Baby K’tan is my savior


I see everyone, everywhere set their toddler on their hips and walk around the store, park, house…I can do none of those. My CMT causes weakness so carrying him even to his room from the living room can sometimes be a challenge. The worst part is when I take him out alone. Our house is set into a hill, so just to get to the main level, I need to climb 13 stairs. I know it’s 13 because I count every time I climb or go down them—I think it makes it more doable to me and coaxes each foot to take its step.

It was hard at first to carry the bucket carseat with a not-so-small infant, especially as he added weight and fast. I would rest it on the step ahead of me and take it literally a step at a time.

But when he outgrew it, and we moved to the convertible Chicco USA NextFit, wow did my challenge grow! I found myself leaving everything in the car, in the garage because I could not manage one other thing except Jameson in what became a 20-minute experience up or down the stairs.

Then light dawned on my marble head: I use the Baby K’tan carrier around the house and in cafes, so why not use it to help me move him from one area to the next. It may not be what most mothers do, but it gave me a glimpse of feeling like I could care for my son without help until he started walking.

The first time was cumbersome in my small one-car garage trying to maneuver him from his seat to my carrier, but once I got it down, I nearly jumped for joy. So I may look weird in a parking lot hefting my 30-pound son into the carrier when other moms are carrying their kids, but I don’t care! It works for me and I am SO grateful to Baby K’tan for being a carrier without snaps or buckles that I can’t do. And for not being a 90-foot piece of material that drags on the ground and makes me feel like I am doing rhythmic gymnastics.

It’s a 2-loop piece of cotton that conforms to my son’s and my body perfectly, adjusts and is wash-n-wear. I love it and it has allowed me the normalcy of being a mom who can leave the house with her son without help!

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His first fever



So much for a chock-full-of-plans weekend.

It began Friday night as we waited for our seats at P.F. Chang’s at the Natick Mall with our friend. Jameson seemed sleepy, and didn’t want to walk around or interact much, but I chalked it up to being tired. Then, all of a sudden, he threw up all over my wife and the floor. It came on SO fast we didn’t know what was happening! Poor guy. (Not to mention embarrassing!) I thought maybe I just fed him too quickly before we left home, so we waited and finally sat down. By the time we ordered, he was snuggled into my wife’s chest and asleep. 

We enjoyed dinner and good conversation with our friend and eventually he woke up and played with our friend as I finished my dinner.

When we got home I gave him a “just in case” dose of Tylenol. I was trying to convince myself he was fine so we could continue with the weekend as scheduled, but deep down I think I knew he was not himself.

Saturday started crazy, as expected, with me rushing to Lincoln to get the museum pass for the New England Aquarium trip Sunday, then home to get my hair cut and colored. Jen met me with Jameson so he could get his hair cut and the minute he walked in, I knew he was sick. His cheeks were maroon and he could barely lift his head off her shoulder. Thea managed to do his cut while Jen held him and it came out nicely, but we decided Jen and J would stay home from Mary Catherine’s birthday, hoping he’d sleep off his fever for the aquarium.

No luck.

I returned from the birthday and called the doc. His fever was registering at mid-103 and I started the “parent panic.” She said he’s fine, give Motrin and call in 2 days if he wasn’t better. Annoyed that she was not worried, I did as she said. After an hour, the Motrin brought his fever down a point and he managed a small smile. But I knew the Sunday outing would not happen, sadly. 

I called and let Jen’s cousins know, then snuggled Jameson until he fell asleep.

Sunday turned out to be a PJs day, with his fever yo-yo’ing between 101 and 103. After a tepid bath, though, it seemed to stay at 101. As of this morning, it’s 98.6 and I am a happy Mama. But not before I broke into tears a few times. How awful to see your baby sick. And the panic part included me wondering if him falling asleep was him passing out because he was so lethargic. Ugh. Let’s hope that doesn’t happen again anytime soon.

Best thing ever was walking in to get him this morning and seeing him jumping and laughing in his crib. The fever—and panic—has passed!

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Big weekend for my bug


At 14 months, Jameson is at an in-between age in terms of what he can do and what he’ll enjoy.

We tried Southwick’s Zoo late last summer and he enjoyed what he could see from his stroller…until he fell asleep. Great zoo, though, and can’t wait to take him back this summer.

We tried the Enchanted Village at Jordan’s Furniture in December, but he seemed to enjoy seeing his older cousins enjoy the adventure more than the exhibit itself.

But we don’t give up easily.

Next up on our to-try list is the New England Aquarium this weekend. We’re meeting my wife’s cousin and her husband and daughter, having lunch at Durgin Park and making it an all-around playdate. The aquarium has always been a favorite of mine, so I am hoping it will be for Jameson, too. Not only do I have a $100 gift certificate to Durgin Park (thank you WROR employee of the day program), but I also planned ahead and snagged the only pass left for Sunday from the Lincoln Library. The pass lets 4 in for a very discounted rate—$10 per person instead of $25+! With the recent renovations to the aquarium, my hopes are high for a good visit! My only concern is finding parking that’s accessible to both the aquarium and Durgin Park that’s also handicapped.

The weekend kicks off, though, tonight at PF Changs with a friend. It’s a fav of ours because they offer healthier options, like brown rice, and a great kids menu that isn’t packed with junk! Also, even though it’s at the Natick Mall, there’s handicapped parking right outside, which makes me happy.

Jameson’s first haircut in the morning at D’Iorios with our friend Thea, then a birthday party for his cousin…whew, it’s a jam-packed spring weekend, but I’m excited! Can’t wait to report back on how it all goes! Happy Friday!

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The dreaded stairs…

Living in a progressive state like Massachusetts, you’d think I wouldn’t have to wonder about accessibility in businesses. But I have to remind myself that despite the progressive nature of the state, that buildings are old, steeped in history. 

That reminder, however, doesn’t help when you have legs that just don’t mix well with stairs. My CMT, while I push through as much as I physically can, does have its say in certain situations. A set of stairs is one of those situations.

When I showed up to meet a new client today in her Harvard Square office, the reminder of the CMT, the old buildings, etc., smacked me in the face. She told me she was on the second floor. Secretly I knew there wouldn’t be an elevator, but I was hoping.

The hope was lost the minute I buzzed myself in.

Immediately I was staring at the steepest set of stairs I’d seen in awhile. But I climbed them, one by one, lifting my heavy feet as best as possible: right foot slops up, the left drags behind it, the stair treads creaking as if to sigh as each foot lands heavily on its base. My white knuckles grasped the rail with my right hand and pulled my struggling body up, while my backpack slid noisily against my down vest. It was a heave-ho effort that repeated until I reached the top, 29 stairs later.

I stopped to give my strained leg muscles a break before pulling out my cell to find her suite number. 4. She emailed she was in Suite 4, to come in and sit in the waiting area and she would get me when she was free. Great. I looked around: Suite 1 was on my right. Suite 3 was straight ahead. Suite 2 was to the left, with Suite 4 just past it. I opened the door only to find another set of stairs.

I almost turned around, thinking with my backpack, pocketbook and my CMT there’s no way I will make it. Instead I took a breath and one step at a time I heaved my right then my left foot on to each step. I leaned into the wall on which the bannister was mounted and leveraged my way up the stairs, all the while praying she didn’t come out early to greet me before I made the successful climb.

I found the otherwise uncomfortable gray plastic chairs in the waiting room a comfort to my now-strained, somewhat Jell-o-y quads. Instead of quitting or asking why she didn’t have a more accessible office, I reveled in my success. I also thanked God I didn’t have to lug my son up the stairs with me and that there was a railing. Even one step without a railing could send me falling.

Glass half full? How else can I get through life as a disabled mother successfully?Image

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Dear Target…


Dear Target: We use Charlie Banana cloth diapers during the day for our son, but at night, because he is such a great sleeper, often sleeping 13-14 hours at a time, we use disposable diapers. Pampers are expensive, so a few friends recommended Target brand.

At first glance, they seemed OK. Not as solid as Pampers, but we thought they’d do for our limited needs.

Boy were we wrong!

With my Charcot Marie Tooth disease, I have trouble grasping things and have no strength in my hands roughly from the tip of my finger to the first knuckle with which it intersects. This makes grabbing small items nearly impossible. Small chores such as opening a water bottle, zipping a zipper or tying shoelaces can’t be done without help. But diapers have never been an issue—the Pampers tabs are always big enough for me.

The Target ones, however, showed me that it’s not the tabs that make it doable or not, it’s the material underneath the stickiness. The Pampers allow me to adhere the tab on one side, then the other, then go back to readjust. The Target brand diapers don’t have special material under the tabs that make it easy—or in some cases, doable—to adjust the diaper once it has been fastened the first time.

The first diaper I used turned into 5 because I kept ripping the material trying to undo it. It’s not easy, you know, to change a 14-month-old’s diaper! He squirmed so much, it was nearly impossible to put a disposable on him, so I used cloth and got up in the middle of the night to change him—something I don’t feel I should have to do.

Bottom line is I learned my lesson: cheaper isn’t always worth the hassle!

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A revolution is headed my way!

I won’t lie: if I’m home alone with my son, and all of his outfits without zippers or buttons are dirty, chances are he is being dressed in feetie pajamas or his fly will not get zipped up!

With the CMT, my fingers don’t always work well enough to zip up a pair of pants on the squirmiest 1-year-old this side of the Charles River. I’ve often wondered when those with disabilities were going to be considered when clothes and other things were designed. Finally, though, we have the potential for me to never again have to say “Honey, can you zip this for me, please?”

A woman and her son went on a mission to design a zipper a family member with a form of muscular dystrophy can use. And after 100 prototypes, they found one, using magnets to guide the contraption.

The best part? Under Armour is going to use the zipper by the end of the year! Such great news and so good to know someone is thinking of the minority!

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Zippers only, please

Baby Gap clothes, while cute, are not functional when you have a disability and/or a squirmy baby.

Baby Gap clothes, while cute, are not functional when you have a disability and/or a squirmy baby.

To the person who created baby clothes without zippers or Velcro: Do you hate me? Have you never seen a squirmy baby? Or a mother whose hands don’t work very well because of her disability? Methinks the answer to all of those questions is: no.

I think you are a childless person who simply designs “cute” clothes. That’s fine for some, but can you be considerate and make others that those of us who fit in some or all of those categories not feel inadequate or anxious when attempting—and failing—to change our kids.

The worst offender? The Baby Gap. (see photo below). Not only do they not have zippers, they have teeny, tiny buttons. EVERYWHERE—the crotch, the waistline. Even along the shoulders. It’s amazing that a baby hasn’t choked or a mother hasn’t gone off the deep end attempting to clothe her child.

The other Gap problem is the jeans. They actually have a button and fly—for infants! Amazing.

The other clothiers, I believe are just falling into the snap craze. Carter’s and The Children’s Place—neither have zippers often. When they do, I snap them up, but it’s rare.

Target has zippers and I was so excited to find them—until I realized they are top-down zippers and need to be actually put together to zip. Pretty sure I would be able to snap an outfit quicker than I’d be able to zip one of their outfits, and that’s not saying much.

I unfortunately didn’t notice this style zipper until I was out with Jameson one day when he peed through his morning outfit. I grabbed my backup outfit—a Target zippie with stripes. How embarrassed was I when I realized I was never going to be able to get it closed properly. I assessed my options: leave him in just a diaper; put the outfit on him, but not zip it; put his wet clothes back on him; or ask for help. Like that’s not embarrassing, but it was the only feasible option. Hi, I’m a mother of a boy and I am not capable of dressing him without my wife here. Can you help? I had some choice words for Target that day, but unfortunately they will never be heard as fashion outweighs form even in infant clothing.

The unfortunate thing is that I am limited in what I can dress my own son in. I just wish I had choices.

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