Wednesday, August 31, 2016

On raising kids who stand up to bullies


The following is an excerpt from a new book by my very smart, very funny friend Marjorie Ingall. Mamaleh Knows Best: What Jewish Mothers Do to Raise Successful, Creative, Empathetic, Independent Children is packed with wisdom that applies to any parent, anywhere (as Margie says, "Jewish motherhood is a philosophy not an identity!"); it's also a generally interesting and amusing read. Margie is also the brains behind the apology-analyzing blog SorryWatch—very much worth a read, too. 


Jews have no monopoly on social justice. All of us have an obligation to ensure that our kids care about the lives of people who are not necessarily like us. As the civil rights advocate Rabbi Abraham Joshua Heschel said, “God did not make a world with just one color flower. We are all made in God’s image.”

One tikkun olam lesson we should all be teaching our children is to stand up when someone else is being bullied. Studies indicate that bullying often takes place in front of an audience (in as many as nine in ten cases), but kids who witness bullying defend the victim less than 20 percent of the time. University of Illinois psychologist Dorothy Espelage found that sixth and seventh grade boys who didn’t bully but who were friends with bullies were less willing to intervene when they saw bullying in action. If you have a kid who is considered “cool” (I have not been so blessed, since my husband and I are geeks who have raised geeks), your kid has social capital! He or she can use it for the forces of good! But if your kid’s school isn’t encouraging these small acts of kindness, it’s up to you to encourage them.

As a parent, you can make sure the language you use at home is slur-free, and you can talk about why tolerance and acceptance of differences are vital qualities. As Emily Bazelon points out in her terrific book Sticks and Stones: Defeating the Culture of Bullying and Rediscovering the Power of Character and Empathy, study after study shows that the best way to prevent the harassment of gay students is to make it unacceptable. Saying that you love the sinner but hate the sin does not fly. Schools and camps need to convey that slurs and taunts of all sorts are immoral, and parents can and should talk to principals to be sure the message is getting through.

My own 10th grade English teacher used to prance in front of the classroom with a limp wrist extended, making fun of “little Wally Whitman, shrieking his poems to the ocean.” Ugh. Teachers, coaches and counselors today still fail to curtail the use of hate speech, and parents have an important role to play in making sure the world is a safe space for all. My kids have gay uncles, so we’re a step ahead of the game here, but I still wasn’t sure how Maxie would react when was four, and we were visiting San Francisco and drove through the Castro, the historic gay neighborhood. As we stopped at a light, a fabulously dressed drag queen crossed in front of the car. Maxie stared, and I worried. But then Maxie yelled out the window, “I LOVE YOU, COLORFUL LADY!” (Let me assure you I am no perfect exemplar. I’m still struggling to banish the word “retard” from my vocabulary. I grew up with it, and when I’m tired or careless, it slips out. It’s awful and it’s wrong, and I’ve made sure my kids know I’m ashamed.)

Tikkun olam should be a big tent. Jews have no monopoly on persecution and trauma, even though some of us want to play the Holocaust as a tribulation trump card. Six! Million! Ovens! Beat that, other marginalized groups! Yeah, no. Life is not a suffering competition. It’s our job to ensure that as our kids grow, they work to end ongoing, systemic inequities in their own cultural groups and in the wider world.

The book of Deuteronomy commands, “Tzedek, tzedek tirdof”– righteousness, righteousness should you pursue. We need to right wrongs, support the underdog and fix what’s broken, even when it’s hard and uncomfortable work. A lot of people who become active in doing social justice as adults can’t really articulate why: “It’s just the right thing to do,” they say. It’s what a lot of Christian rescuers said after the Holocaust, when asked why they risked their own lives to help Jews. But one study of helpers and bystanders during the Holocaust found that the majority of Christian rescuers had something in common: They came from loving homes. Middot (the Hebrew word for “virtues”) are, in my mom’s words, “caught, not taught.” When you grow up in an atmosphere of kindness, you’re more willing to imperil yourself to help others – even people you don’t know. This is my ultimate goal in raising my daughters: Raising empathetic humans. (Chris Rock said that one’s ultimate goal is to keep one’s daughters off the stripper pole. Which, I grant you, is also valid.)

Reprinted from MAMALEH KNOWS BEST: What Jewish Mothers Do to Raise Successful, Creative, Empathetic, Independent Children. Copyright © 2016 by Marjorie Ingall. Published by Harmony Books, an imprint of Penguin Random House LLC.

Photo of Marjorie Ingall: Deborah Copaken

Tuesday, August 30, 2016

Put good out into the universe and it will return to you: I'm a believer



Last week, Max lost his balance in our kitchen and fell on Ben's Jumparoo. He broke it but somehow, he was OK. I was more shaken then he was.

Afterward, I started thinking about what could help make Max more steady on his feet. He may need serial casting again, as it's been a few years. Maybe he will start wearing a night cast again. Ultimately, he could need surgery. I pondered advances technology might bring and I came up with "smart" foot braces that could sense if a person was off balance and adjust themselves to provide more support. Then I started thinking that I should do more to help make life better for Max and other children with cerebral palsy.

I think about this from time to time. Earlier in the year, Michele Shusterman—mom to a daughter with CP, advocate and founder of the CP Now Foundation—started offering a free Cerebral Palsy Tool Kit to people who signed up for the email list. It's an incredible resource and a monumental undertaking and I was grateful to her and in awe and a little, Um, what have I done lately?

Occasionally, though, I get reminders that I am putting good out through the blog and it is being returned to me. The first time I ever realized that was when, years ago, a reader told me that Duke University was doing stem cell infusions for kids with CP. That reader was Kate Leong of Chasing Rainbows, and Max got an infusion there when he was six years old. It happened again last week, after I wrote about Ben having a cyst on the side of his neck.

A pediatric surgeon we saw informed us that surgery was the only option, although it wasn't urgent. A woman who reads this blog emailed me. Her husband is a head and neck surgeon at one of the best hospitals in the country. Would I like for him to look at the ultrasound scans? Yes, please.

He did, then referred me to a top-notch pediatric ENT he's friendly with. Dave and I took Ben to see him yesterday for a second opinion. The doctor said point blank he doesn't like to do surgery on children this young unless it is completely necessary, and relief flooded through me—the anesthesia poses a risk, even if it is a minute one.

The doctor noted that it might be possible to do injection sclerotherapy to reduce the cyst, which is absolutely, positively benign. He also informed us that if Ben had a cold or respiratory infection and the bump grew larger, he'd need antibiotics as the main risk of the cyst is infection.

At some point, we will be visiting an interventional radiologist he is referring us to who can better assess if Ben is a candidate for sclerotherapy. But for now, the baby is fine and it's hard to even tell the cyst is there amidst his pudge.

So here's official thanks to this mom who did the good deed for our family, and for the heartening reminder. Maybe someday I will be part of a nonprofit or do advocacy on Capitol Hill or get a company to make those smart foot braces but for now, I am doing what I can to help Max and other children and youth like him right here, and it is coming back to me and my children.

Monday, August 29, 2016

One sunset I'll never forget


As we drove home Saturday evening from a day out, I caught up on email. Finally, I looked up and saw the sun was setting. It's amazing what you notice when you tear your eyes away from your iPhone. I turned around to see what Max was up to. 

He pointed at the windshield.  

"The sunset?" I asked. 

He nodded.

My heart. It was the first time Max had ever taken an interest in a sunset.

It's not that I'm so grateful that Max is appreciating nature. Sabrina thinks hikes are torture. To each their own. This is about me being grateful that Max's awareness is expanding. 

I've always noticed what Max does and doesn't pay attention to, in an ongoing effort to better understand his cognition. He never got attached to any toys as a tot, perhaps because they were generally hard for him to play with. He has never voiced preferences for what is or isn't in his room, other than paraphernalia related to his interests (fire trucks, firefighter gear and one glorious firefighter bedspread). Max could care less about the brands of food he eats or clothing labels. This, I realize, is a good thing. He is not aware when adults or kids stare at him. This, I think, is also a good thing—and should the day comes when he does notice the stares, I hope he will have the wherewithal to stand up for himself. 

Max does, however, notice when I move something around in the house, and he'll ask me about it. He observes when new buildings go up in our area and when stores close. He is very attuned to Ben's babbling, and laughs delightedly when a new string of sounds comes out of his mouth. If we're at the supermarket, he is all over what I'm buying and will readily point out if I grab the frozen food box labeled "vegetable lasagna" (horrors—veggies!) instead of "meat lasagna." 

Max notices when I'm wearing a new outfit or shoes, or when Dave gets a haircut. "Nice dress!" he told me when I recently wore one for an event. This is pretty much the opposite of what I get from Sabrina, who has been known to say "You wore that today?" when I've walked in the door from work.

The other day, I was tidying up Max's room and I tossed a name tag from a camp program he'd been in. It said "Fireman Max" and, excitingly, he'd been in the red group. 

"Hey! Not nice!" he announced, and retrieved it from the trash can.

And I was heartened that he cared. And he was right, I shouldn't have thrown it out without asking him. Because as Max keeps showing me again and again, there's no telling how he'll change and I shouldn't assume he doesn't care because he never has before. 

Watching Max become increasingly aware of his surroundings is like watching the never-ending bloom of a flower. It is wondrous to see. It thrills me; I never know what each unfolding petal will reveal. 

Back to that sunset. 

"You like it?" I asked.

"Nice," he said.

And it so was. I've witnessed a whole lot of glorious sunsets in my life, but this one—seen through the windshield of our minivan on that urban oasis known as a highway—is one I won't soon forget. 

Friday, August 26, 2016

The Special Needs Blogger Weekend Link-up: Post away


What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Stay a baby please please please

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, August 25, 2016

A General Electric ad gets flack for making fun of people with disability


Commercials about a major company that make fun of people with disabilities: Really? That's what some people are saying.

The ads are part of a new campaign by General Electric that center around Sarah, an engineer, and her family's visit to her on the job. In the first one I saw her brother, Ricky, misinterprets what she says about how the company's machines communicate with each other. Here, watch:



The ads aired during the Olympics and are still being shown. The one below about robots, notes a piece in the L.A. Times, was watched more than any other commercial.



These ads have incensed some viewers, who believe Ricky has special needs. "It's obvious he's on the spectrum and this ad exploits such ignorant stereotypes," said one commenter over on ispot. "It really seems like GE is making fun of a young man with intellectual disabilities," noted a YouTube viewer.

Ricky may exhibit some traits typical of autism—he takes things literally, he attributes feelings to inanimate objects—but I don't think GE was purposefully mocking anyone with special needs. What's for sure, though, is that a person who thinks and acts differently is being used as comedic material. And that's such an old-school way to engage the masses.

Commercials like these do us all a disservice, because they promote intolerance—witness the parents' exasperation, the sister's forced patience with her brother. Sure, you could say it's just a commercial but it was seen by countless millions, and it's yet another dig at being different. People with disability already have many societal challenges to overcome. Commercials like these further encourage the misunderstanding that anyone not smack in the middle of the spectrum of normal is laughable.



I'm sure there are people who found these ads amusing. As the parent of a different thinker, I wasn't one of them. The commercials would have been far more compelling if Ricky turned out to be smarter than 'em all.

Image: Screen grab/Building Advanced, Robot-Like Machines

Wednesday, August 24, 2016

6 ways special needs parents can create a better reality

                            
This guest post is by Michael Boylan, founder and CEO of the Reach For Me Network, a support and advocacy community for caregivers of children with special needs. A bestselling author of business books, Michael's latest work is Reach For Me, a memoir about surviving the loss of his marriage, home and business after becoming a father to a child with special needs. 

Michael's 18-year-old son, Connor, has Williams Syndrome (that's them above, with Connor fresh off a performance of Chitty Chitty Bang Bang at age 14). The pair live in the Minneapolis area. As Connor grew up, Michael realized his son was showing him the way. The book features The Connor Principles, a system of rules to live by. The below essay centers around number 8, "Carve your future."


On rethinking your dreams for you and your child.   

Receiving news that your child has been diagnosed with a cognitive and/or a physical special need brings with it a host of intense emotions including deep anger; confusion about the direction of your life and your family's; general anxiety; doubt; frustration; and sometimes, depression. The news for caregivers and families of special-needs children (about 35 million of us in the U.S. alone) is often very intense to digest and process, regardless of one’s personality.

Often, these emotions and feelings bump up against the dreams, goals and objectives you have for your child, as well as yourself, your relationship and your family. This explains the high level of emotions parents experience as they figure out how to make life work while accommodating the needs of their child, and forces us to figure out our new reality, as best we can. What helps:

1) Go off by yourself for a couple of hours and make a list on paper (or on your favorite electronic device) of your dreams, your goals and the really important things that you hoped to accomplish or get done in the next five years. If you are married or in a significant relationship, have your partner do the exact same thing by themselves.

2) Review the list by yourself first, tweaking it as needed before sharing it.

3) Go through your list again and note what you are worried about not accomplishing, achieving or realizing. Be brutally honest; this is no time to mask your emotions or frustrations.

4) Share your list with your spouse or significant other and have them do the same with you, so that you both have an understanding of where each of you is coming from. If you are not married or in a serious relationship, share your list with the important people in your life that may help you out in the care of your special-needs children.

Doing this can help you recalibrate (if you feel the need to) dreams, goals and objectives. It's not easy to do, but it's important for bringing new peace, calm and insights, as well as tapping into new energies that will help you to move forward with a renewed sense of purpose.

Commit to building new traditions around your child. 

It's normal to feel as though family traditions are more difficult to keep in place. So, create new ones!
For example, Connor and I have turned our weekly grocery shopping at Target into an exciting Saturday afternoon ritual. He high-fives all the cashiers as we check out, shares what he has done for the week, then tells them about his upcoming band performance and asks them all to attend. Whoever thought that going to Target could be so much fun? Connor even talks about it at school.

Connor and I have also built a tradition around going to the car wash every day since it brings him such joy. He speaks in his limited Spanish to the people who work there. And, bonus, we always have an amazingly clean Jeep! These experiences bring me joy, too—because when Connor is happy, I am happy, and because they force me to chill out. Once a week, guys come to mow and weed-whack the lawn, followed by blowing the leaves. Connor loves nothing better than sitting on the front stoop of our house and watching the guys do their thing. I used to fight this, telling myself I had no time. However, this has forced me to relax, and it's amazing how much simple satisfaction I gain by watching Connor enjoy.

Make a list of three to five new traditions you could do together as a family that could bring newfound laughter or happiness and teach your other children new perspectives. Start doing them, be it once a month or week. They'll protect your sanity and emotional health, too, given how caregiving can press all of your buttons, sometimes all of the time! These rituals help keep us more even and more calm, and maybe even more grateful.

Guard and protect your relationship.  

In my case, one of the first things to go after having a child with special needs was the romantic part of my relationship. And though my wife and I both knew it, it was never discussed, because we were so focused on our son...to the detriment of the relationship. When a relationship falls apart, the special-needs child and family suffer the most. So you have to protect your relationship, if for no other reason than protecting your children. Some suggestions that could put some honest-to-goodness spark and respect for one another back into the relationship:

1) Witness your significant other doing something special for your special needs child or your family, and then, when they least expect it, compliment them on why it was so special to you. Then reward them, whether it be taking them to dinner or going for a coffee or giving them a card.

2) Think back to some of the crazier things you used to do as a couple, or before you had a child with special needs. Find a time to bring them up and reminisce; if nothing else, you will both get a good laugh out of your trip down memory lane. But it could inspire you to plan a new adventure, too.

3) Everyone says that communication is paramount to the health and durability of the relationship. And yet, it is so hard to actually practice in real life, especially as stresses pile up. One way to keep the communication open is to carve out 15 minutes in the morning or right before bed for a check-in. Share two things from your day that happened, and two things you are grateful for about that person or why you feel lucky to be with them. Who knows what might happen next! There is no one who doesn’t love to be complimented and acknowledged.

Visit another special needs parent. 

When you're feeling overwhelmed by responsibilities, it may sound counterintuitive but lending a hand to another parent who seemingly has it worse can put things in perspective for you and help both of you feel good. Also great: Encourage your child with special needs to help out. It can be really rewarding for everyone.

At the very least, take another special needs parent out for coffee and just listen to them talk, period. You are helping them release whatever is on their mind, and you will also feel the power of being there for a fellow caregiver.

Take care of your body, mind and spirit.   

As a type-A personality, admitting to others that I was struggling from time to time with my caregiver responsibilities seemed weak. My style was to power through and see if I could do everything that I used to do before Connor was born. However, the harder I pressed forward with my can-do attitude and mentality, the more frustrated, angry and depressed I became. I've learned to make more time for me. How?

1) I unplug, even leaving my phone at home, and take a walk alone twice a week in a peaceful,
natural environment. It clears my mind.

2) I plug into my son's serenity. Connor likes to bounce on a big red ball; it calms him down.
Focusing on Connor doing that gives me the opportunity to pray and focus on what I have, instead of
feeling sorry for myself about the things I don't have.

3) I carve out time to go to the gym and run. Our gym has a Kids Club where Connor could spend time
while I was working out. Now that he is over 16, he bounces on his ball as I work out. It makes me a
better father.

Be silent with your child once a week.

There is so much we can learn from our children, even when nothing is said. There is sometimes a magical vibe that I get from Connor just by sitting quietly by him or rubbing his back or his head (if he will let me). Try it sometime with your child and see what comes.

Photo credit: Bob Boylan (Michael's father, a professional photographer)

Tuesday, August 23, 2016

Let's play: Who's the more neurotic parent?


If you'd asked me last week who's more neurotic about Ben's well-being, me or Dave, I would have voted for Dave. In my opinion, of course, although the facts are hard to argue with. Like: Recently, we were supposed to go on a family retreat held at a camp and Dave decided Ben shouldn't go because there were bugs and maybe a thunderstorm and the bunks were...bunks.

While Dave was there with the kids, I sent him this photo because Ben started pulling to stand and looked so cute. "Why is he standing on his toes?" Dave wanted to know. "Because he's baby," I noted.


Dave is usually a pretty chill person, and it's tempting to tease him about his hyper-caution with Ben. After the baby was born, Dave would voice worries such as, "When I put him down in the crib, his head fell back a little before his body was on the mattress, do you think that's OK?" He was just as overly concerned during my pregnancy, when he'd text reminders like "Eat salad and eggs" and I'd respond "For dinner tonight I am planning to have undercooked meat, raw eggs and unpasteurized soft cheese. Do you want me to save you some?" 

As of today, though, I'm no longer sure who's the more neurotic parent. Maybe we're tied.

The realization happened on Sunday, when I went to visit my friend Erica. Her son is in the hospital, and I brought her some therapeutic cupcakes. As we sat on the floor of her kitchen and played with Ben, she said, "What's that on his neck?" I looked. And, indeed, one side of Ben's fleshy neck was pudgier than the other. Then he moved and I could see that there was a definite blob there, like he'd swallowed a mini golf ball and it was stuck in his neck.  

My heart stopped. As Erica talked, I kept staring at Ben's neck. The lump was mostly only visible when he looked to the side. As soon as I left her house, I sat in the car and Googled on my phone. Best case scenario, it seemed, it was a cyst. The worst case is too scary to mention. 

I called our pediatrician's emergency line. The doctor on call said that given that the lump wasn't red and hot, it didn't sound infected, and I could bring the baby in on Monday. I wasn't so sure either of us could wait.

Whenever I looked at Ben all I could see was that lump. It was like he'd grown a third cheek. As he hung out in the playpen, I scrolled through pictures of him. Mostly, he just looked like he had a pudgy neck, but I realized that in one of the photos I'd put on the blog just yesterday, the lump was visible. How could I not have noticed it? I felt awful and not nearly neurotic enough.


Meanwhile, what I did spot was a big brown spider on the floor, in a corner of the kitchen. It literally was the most gigantic spider I'd ever seen outside of a zoo. I thought it was the one I'd noticed in our living room a couple of weeks before that scuttled behind a bookcase when I tried to whack it with a shoe. 

I grabbed some newspaper and WAP! WAP! WAP! Ben cracked up.

I grabbed at the spider with a couple of paper towels, averting my eyes; crumbled the paper towels, put them in a plastic bag along with some other garbage; tied the bag and tossed it in our kitchen trash. I wasn't taking chances. And then, nerves frazzled, I booked an appointment at a local pediatric urgent care center and headed out with the baby. 

"It's a cyst, filled with fluid, but you might need to head to the ER and get an ultrasound today," the doctor told me as she felt Ben's jaw. "It's pretty large."

"Is it dangerous?" I asked.

"If it gets bigger, it could impair his breathing," she said. 

Tears filled my eyes. The cyst confirmation was unnerving, even more so that the doc thought it could require an ultrasound ASAP. She told me she'd check with colleagues at the ER, and walked out. 

Ben proceeded to grab all the books on the window ledge by the exam table and giddily toss them on the floor. He was his usual self. I was not. The doctor came back, said we could wait until the next day when we visited the pediatrician and prescribed an antibiotic to ward off infection. 

On the way home, I called Dave and told him what was going on. He was freaked out. I tried to calm him down, even though I didn't feel calm. 

Back at home, something suddenly occurred to me in capital letters: WHAT IF THE SPIDER WAS A BROWN RECLUSE AND IT BIT THE BABY? 

Brown recluse spiders have venomous bites. The photos I googled all kinda-sorta resembled the spider I'd seen. Forget the fact that these spiders are not native to the Northeast, where we live. Forget the fact that Ben's lump looked nothing like the bites in photos—it wasn't hard or red, there was no telltale white spot or bite mark. 

But still: IT COULD BE A SPIDER BITE.

Later on, after Dave, Max and Sabrina were home, I dug around in the garbage. 

"What are you looking for?" Dave asked. 

"Nothing," I muttered, because I didn't want to further freak him out.

I opened the plastic bag I had tied. Gingerly, I unwrapped the paper towels, dreading the sight of the spider. Only the spider wasn't there. What if it was somehow still alive and had done a Houdini escape? Was it one of those jumping spiders? Were they poisonous? I quickly shoved the little bag back into the garbage, grabbed the whole bag and brought it outside to the trash bin. Minutes later I went back out, removed the bag that may or may not have still contained the spider and put it on a shelf in the garage. Just in case it ever needed to be identified. 

Dave and I kept discussing the neck lump until the season premiere of Fear The Walking Dead came on, and we distracted ourselves with zombie gore.

At some point, Dave went up to check on Ben. "Honey, he usually sleeps with his legs tucked under him, tonight they are flat, do you think he's OK?" Dave asked, and for once I didn't think he was being ridiculous. I went upstairs and looked for myself, and Ben seemed fine. 

I slept fitfully that night. I dreamed that Ben was sitting at the edge of a table and fell over; I woke up with my arm flung out, trying to catch him. Several times, I got up to check on Ben, touch the lump and make sure it hadn't gotten any bigger or felt hot.  

First thing the next morning, Dave took the baby to the pediatrician's walk-in hour. "This doctor also thinks it's a cyst and we need an ultrasound," he said when he called. Afterward, Dave headed over to the imaging center down the street and they took the baby right away. The radiologist confirmed it was a cyst. It had likely been congenital, present since birth, but for some unknown reason it had blown up.

Later that day, the pediatrician called with the results of the imaging. The cyst wasn't just a fluid-filled sac; it had several compartments, with some tissue. That means it will likely require surgery, rather than just a drainage procedure. Any chance it was a spider bite? Nope. 

So now Ben has an appointment to see a pediatric surgeon on Wednesday and a mom and dad who stare obsessively at his neck and hope the surgery will be minimally invasive and won't cause any major discomfort. The bag of garbage that may or may not contain Houdini spider is sitting in the garage. As for me, I will not be teasing Dave anytime in the near future about being a neurotic parent. 

Monday, August 22, 2016

Stay a baby please please please


Ben's 10 months old, and when I posted his photo on Facebook last week a few people noted how big he's getting. Which made me a little sad.

I am clinging to this boy's baby-ness. I don't want it to be gone, and not just because it means I'll be knee-deep in toddlerhood. I am acutely aware of how precious these days are.


I haven't had enough of Ben in the summer rompers, with his roly-poly thighs, dimpled elbows and creased neck, wrists and ankles.


I haven't had enough of him enjoying the pool float.


I haven't had enough of watching him try to shove his little bare toes into his mouth.


I haven't had enough of watching him crawl beneath the kitchen table.


I haven't had enough of snuggling with him when he's out of the bath.

I haven't had enough of Ben blowing raspberries, the tufts of hair coming in and sticking out behind his ears, him patting Max's and Sabrina's cheeks, "Da! Da! Da!", holding him in my arms as I give him a bottle, spoon-feeding him, playing "Peek-a-boo!", that giggle when I drop stuff, his fist wrapped around my finger, the delight on his face when he's lying on the changing table and I do The Itsy Bitsy Spider, the way he sleeps with his knees tucked under his body and his butt up in the air, his intense focus as he examines the TV remote control, him sucking his thumb, how he holds up his arms when he wants me to pick him up, how he attempts to taste whatever he gets his hands on, his baby scent, when he rests his tired head on my shoulder.

I haven't had enough of any of that baby stuff.

I didn't feel this way with Max—I wanted him to get bigger, because I was desperate to see what he would be able to do. Would he crawl? Walk? Talk? With Sabrina, I felt similar to how I do know; I cherished her baby days. The stay-a-baby longings are most intense with Ben, though. We waited so long to have him, he is the last baby we will ever have, he is delicious and I am greedy.

I will, of course, love and adore the next phase of Ben. But I want more, more, more baby time.

My friend Cindy's comment on Facebook gave me a lift.

"He's totally still a baby!" she said.

"Thanks, I needed that," I answered. And I meant it.


Friday, August 19, 2016

The Special Needs Blogger Weekend Link-up: Le place for le posts


What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: #winning: What new thing has your child done lately?

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, August 18, 2016

Fear of falling: We can't always be there to protect our kids




"What's that mark on Max's shoulder?" Dave asks.

"He fell yesterday," I say, grimacing.

"What happened?" Dave wants to know.

"When we were at Peggy's house for a swim, he came out of the basement door and tripped on the step," I tell him.

I'd been tending to the baby, and looked up to see Max falling.

"MAX!" I wailed, my heart beating faster, and ran over to help him along with a few other people. "Are you OK? Are you OK?"

He stood up. He said he was fine; the bruise would appear later that evening.

"He fell pretty well," someone noted, meaning that he had fallen slowly to one side and not crashed on his face.

"Yes, it was good he fell to the side, because he can't reflexively put out his arms to protect himself," I said.

When Max falls, which happens here and there, he almost always falls to the side. I don't know if he is able to will his body to do that, or if it's just luck. Because of the cerebral palsy, his arms don't automatically launch outward when he goes down. Sometimes, he trips over his feet. Other times, he's off balance; twice in the last few months, Max has slipped off his chair at the kitchen table and onto the floor.

When Max was little, I'd sometimes see bruises or scrapes on his body when I got home from work and unless I'd heard from the nurse at school or our babysitter, I wouldn't know why because he didn't have the words to tell us. One day, I noticed Max had a chip on one of his front teeth. It was tiny, discernible only by me, but to this day I have no idea what happened. I still find it upsetting to look at, a reminder of Max's vulnerability.

These days, Max has the communication skills to tell us how he's gotten hurt when it happens, only he doesn't want to because he thinks I'll worry. He came home from a camp program a few weeks ago with an oozing scab on his elbow and a smaller one on his knee, and refused to talk about it. Finally, he let out that he'd tripped on a step.

Steps can be a challenge, and I marvel at his ability to walk up and down the ones in our home. He clambers upstairs on his hands and legs because he feels more secure that way, but he's fully upright when he goes down. I hold my breath every single time because I'm scared he'll lose his footing, yet he holds onto the railing, goes slowly and manages OK.

In general, Max is pretty steady on his feet. He is a very good walker—a miraculous walker, I should say, given his grim prognosis at birth. He gets around fine despite the fact that his right food turns slightly inward. If this worsens as he gets older, and his muscles grow increasingly tight, surgery might be involved.

At night, when I take his socks off at night and rub his feet, they feel so stiff.

"Does it hurt?" I ask as my thumbs work his tight arch.

"Feels good!" he says, and gives me one of his sweet smiles.

My fear of Max's falling isn't something I regularly think about. It's a latent concern, always there, like my fear that he'll have another seizure or stroke. This is pretty much special needs parenthood in a nutshell: I cannot prevent Bad Things from happening to him. I can only do my best to guide him, hope that I am by his side to help him if he falters and try not to preoccupy myself with what I can't control.

Wednesday, August 17, 2016

6 ways to protect a relationship from special needs child stress


This guest post is by Julie Keon, mom to Meredith and author of What I Would Tell You: One Mother’s Adventure with Medical Fragility. It's a collection of writings about the hard-earned wisdom she gained in the first ten years of mothering her daughter. When not writing, Julie creates meaningful ceremonies as a Certified Life-Cycle Celebrant for life transitions including birth, marriage and end-of-life. She lives in Ottawa Valley, Canada. 


My husband, Tim, and I celebrated our 17th wedding anniversary in June. This is a day of accomplishment and reflection especially as the years pass and we are faced with challenges many couples will never have to face.

I can close my eyes and travel back in time to the 28-year-old woman I was waking up on our wedding day and ready to embark on this big adventure of marriage. I had spent months writing our ceremony and we were very clear on the responsibility involved in taking these vows. We were acutely aware (intellectually) that life was going to present some tough times but we also knew our love was strong and deep and could tackle any challenge that came our way. Besides, we had already gone through some very difficult times (enter sarcasm) like the stomach flu, unemployment and periods of soul searching and personal growth.


Life didn’t disappoint and four and a half years into our marriage, our one and only child, Meredith, was born after a healthy and normal pregnancy. Right at the time of birth, after a straightforward 12 hour labour, there was a hypoxic episode which we learned five days later caused massive and irreparable brain damage.

Suddenly, our connection, the life we had created, the plans we had made and the dreams we imagined all unravelled right before our very eyes. Our broken hearts and shattered hope interfered with our ability to do what we had always done in the past which was cling together, love one another and find our way. We had seven and a half years under our belts and a solid, cement-like foundation but that wasn’t enough to bear the weight of the news that the life we had planned was not going to be. Once the sheer shock of it all wore off, anxiety and depression moved in and our days were made up of moments where we simply tried to survive.

When a couple has a child with medical complexities, family, friends and even the social worker at the hospital, will tell you that you need to communicate. People will rattle off statistics about the high rate of divorce among parents of children with special needs. We tell couples that this experience will make you or break you and then we virtually leave them hanging. For the couples just starting out, we don’t offer a lot of guidance and practical tips on how to keep your connection intact and intimacy alive even when the natural tendency is to walk away from each other.

I recall a lunch date with my husband a few weeks after we got home from the hospital. We had been living at the Children’s Hospital of Eastern Ontario for ten weeks and now we were home and spring was upon us. My parents came to visit for the day and urged us to slip away for lunch.  I wanted it to be like we were before Meredith was born. I desperately wanted to see a glimmer of "us." Instead, we sat across from each other, fragile shells of our former selves, awkwardly attempting to make conversation. Everything was difficult in those early days: sleeping, waking, eating, talking and even breathing.

Like anyone who is going through a traumatic loss, we mourn uniquely. The how, why and what of grieving is very individual. Naturally, Tim and I coped very differently. Initially, he shut down and I took on a "We got this" mentality. I became like a machine, obsessed to do it all right and do it efficiently, whereas he moved further and further away from us and into himself. Five months after Meredith’s birth I had serious doubts that we would make it at all.

A move to my hometown and the promise of a new beginning seemed to jolt us out of the dark place we had found ourselves. We bought an old home that needed lots of love and care to make it livable. We moved in with my parents while the renovations took place and I think that relieved a lot of our worry and stress as we had extra support and care. Finally, we moved into our new home eleven months after Meredith’s birth and it marked a new beginning. There is always hope in new beginnings.

It was around this time that we started having people in our home to offer respite and therapies. This presented a new challenge to us. We knew we needed the help and we were grateful to live in a province that gave us financial support to employ relief workers and yet as we received more and more help, we watched our privacy dwindle. We fought against night nursing for a long time because the thought of having a person awake downstairs caring for our child while we slept seemed so unnatural and foreign that we just couldn’t wrap our heads around it. Eventually, it became a necessity and now, almost thirteen years later, we have night nursing seven nights/ week and helpers in our home every single day.

In spite of all we have endured over the years, we have somehow managed to find our way back to each other. The road hasn’t been smooth traveling. We have both experienced periods of depression when residual trauma surfaces and more issues need our attention. We had to make decisions right from the start that we were going to hang on and stick it out no matter what. We were committed to our marriage and to Meredith.

In order to find our way back to each other, we had to be courageous and vulnerable and throw caution to the wind. I wish I could share one magic tip that made it all okay again but when I look back, I know it was an accumulation of many things plus sheer determination and stubbornness that got us through the dark times and brought us back to a place of deep intimacy and friendship.

I think back to those early years, long before Meredith was even a twinkle in our eye, and I applaud our willingness and naivety to vow to love one another "for better or worse." The truth is, most couples never imagine that the "for worse" part can be really, really devastating. And to be clear, Meredith was not devastating to us.  It’s the suffering and struggles she has had to live with that have been bone crushingly, painful to witness. We also don’t realize that marriage (or partnership) is a continuous exercise in creativity, soul searching and a never ending expansion of our love. Just when you think you have it all figured out, you are forced to tweak and adjust how you operate within your intimate relationship. And that is under normal circumstances let alone extraordinary ones.

I tend to be very solution oriented and I am all about preventative health care. This means that I (we) took steps early on knowing that this experience was going to change us as individuals as well as change our relationship. The good news is I don’t think it is ever too late to make changes for the betterment of your relationship. If you have neglected your partner and have convinced yourself that there’s no point in trying to save your relationship, ask yourself this: "If you could return to a harmonious, passionate, deeply satisfying relationship, would you?" If the answer is "Yes" then begin now.

Every step you take, no matter how tiny, will generate positivity within your intimate relationship. Here are some tried and true ways to stay afloat when you feel as though your marriage/ relationship is drowning:

1. Seek counsel.

There is nothing like setting aside an hour to unload on an objective, non-judgmental listener. You don’t want to go to just any counsellor or therapist, though. Find out who, in your own community, is well educated and experienced with the complexities of parenting a child with special needs and/ or medical fragility. Don’t be afraid to interview a few counsellors over the phone and ask about their experience in working with couples and working with trauma and grief. Don’t waste your time on someone who specializes in addictions for example, when you are dealing with complicated grief and marriage distress.

2. Go on dates.

This tip may induce a sense of panic.  Let it be known that a "date" does not necessarily entail dinner out on the town and four hours away from your child. This doesn’t even mean you have to leave your house. A date is simply setting aside some time where the focus is on your beloved. Shut off the T.V. and put away those phones (the killer of all intimacy). It might include a bottle of wine, music and conversation. If you have been operating like zombies for the last two years, this will feel incredibly awkward and foreign at first. Awkward or not, do it anyway. If it means you just sit there staring at each other, it’s a step in the right direction.

Practice is necessary to find your way back to each other. Next time you do it, you might actually be able to talk. Start slowly if it’s been a while. Putting pressure on yourself is not going to inspire romance. Watching a movie in an upstairs bedroom while our daughter has been cared for downstairs has given us just a little time alone and a breather from everyone else. Be creative and set the intention to give of yourself to each other. Even a fifteen minute walk outside holding hands is better than nothing at all.

3. Don't neglect gestures of kindness....

Take the initiative to let your spouse/ partner know that you think of them even in the midst of unrelenting stress. In our early dating years, Tim and I used to indulge in Häagen-Dazs ice-cream (caramel cone explosion, to be exact). After Meredith was born, I would occasionally buy a container while grocery shopping. We would share this treat in the one hour we had together in the evening after Meredith was in bed and before the night nurse arrived. Long before parenthood, we used to give each other massages. Tim always loved having his head massaged especially because he is prone to headaches. Sometimes, no matter how bone tired we were, we would spend ten minutes before sleeping to give one another this gift of touch and love. Exhaustion can bring one to tears and yet the rewards of connecting for even ten minutes contributed to our ability to find our way.

4. ....or sex.  

I once had a family relief worker ask if and how Tim and I managed to maintain any kind of sexual relationship. She asked innocently enough and yet it felt like an invasion on the teeny tiny amount of privacy we had left in our lives. I couldn’t write an article on finding your way out of the darkness without including tips on keeping the primal fires of passion burning. (I really should start writing romance novels!)

First and foremost, there will be periods of time where you live like roommates and sex starts to feel like a thing of the past.  If there is one thing that will depress a healthy, vibrant person, it is the slow and painful death of their sex life. Sometimes, though, it is depression that kills your sex drive. Sex is a crucial and vital part of a healthy relationship. The thing is, sometimes it is impossible to give and to get. In those times, it is critical that you still maintain some sort of physical connection. For example: kiss one another good morning and good night without fail, hug often, hold hands, turn off all technology and just focus on each other (see tip #3) and even tell your partner that if you weren’t so bone tired and messed up you would take them to bed and make them howl! Sometimes, you have to look after your own needs and if that involves a vibrating, silicone sea creature from China, so be it. No shame in relieving stress with some self-love.

Logistically speaking, we have had to let go of spontaneity and now plan our romps in the hay. When our daughter is out for an hour long walk with one of her caretakers, we take advantage of our empty house. You learn to become efficient when time is short and you also learn to be very, very quiet. We also bought a memory foam mattress and decided to forego the bed frame, choosing to have the box spring and mattress right on the floor. This was a game changer. I highly recommend a memory foam mattress. There is a fan in our room, too, which induces white noise and masks "other" noise. My mother keeps asking when we are getting a "proper" bed but that won’t be happening anytime soon. That memory foam mattress on the floor has allowed for the rebirth of an active sex life.

After a lot of time has passed without any sexual connection, it can be really difficult to get back on the saddle but you know what, you just have to do it. And if it doesn’t work the first time (stress, hormones, etc. can wreak havoc on a sex life), try, try again...and again. You may need to work through tips 1-3 before embarking on this one but know that it is possible to quench your thirst after a drought.

5. Keep your eyes wide open.

When you fall in love or make the decision to marry, you look at the person you are joining with and think they are pretty darn perfect. When life interrupts the great thing you have going, as it inevitably will, you quickly learn that this person you are with, isn’t all that perfect. In fact, they are far from it and the reality that we are all imperfect beings, hits you like a Mack truck. Looking at your partner with open eyes and a fresh outlook, can really help you through the dark periods. Digging a little deeper and finding compassion and giving them genuine love and understanding is one of the ways you will halt any kind of disconnection.

6. Set the intention. 

There is risk involved in finding your way back to one another. If a lot of time has passed since you were the happy couple you originally were, then it is going to take courage. It can even feel easier to remain stuck and bitter. Make a decision that you are not going to be a statistic. Look at your partner and say to them, "I am in this for the long haul with you. I chose YOU and I love YOU. I know that we are very far apart right now but I am not willing to let this go. I know that on the other side of grief, suffering, sorrow, anger and guilt, there is love and there is 'us' and the essence of this beautiful thing we created." Vow to each other that you will stay right here side by side for as long as it takes to find your way out of the darkness.

The truth is, sometimes you can want something so badly and still it isn’t enough to find your way back to one another. Sometimes, one person is willing while the other has one foot out the door and has already decided that they do not want to put the effort into trying to make it back to a place of harmony and love. You only have control over yourself and how you will conduct yourself in your relationship with your partner. Fight for it trusting that, in the end, if it all falls away, you can know in your deepest parts that you gave it your all. If you are reading this and your relationship did not survive under the suffocating stress that this experience brings, then tuck these tips into your pocket for when a new relationship is on the horizon.

Tim and I know that we have to remain vigilant when it comes to protecting our relationship. There will always be new stressors and unexpected detours in the months and years to come. We know that we may ultimately outlive Meredith and if and when that time comes, navigating that tremendous loss will be monumental.

Your marriage/ relationship will go through some harsh, frigid times but this does not indicate the end. You see, that is where many couples make one of the biggest mistakes. As soon as things get tough, they call it quits. We have learned that each time you triumphantly surpass the challenging times, you deepen your intimacy and you get to experience a love that you may have never imagined. There are gifts that come from the darkness and only when you find your way through the darkness, will they be revealed.


Copyright © 2016 Julie Keon. This post originally appeared on the Hope for HIE site.

Tuesday, August 16, 2016

If only more people treated our kids like their siblings do


Max had a splash fight early yesterday evening with my friend Peggy's daughter, Gabi. Peggy has swims for kids with special needs throughout the summer, and we had finally made it to one. Her son, who has Down syndrome and autism, was happily floating around, along with five other kids. 

I had been a little worried about coming. Our babysitter was supposed to watch Ben so I could be in the pool with Max, who doesn't swim, but she cancelled. Peg told me that Gabi, who used to be a lifeguard, would be there along with other adults to help keep an eye on him. And so off we went, Ben crabby because it was his bedtime and Max giddy (Sabrina was at camp). I kept reminding Max that he couldn't go in the deep end. 

At the pool, Max patiently sat beside me as I gave Ben his bottle. After, I put Ben down in the car seat, slipped mosquito netting over him and he fell asleep. Then I helped Max walk down the steps into the pool and cautioned him once again not to go in the deep end. Of course, soon enough he spied a tube shaped like an ice-cream cone at the deep end and ambled toward it as my heart sank and I shouted "Max, you can't go in the deep end!" Peggy swam over to get it for him.

I started chatting with a couple of other moms, and when I looked back at the pool again, Gabi and Max were having a splash-off and cracking up. A little while later, I saw her pulling Max around the pool in a gigantic tube. Max could not have looked any more blissful. I felt the same. 

Gabi knew she could splash around with Max just like any kid. (He started it!) She also knew that he couldn't clamber onto that tube on his own, and so she helped him and took him for a spin. She knew how to treat Max because of her little brother. It was no big deal.

Sabrina's the same. In general, she sometimes helps Max, sometimes has fun with him, sometimes gets annoyed by him. "Max, you're such a brat!" she likes to inform him. Like any siblings, really. Yes, there are times when she's jealous of the extra attention he gets. But mostly, they have a typical relationship.

This is all to say, siblings treat their brothers and sisters with special needs as they would any other child, while instinctively offering them the extra assistance they may need to get along in this world or just simply have a good time. Or, as the case may be, insisting that they do a task themselves. "Max, you don't need ME to get you that cup because YOU CAN DO IT YOURSELF!" Sabrina will point out to Max, who will growl back and then proceed to get said cup.

One of my greatest wishes in life, as I've often noted on this blog, is that more people had the same normal approach to our children. Treat them like other children and youth. Give them assistance as needed to level the playing field. Insist that they pull their weight. Splash them if they want to be splashed. Tug them around on a tube if that's what floats their boat. Bob with them in the water like they are any young people anywhere having fun in a pool on a warm summer night. 


Monday, August 15, 2016

#winning: What new thing has your child done lately?


There's nothing quite like that buzz you get when your child does something new, big or small. Max's latest, greatest achievement: He's choosing his own clothes in the morning.

Up until now, Max has never much cared about what he wears, nor has he actively participated in getting himself ready for school. But one day last week, as I slept in and Dave fed the baby breakfast, Max went upstairs and came back down with his outfit (complete with underwear and socks) for the school day.

Now, there is all sorts of win in this feat: He chose to do this on his own. He opened his drawers. He made clothing choices. (Matching ones, unlike SOME fathers who shall remain nameless, love you honey!) He clutched his clothes in one arm, holding onto the railing with his left hand. He went up and down the stairs alone—not new, but something I will never stop being grateful for.

Max has been getting his clothes ever since. Sometimes, he drops an item on the stairs and one of us will grab it, because it's dangerous for him to bend over and get it. All in all, he is doing an amazing job. And I feel that wheeeeeeee-he's-doing-it buzz whenever he walks into the kitchen, clothing in hand, big grin on his face—because he's feeling that wheeeeeeee-I'm-doing-it buzz.

No matter how old Max may get, the excitement about his progress will never get old.

It's also happy-making to hear about the new stuff other children are up to. Last week my friend Peggy shared on Facebook that her son, who has Down syndrome and autism, had realized her husband wasn't around and verbalized "Is Daddy away?" I knew just how amazing that awareness was.

So, let's get a buzz on together: What new thing has your child done lately?

Friday, August 12, 2016

The Special Needs Blogger Link-up: Your weekend reading material


What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: My son called me mean and other exciting milestones

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, August 11, 2016

Carbon monoxide poisoning: How to protect your family all year long


People tend to think of carbon monoxide poisoning as mainly being a wintertime danger. Most CO poisonings do occur then, but turns out it can be a summertime issue as well. Every year, more than 400 Americans die from unintentional CO poisoning not linked to fires, and more than 20,000 visit the emergency room, according to the Centers for Disease Control and Prevention (CDC).

As ambassadors for Kidde, Fireman Max and I are here to share key safety pointers from Kidde and safety organizations.

Keep the grill away from the house

Don't use charcoal or gas grills near a window, through which CO fumes could seep in. Set yours up an an open area that's at least ten feet away from your house or building. (Word from Fireman Max: "Hot dogs taste very good.")

Make sure generators are properly ventilated

Summer storms can make generators kick on—and it's key that they're properly ventilated to avoid CO poisoning. Keep them away from windows, doors and vent openings, advises the National Fire Protection Association. And never use portable generators inside homes or garages, even if doors or windows are open, notes the Consumer Product Safety Commission (CPSC).

Got a motor boat? 

Carbon monoxide can accumulate in or around motorboats, so you'll want a carbon monoxide alarm there, too, per Safe Kids International.

When camping...

Avoid using a charcoal grill, hibachi, fuel-burning lantern or portable camping stove inside a tent or camper, says the CDC.

Turn the car off

Never leave a car running in an attached garage or carport. 

Be alarmed!

Only 42 percent of homes in America have a working CO alarm, according to the CPSC. You want to install at least one battery-operated CO alarm or AC-powered unit with battery backup on each level of your home and near sleeping areas. We have several Kidde Sealed Lithium Battery Power Carbon Monoxide Alarm with Digital Display, which has a 10-year battery. The company's new RemoteLync Monitor listens for smoke and carbon monoxide alarms in your home and sends an alert to your smartphone when there's a potential issue. 

Know the symptoms of CO poisoning

CO is odorless, colorless and only detectable by a working CO alarm, so it's good to know the symptoms of low to moderate CO poisoning including headache, fatigue, shortness of breath, nausea and dizziness, according to the U.S. Fire Administration. Symptoms of high-level CO poisoning: mental confusion, vomiting, loss of muscular coordination and loss of consciousness.

Pack this on your road trip

Since there's no guarantee your hotel or vacation rental will have a CO alarm, consider toting a battery-operated, UL-listed carbon monoxide alarm.

More from the fire safety series from me and Fireman Max:

9 summer fire safety tips for outdoor fun

Making a family fire escape plan for kids with special needs

What we learned from our home fire safety inspection

Protecting your family from a home fire

For additional info, check out: 

Kidde on Facebook
@KiddeSafety on Twitter
@kiddefiresafety on Instagram

This post is one in a series sponsored by Kidde, for whom I am a compensated ambassador. 

Image source: Flickr/SmartSign

Wednesday, August 10, 2016

Our kitchen renovation: one fantasy, come true


When we bought our house 14 years ago, the summer I was pregnant with Max, we knew we wanted to redo the kitchen and started a dedicated savings account for it. As Max got older we realized we also needed to make the kitchen more Max-friendly. Finally, last year, we planned to forged ahead...then I got pregnant.

For the record, going through a kitchen reno while pregnant is not as awful as it sounds, especially since it gives you a handy excuse to do takeout (um, not that I've ever been such a cook). I've also been spending more time there than ever so it was worth it; the alternate, going through one with a little kid, seemed far worse. I'm really happy with the results, and thought I'd share our reno story. Plus I'm obsessed with home design. (And of course I decluttered for the "after" photos!)

Unless you are making structural changes (we weren't, thankfully), cabinetry is usually the main cost of a renovation, aside from construction work. I did a fair amount of research on the best American-made ones. I looked for high ratings and affordable quality, along with a company that's been around for decades and cares about the planet. We went with StarMark Cabinetry, which has been in business for fortysomething years and is based in Sioux Falls, South Dakota. Our design was done by the well-respected StarMark dealer Kitchen Intuitions and we worked with Kimberly Platt, a really patient young woman.

Our old kitchen wasn't too awful—it just wasn't our style. I was over the pink terra cotta tile floor. And cabinets had started to look like a small animal had gnawed on them:

Attractive, eh? 
We packed everything in the kitchen, set up the microwave and fridge in our dining room and lived off paper plates. (Tip: If you are putting a fridge in your wood-floored dining room, make sure it's placed on a wooden board so it does not leave a dent.) We asked the crew to seal all doorways to help prevent dust from filtering out, although some is inevitable. It helped to have a husband who would boom "THERE'S A HOLE IN THE PLASTIC AND SHE'S PREGNANT!"

StarMark has 111 door styles, 158 colors (plus custom colors to match any paint swatch), 14 species of wood, 3 exotic veneers (including bamboo) and thermofoil. That may seem like a lot to choose from, except I loved the cabinets our friends had, so I brought in a photo and got a similar style.

Before: The galley area of our kitchen. All the appliances were crammed in here, there was barely any countertop space and it generally felt claustrophobic.


Baby, before!

During

After! We gained a good two feet of walkway space.

We had outlets installed in the upper cabinet to keep phone and iPad plugs out of sight. Dave hoards paperwork and unopened mail there; it's his cabinet cave. 
We went with semi-custom cabinetry, meaning StarMark would adapt cabinetry in stock to our specifications and with extra details. We got the benefit of custom cabinetry, without the high price tag. We wanted inset cabinetry, which costs a bit more but in our opinion looks cleaner. It means that instead of doors and drawers being in front of the cabinet face frame, slightly larger than the openings, they are set into the face frame.

The only drawbacks of inset cabinetry (besides the higher cost) are that you get slightly less space so oversized plates won't fit, plus the doors may need to be seasonally adjusted with temperature change. Also, your contractor better be on top of his game as they require a more precise install.

Our stash of cooking dishes/storage containers. See how the lids are all grouped together, on the left? A friend who does professional organizing suggested it to control cabinet chaos, and it helps.
Before: Our dining area. And, why, yes: There was a couch there. We were going for that coffeehouse style. Fail?

After! This is where the kids sit and do their homework, or sit and whine about doing homework. Those are IKEA Ingolf chairs.

Appliance alley; the drawer microwave saved space. Entertainment bonus: The baby thinks it's a laugh riot when it opens and closes.
One of our favorite design ideas: a built-in table. As much as I like the way islands look, one wouldn't have been practical for Max since he couldn't have gotten himself up on tall chairs. This table has worked incredibly well for our family. It was designed to be wider, but I kept worrying that there wouldn't be enough of a walkway between it and the deck doors. An architect I know gave us specs to narrow it down, and the contractor did.

The cabinet door style is LaFontaine—a flat-panel style with clean, simple lines that's StarMark's best-selling inset door style. I wanted a quad of glass windows on top. Even though you lose storage space since they basically function as a display (read: you're not putting a jumble of dishes there), it makes areas look more open. In case you haven't figured it out yet, I watch entirely too much HGTV.

Inset cabinetry and drawers can come with or without a bead on the face frame. We got a subtle one. 
The cabinetry finish: Marshmallow Cream, a standard color in the white/off white palette. It's a creamy warm white. I didn't want a true white, which I thought would look too modern. Our home is from 1928 and we wanted a transitional look. And when I say "we" I mean "I" because Dave mostly left all the decisions up to me unless I wrestled him to the ground and forced an opinion out of him. Kitchen design = not his thing.

One big issue that the renovation needed to solve was our so-called "pantry"—aka the black hole. It had fixed, deep shelves and stuff would get stuck in the back, never to emerge again for years until I did a rare clean-out. It was the opposite of functional.

We were so desperate for better storage we kept a mesh shoe holder hanging on the door for snacks. Don't laugh. Oh, OK, laugh.
The new pantry, with pull-out drawers below and a whole lot of storage space above.
Max was so psyched he helped put stuff away. (Admittedly one of the last times he has helped put stuff away.)
Particularly genius: soft-close drawers throughout the kitchen. Max used to unintentionally slam drawers closed with a loud CLACK! Not these. We got a drawer with a pegboard and movable wood pegs to hold dishes—which makes it easier for Max to lift them out—and even that closes quietly. Here, I'll demonstrate:


Sabrina had one request for the renovation: her own snack drawer. Sometimes, she lets me share her snacks. Sometimes. 


I had fun looking through Starmark's catalog of organization options, more than 100 strong. (Yes, this is my idea of a good time.) Our kitchen's main organizational theme had long been: Put it wherever it fits or wherever you feel like it. If you've ever heard someone shouting "Honey, where did you put the pepper mill?" it was probably me.

Pull-out spice rack
Knife insert—so they're not sitting around on the counter—plus a drawer organizer

One of the cabinets above the fridge has wooden slots for cookie sheets and cutting boards.

Wooden rack inside a cabinet—every little bit of storage space helps

My cutlery has never looked so sexy.

Is it weird that I've always dreamed of a pull-out garbage and recycling bin? 
We also got to customize the cabinet moldings and the table legs, and the latter was a bit of a head-scratcher—it's hard to envision how legs in drawings will look in real life. But you can't go wrong with a classic, and we went with Square Post Groove ones.


Surprises during a renovation are usually not a good thing. At first, we weren't sure what the story was with the cabinet to the left of the fridge. It covered a chimney, but we had no clue what shape it was in.


We needed to figure this out before we ordered the cabinets and we hadn't yet hired a contractor (Kitchen Intuitions does construction jobs, but we couldn't afford them). So I had a handyman come in and hack into the back of the cabinet. The chimney had stucco over it, he told us. We figured we could cover it up with sheetrock and decided to built cabinetry adjacent to it. But then, during the reno, one of the guys chipped away at the stucco. And lo and behold....

Brick!  
The old brick, repointed
I requested a utility cabinet to store a broom, a Dustbuster and our world-class collection of shopping bags.
Stand-alone cabinet (see: "every little bit of storage space helps.")
The bins, from Home Depot, hold toys, games, school supplies and eleventy billion erasers.
One thing became clear as we went through the renovation: You know best what works for your family. Also—as with most things in life—trust your instincts. The first design we received had the refrigerator placed where our new pantry ended up being, away from the stove and main sink. It would have looked great except it wasn't practical for us. And because I wanted to make the gallery area look as open as possible, I asked for the arched valance below the cabinets (thanks again, HGTV addiction).


The renovation took a little over six weeks, which was excellent timing—especially since the baby arrived two weeks later. The cabinets looked beautiful from the minute they were installed and fit everything we needed them to, plus some. Ten months later, they're still perfect.

For months after the kitchen was done, Max—who is typically not a fan of change—kept excitedly telling everyone he met that he had a new kitchen. All of us love hanging out there, and it's inspired me and Dave to cook more more. (Although make no mistake, I am still a big fan of takeout.) My favorite time to be there: late at night, with the cabinet lights turned on. I sit at the table with a glass of iced tea, my Astrud Gilberto station on and nobody arguing over homework, and it's truly peaceful.


In an upcoming post: how we chose the cabinet hardware, flooring, backsplash, appliances, sink fixtures and lighting, and other ways the renovation made the kitchen accessible to Max. 


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