Let them ask.

Mia and Fynn are on their way back to school on Tuesday. Summer flew by. I’m sure you all feel it. Back to school. Back to packing lunches. Back to activities. And back to worrying if Mia will make friends.

More than once…well lots of times…my friends have expressed to me a worry that their kids might say something uncomfortable around Mia. They might wonder why she doesn’t talk yet. Why she still might need a stroller at times. Just in general, “Why is she different?”

First, I’d like to assure anyone who has worried that their kids might say something inappropriate that I don’t even think about it. It’s not something I worry about, actually. Sure, there are times when a comment stings a bit. But those comments usually come from adults not kids.

Here’s why. Letting your child play with Mia or inviting her to play dates or letting your kids ask questions breaks down that big giant wall between typical and different. Kids fear what they don’t know. They fear different, until they realize that different isn’t all that different from them.

Each week, for writer’s workshop, I send in a photo of what Mia did that weekend. One time it was going to Discovery World. One time the zoo. After Easter, I sent in a photo of Mia dying eggs. What I found out later was that her teachers were not only using them for Mia’s writing projects, they were using them to show the other students how much like them Mia really was. “Mia dyed eggs last weekend, see? How many of you dyed eggs last weekend?” You’re more alike than different.

And this is why inclusion is so important for everyone – Mia and the other students. When you learn about people with disabilities from knowing them, disability becomes normal. It becomes a part of the conversation, and it takes away the stigma.

I learned this lesson before Mia went to school from an incredibly gracious teacher in a check-out line at Target. Fynn has always been a naturally curious kid who genuinely appreciates other people for their differences. As his K5 teacher said, “He is one inclusive little guy.” We were standing behind a woman who had dwarfism. And Fynn looked at her and said, “Oh my, you are very small.” I wanted to, of course, disappear into the floor, and I scolded Fynn a bit for being so brash. Mia was in the cart, and I was ashamed I hadn’t taught my own son to be polite to people with disabilities. She turned to me and said, “Let him ask me questions. I’m a teacher, and I’m used to children’s curiosity. Let him ask.”

Let them ask. And if you’re too nervous to ask a stranger. You can ask me. I promise I won’t be offended.

When you send your kids to school, please talk to them about differences. Talk about the fact that people have all sorts of different abilities. Talk about helping other students but not doing the work for them. Talk about the fact that everyone has inherent value.

And let them ask. It’s the only way you get to know someone.

Happy new school year everyone!

Posted in Uncategorized | Comments Off on Let them ask.

Four paragraphs.

“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.” ― William Shakespeare, Macbeth

My mother passed away on June 19 after a shockingly short battle with Alzheimer’s. I started noticing memory problems maybe 12 months ago? But they were minor. A few stories told more than once during a weekend. Then decline on fast forward. And here we are.

There have been a lot of traumatic things about the last six years. If you’ve been following along, I think I am living in traumatic. Surprise! Your daughter has Down syndrome. Surprise! You’re getting a divorce. Surprise! Your mom is dying.

But the most traumatic thing was writing my mom’s obituary.

I’m the writer, right? Heck, I write and edit bios for a living. It should have been easy.

And then I boiled her life down to four paragraphs. Four. Her entire life.

Because how do you describe someone who shaped your entire existence? Who sometimes when you don’t expect it, you find yourself mimicking. The person who comforted you and loved you unconditionally. How do you describe that person? The person who saw me at my worst and most vulnerable and endured my hurt and anger at times and still kept coming back.

Who kept telling me I was still loveable even when I didn’t believe it.

Four paragraphs? I could write a novel about her. A novel about being content with who you are and where you are. About blooming where you’re planted. About being happy to sit with a book and not feel constant dissatisfaction. About finding your passion in a classroom surrounded by 6 year olds.

About loving your people.

I hated having to do it. To take a life and remove the nuances and happiness and even the broken parts, and replace them with college graduations and careers.

And I thought about my own obituary. When someone has to write it, will they boil it down to my “accomplishments?” And what will those be? I graduated from college?

Because what I want it to say is that I made mistakes. So many mistakes, but I learned from them. That my children taught me that imperfect beats perfect every time. That I survived a broken, shattered heart. That maybe after that broken heart, I was able to forgive.

That even a broken life is a life well lived.

My dad, the kids, and I are moving forward as best we can, caring for each other and remembering the good parts and the broken parts too. Until we meet again.

Posted in Uncategorized | Comments Off on Four paragraphs.

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!

Posted in Uncategorized | Comments Off on Expectations.

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.

Posted in Uncategorized | Comments Off on Three buses.

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.

Posted in Uncategorized | Comments Off on Success

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.

Posted in Uncategorized | Comments Off on World Down Syndrome Day – My lessons.

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.

Posted in Uncategorized | Comments Off on The Mommy.

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.

Posted in Uncategorized | Comments Off on Not a joke.

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.

Posted in Uncategorized | Comments Off on Not rainbows and unicorns.

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.

Posted in Uncategorized | Comments Off on Change.