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My child’s disability does not define him—or me

Living with disabilities can be hard, but having a disability isn’t the end of the world. 

My child’s disability does not define him—or me

A few years ago a friend sent me a frantic message on Facebook. She was concerned about her child’s physical development, and she wanted to run a few things by me—her chief concern was that her then-toddler daughter had started walking on her toes.


My son has mild cerebral palsy, and for reasons I can’t entirely fathom, sometimes people I know assume this means I know Everything There Is To Know About Cerebral Palsy, and they’ll occasionally ask me, instead of their child’s pediatrician, about medical conditions.

Spoiler alert: CP is a huge spectrum, there’s no way I know everything, and you should always just ask your kid’s doctor.

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This friend had recently suffered her second (or third) miscarriage, and I assumed she was in a delicate space. So when she followed up my reassurances that simply walking on your toes doesn’t mean you have cerebral palsy by writing something like, “Oh good. That’s what my husband said, but I was convinced she was dying,” I tried to be compassionate.

In fact, I tried extremely hard to summon every bit of compassion I have in me so I could resist the urge to launch into a paragraphs-long response to her seemingly innocuous, actually offensive statement.

I think I wrote something back along the lines of, “Nope! She’s probably just fine, but ask her doctor if you’re worried,” and closed out the message.

Clearly this has stuck with me.

I’m sure that’s because I never circled back to tell her how the question made me feel.

At the time, I didn’t want her to feel bad or to overcompensate for being a jerk; I just wanted her to… stop asking me questions immediately. But the result of trying to be careful about her feelings is that I haven’t stopped thinking about this one Facebook message. Like, ever.

My son’s cerebral palsy is mild. This doesn’t mean it’s not hard because it is: he faces daily challenges, and being a little boy who has CP in a world that’s filled with ripped, able-bodied superheroes as inspiration isn’t easy on a child’s confidence or the paternal soul.

He wears AFOs (braces) on his legs for a few hours during the day and again the entire time he’s sleeping. His muscles get tighter when it’s cold outside, and we have to ramp up our at-home stretches and physical therapy sessions at the hospital to combat it.

Every time he has a growth spurt it’s like we’re starting over again, because his legs and hips constrict and his ankles aren’t as loose as they should be. But our journey is different compared to the journey other CP families are on, and we know it.

We spend a lot of time being thankful that our son is able to do everything he wants to do. Sure, he might need to do it a little bit differently, but he can go hiking, ride a bike, do yoga. He has full cognitive function and reads like a champion. He’s a smart, inquisitive, awesome kid.

One thing he isn’t is dying or cursed with an affliction. He’s not an undesired child. His life is not a dark one, and having CP isn’t the worst sentence he could have received.

I know no one goes into parenthood hoping their child will have a lifelong medical condition (and my son actually has three), but we didn’t greet his diagnosis with fear and doom, and his life is lived to the maximum because we believe in celebrating where you are while you’re there, for as long as you can.

So here’s what I want you to know about disabilities: this world is a spectrum.

Living with disabilities can be hard, but having a disability isn’t the end of the world, and it doesn’t have to mean someone is dying. In fact, it oftentimes doesn’t.

Sometimes one disability is harder than the other, but consider this: there are a lot of people in the world just like my son. Kids who love Captain America and “Star Wars,” teens who spend too much time on their phones and can’t wait to live their own lives, and adults who are completely independent and wildly awesome.

Implying that their lives are tragic or that they’re experiencing a worse-case scenario takes those glorious, beautiful lives and ignores all the light these people live with, despite their challenges.

It ignores that these kids, these teens, these adults, these humans are people just like you, just like your kids. It ignores what is good about their lives, and instead emphasizes what is perceived to be bad.

This year many of us have a tighter budget than usual given (looks around) everything that has happened. Coupled with the uncertainty of what Halloween might look like, many of us are reluctant to spend money on brand new costumes that our kids will outgrow by next year. I get it. But I also know that many, like me, love Halloween so much. I thought about skipping the celebration this year, but that just feels like too big of a disappointment in an already disappointing year.

That's why I started looking into alternative costumes—something my kids will be able to wear once the clock hits November, and maybe even hand down to siblings and cousins in the coming years. At the same time, I'm not a DIY person, so I wanted outfits that didn't require any sewing or hot glue. Last year I attempted using one to build my son's Care Bear costume, and of course, I burnt my hand.

So with some creativity (and the brainpower of my colleagues), we came up with these costumes that are both fun and practical, made with items that your children will be able to (and want to!) wear year around:

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Time-saving formula tips our editors swear by

Less time making bottles, more time snuggling.

As a new parent, it can feel like feeding your baby is a full-time job—with a very demanding nightshift. Add in the additional steps it takes to prepare a bottle of formula and, well… we don't blame you if you're eager to save some time when you can. After all, that means more time for snuggling your baby or practicing your own well-deserved self-care.

Here's the upside: Many, many formula-feeding mamas before you have experienced the same thing, and they've developed some excellent tricks that can help you mix up a bottle in record time. Here are the best time-saving formula tips from editors here at Motherly.

1. Use room temperature water

The top suggestion that came up time and time again was to introduce bottles with room temperature water from the beginning. That way, you can make a bottle whenever you need it without worrying about warming up water—which is a total lifesaver when you have to make a bottle on the go or in the middle of the night.

2. Buy online to save shopping time

You'll need a lot of formula throughout the first year and beyond—so finding a brand like Comforts, which offers high-quality infant formula at lower prices, will help you save a substantial amount of money. Not to mention, you can order online or find the formula on shelves during your standard shopping trip—and that'll save you so much time and effort as well.

3. Pre-measure nighttime bottles

The middle of the night is the last time you'll want to spend precious minutes mixing up a bottle. Instead, our editors suggest measuring out the correct amount of powder formula into a bottle and putting the necessary portion of water on your bedside table. That way, all you have to do is roll over and combine the water and formula in the bottle before feeding your baby. Sounds so much better than hiking all the way to the kitchen and back at 3 am, right?

4. Divide serving sizes for outings

Before leaving the house with your baby, divvy up any portions of formula and water that you may need during your outing. Then, when your baby is hungry, just combine the pre-measured water and powder serving in the bottle. Our editors confirm this is much easier than trying to portion out the right amount of water or formula while riding in the car.

5. Memorize the mental math

Soon enough, you'll be able to prepare a bottle in your sleep. But, especially in the beginning or when increasing your baby's serving, the mental math can take a bit of time. If #mombrain makes it tough to commit the measurements to memory, write up a cheat sheet for yourself or anyone else who will prepare your baby's bottle.

6. Warm up chilled formula with water

If you're the savvy kind of mom who prepares and refrigerates bottles for the day in advance, you'll probably want to bring it up to room temperature before serving. Rather than purchase a bottle warmer, our editors say the old-fashioned method works incredibly well: Just plunge the sealed bottle in a bowl of warm water for a few minutes and—voila!—it's ready to serve.



Another great tip? Shop the Comforts line on Comfortsforbaby.com to find premium baby products for a fraction of competitors' prices. Or, follow @comfortsforbaby for more information!

This article was sponsored by The Kroger Co. Thank you for supporting the brands that support Motherly and mamas.

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My 3-year-old is eating peanut butter toast with banana for breakfast (his request), and we are officially running late for preschool. We need to get in the car soon if we want to miss the morning traffic, but he has decided that he no longer wants the food that he begged for two minutes earlier. What started off as a relatively calm breakfast has turned into a battle of wills.

"You're going to be hungry," I say, realizing immediately that he could care less. I can feel my frustration rising, and even though I'm trying to stay calm, I'm getting snappy and irritable. In hindsight, I can see so many opportunities that fell through the cracks to salvage this morning, but at the moment… there was nothing.

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