardiac, pulmonary, gastric, and other conditions that go along with Down syndrome, and they let them languish in institutions and then die at young ages. Fourteen was a good life expectancy.

I watched a special once about a deaf woman with Down syndrome who was sent to a mental institution because her pediatrician told her parents it was the best place for her. So at seven years old, they left her there. She was ripped from the only home she had ever known and was sent to live away from her family on a doctor’s advice. There were notes from that institution that when she asked for a box of crayons, she was told that she was “too retarded to color.” Her twin sister ended up saving her from the institution as an adult after her parents passed away, brought her to California, where she was finally loved and cared for. She became an outsider artist, creating the most beautiful fabric sculptures. But those sculptures still captured a woman traumatized by years in confinement.

A few years ago, a man with Down syndrome was suffocated by off duty police because he “resisted arrest.” Meaning, he didn’t understand their command for him to leave a movie theater because he was following the directive of his caregiver to stay in his seat and wait for her to come back. He died screaming for his mother. He died over a $12 movie ticket because the police weren’t trained to handle developmental disabilities.

It wasn’t that long ago that Mia wouldn’t have been allowed in a typical classroom, where she is thriving today. I would have been told that it wouldn’t be worth teaching her because she would never learn. Karen Gaffney (a speaker and self-advocate who swam a relay in the English Channel) told a story about how her parents were told by a doctor that she would never learn to walk or talk. And thankfully, her parents didn’t believe it.

What we have done as a society to people with Down syndrome is criminal. It truly is. The harm we have inflicted on a group of people because they happen to have an extra chromosome has been catastrophic. And the fact is that it’s still happening. There are still places where these horrors still exist. Where children are told they are too “retarded” to be a member of society.

So, yeah, I guess I’m sensitive. Because my daughter deserves better than that. Because Mia should be able to walk out of her house without worrying if someone is going to call her a name just because she has slanted eyes and a flat nasal bridge. That people will determine her value because of her chromosome makeup. She deserves to be heard. To be appreciated. To be valued. And I will make sure of that, don’t you worry. But that’s not enough.

Because I want her to live in a world where people fight less for the right to use a derogatory word and fight more for people to be loved.

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Not rainbows and unicorns.

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” ― Maya Angelou

Every once in a while, someone asks me to talk to a new mom with a Down syndrome diagnosis. Sometimes it’s a doctor, sometimes a friend, sometimes a therapist. I’ll be honest, before I say yes, I have to consider, “What stage are they in?” And “What stage am I in?” There are stages, you see. And sometimes I’m not sure if I’ll help or hurt.

Because Down syndrome isn’t always rainbows and unicorns. And sometimes you just don’t feel all that thankful.

Sometimes, you’re sad. Or mad. Or defeated. Or hopeless.

I had one of those weeks. Those weeks when the gap between Mia and the typically developing kids in her class felt like a chasm. And no matter how great her teachers tell me she’s doing, I think, “Compared to what?”

One of those weeks when I’ve been working on a skill with her for months, and I just think she’ll never get it.

One of those weeks when I just want a normal family. And a normal relationship with my daughter. When I just want her to tell me about her day. When I don’t want to hear about it from a piece of paper in her folder.

One of those weeks when I just stop telling friends how Mia is doing because they say something like, “Well, typical kids do that, too.” And I look over at my daughter and realize they don’t really understand.

One of those weeks when I’m afraid to say what I feel because people will think I don’t love her.

Because I do.

There are stages, you see.

Because it isn’t easy. And I think that’s what I really want to tell a new mom with a diagnosis. There are weeks when you feel like your kid could conquer the world. When you see what true human potential looks like.

Then there are weeks when you realize what one little extra chromosome can do to a person. When you see the differences and they hurt so damn bad. When you wish everything were different.

And it’s all okay. Because what you are doing is not easy. It’s actually really, really hard.

I hate the statement, “Special kids are given to special people.” Because it’s so not true. Special kids are given to plain old ordinary people, and then it’s not their kid’s potential they have to worry about, it’s their own.

And sometimes you just feel like a big failure. And sometimes you feel like you were blessed with the most wonderful human being on the planet. And your own potential for love is limitless.

Because there are stages.

Here’s to a New Year and new stages. Limitless potential and epic failures. And everything in between.

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Change.

I held on way too long. I knew it wasn’t a great idea. I knew that eventually I’d have to stop. But I loved the ritual, the closeness, the quietness of it. But Saturday, it just hit me. It was time.

I stopped rocking Mia to sleep.

She didn’t always need it. She could fall asleep on her own just fine. But she still fit so snugly on my lap, and it was 20 minutes of quiet closeness with my wiggly, busy 5-year-old.

But it had to end. She’s not a baby anymore.

But my heart.

There are a lot of really difficult things about parenthood, but I think the worst is the endings. Time just keeps ticking along, and I’m so proud of them and heartbroken all at the same time. Like one last time after another.

Tonight it hit Mia, too. She realized that we weren’t going to be rocking anymore. And her lip quivered, and I gave her a hug and said, “Change is hard, I know.”
And then from behind me, “Change is a part of life, Mia,” said brave little guy who has seen more change than an 8-year-old should.

I underestimate my kids a lot. And I don’t think it’s because I don’t trust them or I don’t think they can do it. I think it’s just because watching them become more and more independent is so bitter sweet. I want them to be independent, but I still want them to be my babies at the same time. I underestimate how much they understand, how resilient they are, and how strong they are.

I’ve seen so many big changes in Mia over the school year already. Participating in class, making new friends, using more words. She’s growing up.

And I’ve seen so many changes in Fynn. He’s adapting and growing, loving learning and reading, and helping around the house. He’s growing up.

All three of us snuggled in bed tonight reading stories. Mia was still getting used this change, and she would sniff a little, and start to tear up, and Fynn would hug her and make her laugh. And then I said good night and kissed her on the cheek and Fynn kissed her other cheek.

Change is a part of life.

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The Red Pill, continued.

Neo, sooner or later you’re going to realize just as I did that there’s a difference between knowing the path and walking the path. – Morpheus, The Matrix

Almost three years ago, I wrote a blog called The Red Pill. I answered the question, “If you could take away Mia’s Down syndrome, would you?” My answer was no.

In three years, a lot has changed in my family. I read my old blogs and think, “You should have known the tsunami was coming.” But I didn’t, and that’s okay. And in this particular blog, I wrote, “No one ever promised an easy life.”

In two days, Mia will be five years old. Since I wrote The Red Pill, Mia has been through preschool, daycare, and has now started K4. Three IEPs and therapists. Three different teachers and then daycare teachers. Two echocardiograms, a set of orthotics, blood draws, endocrinologists, a night in the emergency room because she wasn’t able to breathe during an episode of croup.

So now that I’ve walked down the path for a few more years, having to let go to different people, being immersed in a new reality both at home and school, and starting to really see what all of this means for the future. Would I take it away?

Disability is terribly unfair. It’s incredibly difficult to watch Mia struggle. In fact it just sucks. It sucks. The fact that Mia has a disability that is all encompassing sucks. There is no sugar coating it. I can wrap it in rainbows and unicorns, but it doesn’t suck any less.

There are experiences that she may never have because of her disability. College, marriage, motherhood. All of it was written before she was born. A mistake in cell division. One little extra chromosome.

Disability is terribly unfair.

But would I take it away?

I wish I didn’t have to fight so hard. I wish I didn’t have to be constantly vigilant. I wish I didn’t have to worry about her being accepted. I wish she didn’t have a heart defect. I wish that she would start talking more. I wish she wouldn’t have to struggle.

But here’s the thing. Wishing away Down syndrome is wishing away Mia.

As I said in that other blog, Mia isn’t sick. She didn’t develop a disability over time. The very blueprint that makes her who she is has a tiny extra chromosome.

Who would Mia be without Down syndrome? While her disability doesn’t define her, it’s part of her.

From her sandal toes, to her flat nasal bridge, to her trans-palmer crease, to her slanted eyes…to her stubbornness, kindness, independence, and spunkiness. Down syndrome is part of every bit of who she is. At the same time it’s not who she is. She’s a little paradox. And that’s what makes her so … her.

Because life is better with her, exactly as she is.

So once again, even three years later, I’ll take the red pill.

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A birth story. Almost 5 years later.

“Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.”
― Leo Tolstoy

It’s Down Syndrome Awareness Month and I realized the other day that I never did write down Mia’s birth story. I did write a sort of blog announcement, but that was public relations Erin talking. The face I put on like a shield. It was a cozy place to retreat to at the time. So here it is.

Mia’s birth story starts quite a while before she was actually born. It started during my 20-week ultrasound. I wasn’t working at the time, so finding a babysitter was a problem, and we brought our squirmy 2 (almost 3)-year-old along. Our ultrasound tech was very professional, pointed out body parts and a healthy heart beat. She told us we were having a girl, and we smiled and giggled because we got to have one of each. But her face darkened. I distinctly remember that. She had a sort of grimace on her face, smiled a tight smile, and said, “[The perninatologist] will be in shortly.”

He came in briskly, sat down in the chair, and got right to work looking again. I knew something was wrong. Something felt different about this time around. And then he sighed, looked up from the screen, and said, “What do you know about Down syndrome?” I remember describing it once as someone pushing all of the air out of my chest and then sitting on it. I don’t remember a lot about what happened next. He talked about soft markers, and the only way of knowing would be an amnio, and that termination is an option, but only for 4 more weeks. It went by in a blur. I tried to get out of that conversation. I couldn’t process it. I remember asking if I could talk to my OB. I just wanted to run away. And he kept telling me it wasn’t necessary, and what she said didn’t matter. I finally said I needed to think. Nate spoke up and said we didn’t want to terminate so why have an amnio? And then he said, “Good luck.”

And then I waited it out. The early blood test was not available. I was 9 months too early for that. Prenatal counseling was non-existent. I was offered nothing. No one offered someone for me to talk to (aside from my friends), no one gave me information. No one said anything at all, except, “Well, we’ll find out when she’s born.”

It was 5 months of pure torture. Grief, hope, despair. You name it, I felt it. Instead of happily buying baby girl clothes, I would just think these dark thoughts like, “Should I name her? What if she dies?” While Nate traveled, I’d sit in our apartment researching soft markers and wondering if she’d be one of the 96% of kids who have this specific soft marker and are born with a typical set of chromosomes.

And then in my desperate searching, I ran across two websites – two mommy blogs that turned the tide a little bit – Enjoying the Small Things and A Perfect Lily. I remember the first picture I saw. The most beautiful little blonde girl helping her dad wash a car. And in my head, the world was an entirely different place. If you ever wonder why I post about Mia and write about her, it’s because that moment changed my entire perspective. Sure I was scared out of my mind, but that photo made me believe, for a moment, that life might be beautiful after all. And I think that maybe someday, someone will run across my blog or my photos of Mia doing typical kid things and drag themselves out of that dark place, too.

Even though I comforted myself with these families living typical lives, I was still holding out this hope that Mia would be born without Down syndrome.

She made me wait 5 long days past her due date. She was actually due on Halloween, but I went into labor on Guy Fawkes/Bonfire Day. It was more fitting anyways. Remember, remember, the 5th of November.

Honestly, the actual birth was easy. Easier than Fynn, even though she was a big baby, just like Fynn.

They put her on my chest and I didn’t see it. I saw her blonde hair and blonde eyebrows. I picked up a hand and looked at it, and no transverse palmar crease – because I remembered that was a thing. (It was on the other hand.) I thought, “Whew, she doesn’t have it.” And for 30 minutes, Mia didn’t have Down syndrome.

Then the nurse picked her up in a strange way, looked into her face, and turned to me, “I’m going to call a NICU nurse down.” And then the other nurse arrived and the two nurses argued about whether or not they thought Mia had Down syndrome. Then the NICU nurse walked over to us and said, “You knew ahead of time, so this isn’t a surprise, but I think your daughter has Down syndrome.” I said, “Oh, well, should we just order the chromosome analysis?”

The nurse shrugged, said, “Well, I’m telling you she has Down syndrome.” And then she left.

And then we went to a normal room. The nurse, in a hushed voice, told the nurse on duty that “This is Mia; she has Down syndrome.”

The rest of the day is a little foggy. I remember being fine. I was fine. Mia didn’t go to the NICU that day. She stayed in the room with me. I sort of kept wondering if she was going to die. Like, what happens now? No doctor came to talk to me. No one examined her. I kept wondering if I should say something. But I didn’t know at the time that I needed to take on a different role. I wasn’t just a mom anymore. I was an advocate.

But I was completely fine. I was FINE. I do remember saying that a lot.

Until about 12:30 AM. Nate had gone to get Fynn and take him home to sleep. I put Mia in the bassinet, walked into the bathroom, looked in the mirror, and it was like 5 months of grief came out all at once. I can’t tell you how long I cried. So much that my eyes were almost swollen shut.

I didn’t want anyone to know I was sad. It’s the other thing people don’t prepare you for – the shame in feeling a sense of grief over your living child. I kept all the lights off in my room and wrapped the ice from my water cup in a paper towel and put it on my eyes to reduce the swelling so the nurses wouldn’t know. Silly right?

The rest of the hospital stay included being yelled at by a doctor because I wanted to breastfeed and I didn’t understand this new polycythemia diagnosis. We found out about her heart defect. I had a group of wonderful nurses and lactation consultants who took my lead (the happy face I put on so they would all start talking like normal people) and started encouraging me instead of avoiding me. The polycythemia landed her in the NICU because her blood was turning to sludge. And then…the rest.

I’ve hesitated for a long time in writing this birth story because it’s not pretty. It was not a week of unicorns and rainbows and support. It was raw and wrong. It was full of misunderstandings and pain.

But here it is. And this is why I advocate for more information. This is why I post about Mia. This is why I say yes to anyone who wants to “send someone with a diagnosis my way.” Because this birth story is not Mia’s story. It’s just the beginning, and the beginning was hard.

But then Mia came home. That’s her real birth story. When the little girl with Down syndrome became just a little girl. But you all know that story already.

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