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402 days. 402 (plus or minus… mostly minus) posts.

Category: Family

Day 880: Swings, Songs and Advice for New Moms

Almost three years ago, one of my favorite friends and mentors had a baby boy. His name is Colin, and he has always been one cool cat, even at seven months old when I first blogged about him.

Because it’s been a few years (no idea how that happened), I asked Colleen if I could interview her again – this time, about about motherhood, wifehood, babyhood, toddlerhood, and what she would say to a new mother who receives the same diagnosis for their baby that was given to Colin.

Colin

Colin is a measured performer and a quick study. He can figure out what makes you laugh and then milk the situation before you even know what’s going on. I asked Colleen what Colin’s personality is developing into, and what she sees in Colin of herself and her husband, Chris.

“Reading and entertaining rank high for Colin. Book was his first word. I think he would spend the entire afternoon being read to, if he could. And while you are reading to him, he will inevitably make a funny face, snort or try to get you to smile – that’s the entertainer in him.

He’s a huge fan of Louis Armstrong. And he loves to swing, be surprised,” [Interjection from me: it’s true – he loves to be surprised. Whereas I’d probably cry and pee my pants a little, he just laughs.], “sing along to any number of songs, and play ball. He throws better than I do.

Colin Swinging Down Syndrome

Case in point.

He has Chris’ sense of perfection. Before he was walking, he would practice pulling himself up in hiding before he did it in person. We would watch him on the baby monitor. He has the persistence to keep trying something over and over until he is happy with it.”

As a nearly three-year-old, Colin walks, runs and takes exuberant leaps off one of the chairs in the living room (which has since been turned around to face the wall as a preventative measure). He’s also one of about 400,000 people in the U.S. living with Down Syndrome.

Advice

The original diagnosis was an admittedly scary and difficult one for Chris and Colleen. They received it moments after Colin was born, and they weren’t sure how to react. True to form, they made it through the initial tumbling and came out smiling on the other end.

“I knew Chris would be a good dad, but there is a whole other level of falling in love with your partner when you see them as a loving parent. I couldn’t really understand what that looked like until I saw it firsthand.”

Knowing what she and Chris know now, I asked Colleen what she would say to new parents of a baby with Down Syndrome. 

“Recently I read something that really rings true, so I’m going to steal the thought. If you were to go to a new parent and tell them all the things that would go wrong in their child’s life – like, when they are six months old they’ll get really sick and you will be up with them for nights on end trying to figure out what’s wrong. Or at seven, they’ll fracture their arm jumping off the bed. Or their best friend won’t be their friend anymore when they’re 11, and it will really hurt their feelings – If you told a new parent all the bad things that would happen in the future, instead of helping them be overjoyed with their new child, they would be scared to death. How can a mom protect her kid from that? But that’s not how it happens for most new mothers, thank God.

We were told (or read on the Internet) all the things that could/might happen to Colin throughout every stage of his life. But the truth is, some might happen and some might not. So I would tell a new parent to throw all the opinions, presumptions and thoughts aside and know that someday very soon, you will not see your child as any different.”

Colin Selfie Down Syndrome

Colin’s first selfie. JK, mom took it.

She also offered some incredibly sage advice to all the new mothers of all the babies, regardless of their situations:

  1. “Go easy on yourself. In the beginning you can become delusional due to lack of sleep. Everyone will say ‘sleep when the baby sleeps.’ If you can do that, great. If not, then do what you can do to relax. I couldn’t sleep when he slept, and I beat myself up for it over and over.
  2. Find a small group of people you trust, who will listen and talk with you. Thankfully, I had a handful of people who would answer the phone or text me back at 3 am. Remember that someday these people are going to need you to return the favor.
  3. If you don’t have a doctor (or occupational therapist or physical therapist) you trust, then get out of your current relationship and find a new one as soon as possible. And don’t be embarrassed to do it.
  4. Take time to allow yourself to welcome this little one into your home. This baby needs the same things from you any other child would need.
  5. Surround yourself with the people who look at your child the way you want the world to look at your child.
  6. Remember that people mean well. Really. I’m sure I said some stupid things to new parents when I didn’t really know what being a new parent meant. (They either forgave me or were so tired they weren’t even listening.) People will have opinions about your child and what you are doing/should be doing/shouldn’t be doing, and so on. That’s ok. They want to support you any way they know how, and they probably have no clue what is going on in your life. So listen, say thank you, and then call someone in the group from #2 to talk about it.
  7. For the proud new mamas of a child with Down Syndrome, you may want to run and hide right now, and it doesn’t feel fair. But once you come to terms with reality, just know that the child in front of you will blow your mind someday soon. Their capacity to reach their goals is the same as any other child when given opportunities and support.
  8. Remember that your child will be their own person even if they share the same diagnosis as someone else. People will make generalizations, like, ‘Oh, those Downs kids are so stubborn/sweet/easy/loving, etc.’ Is that true of Colin? Sure, sometimes. It reminds me of when people used to assume I played basketball because I’m tall. My son and your kid will be different from each other. Will they share similar characteristics? Sure. Do I share similar characteristics with some WNBA players? Sure.”

Right? Sit with that advice from my wise friend and pass it along to the people in your life who need it. And if you want to learn more and support people with Down Syndrome, check out these great organizations:

Ruby’s Rainbow
Changing the Face of Beauty
Think College

Day 394: Things I Learned from My Fish

Brian Boitano passed away yesterday (the fish, not the human). I have yet to confirm his passing with my own eyes, but after responding affirmatively to my are-you-sure-he-isn’t-just-playing-dead questions, his trusted fish sitter has convinced me he is gone.

I feel sad about this. It’s easy for humans to feel attached to warm, furry things that remind us of cute little babies – but we do develop love and affection for the slimier species as well. Brian was a good fish and I miss him.

In his honor, here’s a list of four things I learned from the sometimes aggressive, sometimes lethargic, but always-graceful Brian Boitano.

Everybody feels better around plants. I couldn’t put real plants in Brian’s water (mold and the like – you know how it is), but when I moved his bowl to sit right next to my ivy plant, he recognized the green leaves and snuggled right up to them. Nature soothes, and is an important and often absent element to city life (or giant pickle-jar life, in Brian’s case).

Never underestimate the power of clean water. It probably sounds trite for me to say that watching my fish enjoy his monthly clean-water exchange gave me a higher sense of purpose when it comes to global water issues, but it’s true. Clean water is a precious resource and an absolute necessity that one in nine people do not currently have access to. For information on seven organizations committed to clean water access, water education and/or sustainable water use, check out this list from goodnet.org.

Lying around all the time is never a good thing. If you find yourself too tired to exercise, explore your world or eat, you’re in trouble. Mix it up and adjust your life before it’s too late.

Pink can be pretty and strong at the same time. Brian’s wavy fins would make beautiful sweeps and flourishes around the bowl (before he started lying around all the time), but he could probably bite your finger off if he really tried. He moved his marbles around, no problem. So the next time your little kid wants to wear a pink dress and climb a tree, just think of Brian. It’s totally cool.

YoungBrian(That’s Brian.)

Day 311: To My Sister on Her 19th Day of Marriage

Dear Sister,

Congratulations. Not because you’re married now, and not because you threw an amazing party that your guests begrudgingly left high on laughter and wine and still super sweaty from dancing to What Does the Fox Say.

Congratulations because you’re a thoughtful, intelligent, funny, caring, dedicated, driven and beautiful person. And you married a guy who respects, challenges and loves you. I am proud to call him my brother.

Watching you on your wedding day reminded me how incredibly lucky I am to be your (slightly older and incredibly knowledgable) sister. But mostly your friend. You move through life with a sort of fierce grace that I so admire.

Since I neglected to leave these at the wedding itself, here are my wishes for you and my new little bro:

May you foster a bright light in each other. May you feed the light’s flame should it ever start to dim.

May you help each other grow, with the wisdom that you can grow in different and complementary ways.

May you let the little things go. May you respect the big things.

May you laugh and laugh and laugh.

May you not try to change each other. May you commit to constant personal growth instead.

May you create a safe and welcoming space for each other.

May you support each other’s interests but not each other’s habits.

May you always think quirks are cute.

May you celebrate the beautiful world together. May you cry sometimes, too.

May you pause often and let angry words float quietly away.

May you understand each other’s needs. May you respect that your partner’s needs may be different than yours.

May you work and relax.

And may you always remember that you have two sisters, two brothers and a host of other lovelies who are there for you anytime you need really good advice, dance instruction, booze, a good book, an arm to lean on, pizza, a doctor, perspective, funny jokes and/or an open ear. We’re only an instant phone call or a short plane ride away.

My sister's wedding(Also, thanks for picking out the killer bridesmaid dresses. Love, Ashleigh)

Day 204: He’ll Make it if it Starts with “P”

As part of my job, I occasionally blog for ShopPerk, an app created to help people shop smarter and live better. While the app is in development, the food blog is in full swing.

Earlier this week, I wrote an ode to my Dad and “P” foods. In honor of Father’s Day, it’s reposted below.

(And Dad, thank you for being such a good sport about seeing your private email conversation posted on a public blog. I learned my good-sportedness from you).

He’ll Make it if it Starts With “P”

My dad is really good at making pancakes. Pancakes with bananas, pancakes with blueberries, pancakes with chocolate chips—you get the picture.

pancakes

Actual picture from Betty Crocker.

On the occasions when my mom was out of town, he would expand his repertoire and make my sisters and me other foods starting with “P.” We’d have pizza (pepperoni with green peppers for good measure) peas (of the frozen variety), popcorn (unbuttered but lightly salted) and pancakes for dinner instead of breakfast. Apart from the peas, we loved dad’s cooking.

In preparation for this blog, I emailed him and asked him to remind me what other “P” foods he made us.

Here’s how the exchange went:

Me (10:43 a.m.): Hey Dad, I’m writing a blog for ShopPerk about the different “P” foods you’d make for us when we were kids. Pancakes, pizza, popcorn… what am I missing?

Dad (11:09 a.m.): Hi Ash. Pasta – as in macaroni and cheese (made in hot dog water). Later, I added Panera to my list. I will probably think of some others and will let you know. Have a great day!

Dad (11:20 a.m.): Be sure to add peanut butter (and jelly). Occasionally a pop-tart made the menu as well.

Me (12:19 p.m.): Thank you! Keep it coming.

Dad (2:04 p.m.): Pastry.

Dad (2:06 p.m.): Polish sausage.

Me (2:37 p.m.): I don’t recall you ever making a pastry.

Dad (5:27 p.m.): Didn’t I buy you a doughnut?

Me (8:05 p.m.): Good point. Thanks!

And that, my friends, is a good dad.

To all you other dads out there, may you get really good at making foods that all start with the same letter. And may your kids love you even more for it.

Happy nearly Father’s Day!

– Ashleigh

Day 176: When a Mom Gets Sick

When a mom gets sick, it’s a very confusing time. Because moms don’t get sick. They’re basically superhuman. Dads don’t get sick either, for that matter.

My mom is sick. It’s not life-threatening, but it is uncomfortable. She’s in the hospital and having surgery on Tuesday, 2,000 miles away from where I live.

Discombobulated, I’ve now asked three of my relatives whether or not I should fly out there even though she told me not to. I finally stopped asking when my dad admitted that since they just moved in to their new place, I would be more stressful than helpful. (Although I do feel like I’d be an excellent drug runner… in the sense that I’m really good at picking up legal prescriptions from the pharmacy.)

When I had minor surgery a couple of years ago, my mom was my hero. She stayed with me, she propped me up on the couch and brushed my hair, she lined up a slew of trashy TV shows for me to watch (I think that’s when I got hooked on The Millionaire Matchmaker), and she made me delicious and healthy meals. If memory serves me, she also put together a really complicated table from Ikea for me. It was during the height of my drug-induced “look at all the pretty colors” phase, so I’m a little foggy on that part.

I’d like to assure my mom that her codeine hallucinations aren’t real while I put together her furniture, but instead I’m stuck here. Blogging. And it’s not that I don’t trust my family—I know my dad, grandparents, and aunts and uncles are all excellent TV show-pickers—but I’m finally old enough to recognize all the amazing care-taking my mom has done for me, and I want to pay her back.

So, mom, I’m sorry I’m not there. Don’t worry about putting anyone out or asking for too much. Tell our family what you need and they’ll get it for you. Call me when you’re bored in the hospital and I’ll tell you all about my latest OkCupid date. And Taylor and Paige and I will make you a list of good Netflix movies that don’t require constant concentration.

Also, don’t worry about all the unpacked boxes in your new home. Dad will put everything away in mysterious places and you’ll spend the next five years trying to decipher his unpacking logic. It’ll be fun.