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Wednesday, December 19, 2012

Jumble

That's a fun word. Sounds made-up. But that's the perfect word for this post. I've got limited time and lots of thoughts. It's gonna end up a big jumble!

Thought 1:

My Cover and Profile pics on Facebook needed changing. I wanted to highlight Max, but also let people know it's actually me they are looking for. Here's what I chose:

I like Max's smile in this one, and I don't have a double chin!

Thought 2:

Pregnancy is making my brain soft. My ability to concentrate has evaporated. I have a backlog of essays to read, boxes to unpack, Christmas cards to address, Christmas presents to buy, emails to delete, friends to greet, and posts to write that could keep me busy until the cows come home (which, for some reason, means a really long time).

Thought 3:

I'm experiencing two conflicting pregnancy-related phenomena. The first is the desire to nest, which is very timely considering we recently moved. The other is related to Thought 2. Hormones are making my brain soft, so after I have spent the day wrangling teenagers, writing and performing engaging lessons, and attempting to spend quality time with the beautiful boy you see up there, I am seemingly paralyzed. Sometimes it's fatigue, but most of the time it is an in ability to organize my thoughts into a coherent plan. Frustrating.

Thought 4:

I don't like being a working mom. Don't misunderstand me. I like being a teacher. What I would prefer would be to stay home and care for my child(ren). Not that I would LOVE that instead. It's more that I wouldn't feel this work-related stress everyday, have to drive 35 miles to work at 5:30 am, and feel like I had a little more time for Max.

Thought 5:

Sometimes I don't feel motivated to post anything here at My Boy Max. I usually have to stay up late to do it, and then that impacts my ability to drive 35 miles at 5:30 am the next day. And then Sean had his annual Christmas party on Saturday night, and several people told me that they love to read the blog. One of the guys even got tears in his eyes as he talked about watching the video of Max turning his walker. I was really moved. That's why I wanted to make sure I posted something this week, even if it is a jumble.

Thought 6:

I've gotten a bunch of test results back. First, it seems that I had fifth disease as a child (bloodwork shows old antibodies) so there is no danger of my little baby becoming infected. Phew! Second, the final results of the sequential screening came back and are as follows: neural tube defect = 1/10,000 (awesome), trisomy 18 = 1/10,000+ (really awesome), Down syndrome = 1/600 (really good). I feel relieved by those numbers, but when compared to 1/10,000, the 1/600 isn't quite as impressive. I've got a level 2 ultrasound scheduled in three weeks, so I'll get even more information then, but I'm leaving the possibility of an amniocentesis open. I like information, so if I continue to question the results, regardless of how good they appear to be, I may go for it. That way I can either put my concerns to rest, or prepare for what will be coming.


Monday, December 3, 2012

Plateaus

That's a funny-looking word in its plural form. I'm not sure I've ever seen it that way. It almost looks wrong. Perhaps it's one of those silly words whose plural ends in the letter i, like octopi.  Probably not. 

I'm not talking literal plateaus, here. Not those raised, flat landmasses you can find out west, or in Australia. I'm talking about those plateaus we encounter as we learn. I see them often among my students. They progress so nicely, and then they just level off for a while. It can be frustrating because no amount of effort seems to help, until one day it does. 

Children do this too. I imagine it seems pronounced in children with Down syndrome (and probably those with other types of delays) because the plateaus last longer. Max's most significant recent plateau has been walking.

I (naively) had my heart set on Max walking by his birthday. This summer his improvement was lightening fast. And then I went back to work, and he went stagnant. His interest in walking waned. His ability to take several independent steps atrophied. I was discouraged, especially knowing that as my pregnancy progressed, carrying a 30-lb toddler would become more and more difficult. I started to imagine the types of super-hero moves I'd have to learn to get a non-walking toddler that has decided to go boneless, and a newborn, across a busy parking lot, or up the stairs, or even just around the playground. As you can imagine, they all involve giant, rock-hard biceps and a midriff to rival Wonder Woman's. 

And then, last Thursday, this happened (captured on my cell phone): 

video

Max's walker has fixed wheels so that as users begin to walk they don't lose their balance if it turns from side to side. As you can see, the walker needs to be picked up in order to turn, which until Thursday, was always our job (or that of our feet when we got lazy). I'd never seen him turn it on his own before. 

Max's signing has also blossomed in the last few days. Today I saw him imitate Rachel on Signing Times as she signed "imagination." He did it twice. Then he signed "No!" right back to me when I scolded him for throwing his plate. Nice job, buddy. I'm so proud!

Quick pregnancy update:

Yesterday I felt the baby move for the first time. Since that first flutter, I've been feeling movement several times every hour since. This is a feisty one!

And most importantly, I had my second blood test today checking for changes in the antibodies against parvovirus B19 (fifth disease). Any change in numbers would indicate a current infection and kick-off a series of tests and observations to see if the baby is infected. (See previous post for more details.) I expect to have results by Friday. Thanks for all of your support and well-wishes. You have helped me remain calm and collected, which in turn has reduced my stress level. I'm feeling confident that everything is fine.



Monday, November 26, 2012

Feeding and Feeling Sick

This post is another two-parter. I haven't fully gotten over my fatigue yet, so it's been challenging to get online after Max goes to bed. Most nights I just crawl under the covers so I can get enough rest to wake up at 4:30 the next morning. There are so many posts that I've promised. I've got to catch up somehow.

On to the meat and potatoes (so to speak) of this post:

Part One

Max is only now beginning to feed himself foods that aren't easily held in the hand. Utensils aren't really a part of his life yet (no real interest), so feeding himself foods like applesauce can be tricky. Admittedly, I've been slow to push the issue because of the mess that inevitably results. I've finally realized I've got to get over it, and so Max has recently had several fun food adventures. Here he is the other day feeding himself applesauce.




That was a several paper towel clean-up.

Picky-ness has been an issue as a late, as well. Max has a handful of things he likes, and refuses most others. Needless to say, eating what Mom and Dad eat has been out of the question. You can imagine how thrilled I was tonight, then, when Max ate the tiny bison burger I made him to match mine. I figured, hey, just for that, why not let him indulge in a cupcake.


Clearly enjoying himself and signing "more."

Satisfaction 
This was a full bath clean-up. He got that cupcake up his sleeves, on his belly, even on his toes!

Part Two

In my previous post I talked about my then upcoming sequential screening and ultrasound. I was worried because that was the appointment that changed our lives the last time. Well, I'm pleased to announce that so far, there appear to be no genetic abnormalities. The sequential screening came back normal.

But as life goes, you relieve one stress and another takes its place.

About 10 days ago Max was diagnosed with fifth disease (parvovirus B19), also known as slapped-cheek disease for the brilliantly red rash that colors the cheeks. If you haven't heard of fifth disease, its one of these common childhood viruses that is annoying but not dangerous, and for which there is no treatment.

It's not dangerous for Max, but it turns out it is dangerous for me...or rather for the little baby taking up residence in my belly. Initially, I had a vague idea of the complications associated with fetal infection of fifth disease, but I wasn't worried until my OB called on Friday to say that my blood showed the presence of parvovirus antibodies.

So what does that mean? Best case scenario, that means I was infected at some point prior to now, and am now immune to present or future infection. There is no danger to the baby. Worst case scenario, this is a new infection that could affect the baby.

The next logical question, of course, is how does it affect the baby? According to a number of online medical sources, parvovirus B19 causes fetal anemia. The increased effort of the heart to move enough oxygen-rich blood through the body then causes hydrops fetalis. What? Basically, that means that pockets of fluid develop inside the fetus in places they ought not to be. This can ultimately lead to heart failure and fetal loss.

So, can it be treated? Well, yes. In some cases intrauterine blood transfusions are performed. In simple terms, they perform a transfusion (or multiple) on the baby while still in the womb.

All of this information comes from a number of medical websites online, the most significant being that National Institute of Health. Unfortunately, rates of infection, fetal loss and successful treatment vary across sources.

I'm experiencing a lot of stress right now. One of my girlfriends experienced anxiety-inducing complications during two pregnancies. She advises me to assume everything will be fine. Power of positive thinking and all that. I think she's right. Worrying gets me nowhere. Unfortunately, it's one of those things that is difficult to control.

Anyhow, I'm going for additional testing in a week to determine if the infection is old or new. Those results can change the course of this pregnancy.

I'd like to make a request. If you pray, will you pray for our little baby? We'd really appreciate it.

Monday, November 12, 2012

Double Post


Two years old. Grown-ups always said that the older one gets, the faster time flies. Well, now that I'm a grown-up with a 2-year-old, I'll add, once you have kids, time goes by in flashes. And it really feels like that. Mixed up with the murky, half-formed memories of everyday life, I've got vivid, larger-than-life images of memorable moments in my--our--life with Max. Like, the first moment we Max in ICU after his heart surgery. His bright red, screaming face the first moment we met him, two years ago. The smile that spread across his face the very first time he tasted a cupcake. That backwards glance he always gives just to make sure someone is behind him before he sets off up the stairs.

I think for each of his birthdays I'll have a moment or two of melancholy, or nostalgia--not sure which. It'd probably unavoidable. But before I get carried away, here are seen from the birthday party yesterday.


Max's cousin Nicholas and his Auntie 'Cole.

Enjoying the snacks.

Max joined by Mommy and Daddy (and Caetano) for wish-making time.

Both Grandmas.

Mad rush for candy after beating the pinata senseless.
 This was the year for noise-making birthday gifts. Here Max demonstrates his skill on the triangle--a gift from Grammy and Papa--while Papa holds it up.


It really was a wonderful day. And I'm thankful that I didn't have to go to work today. One full day preparing for the party, and one full day having the party is enough to make a pregnant woman collapse. And collapse (figuratively) she did. Oh, and I'm referring to myself.

Yes, I am pregnant. Today was the first day of my 12th week. I was so hoping that, like they did with Max, my fatigue and nausea would disappear in a flash. Alas, they did not. Oh well, there's always tomorrow.

Big day tomorrow. I'm having the first of two sequential screening's and the ultrasound that measures the nuchal translucency.

FLASHBACK:
Last time we went into this appointment without a care in the world. "Of course our baby is fine!" But a few days later our world came crashing down around us. My OB called on a Friday afternoon to tell me that our baby's chances of having Down syndrome were 1 in 10.

1 in 10. That meant that for every 10 women with the same measurements as mine, one of them had a baby with Down syndrome. That also meant that nine of them did not. Of course, these sorts of things only happen to other people, so the baby would be fine.

It turns out, we were those other people. I was the one.

We elected to have a CVS the following week. At the same time, they performed an ultrasound to measure the growth of the nasal bone. The specialist who did the ultrasound found the nasal bone, and perhaps, regretfully, gave us hope that the results would all come back "normal". We received Max's official diagnosis a few days later.

PRESENT DAY:
Unlike with Max, where I felt certain during the entire first trimester that something was amiss, I have felt at peace and confident about the health of this baby. Perhaps it is simply knowing now that a diagnosis of Down syndrome is not the end of all things. Or, perhaps it is a mother's intuition signalling that in fact, all is well in babyland.

That calm disappeared two days ago when I realized that I will be able to read the results of the nuchal translucency on the screen as it is performed even if the tech refuses to give me any information. Max's measured 2.9mm, which is at the high end of normal. What if this baby's is higher?

I'm not afraid of having another baby with Down syndrome. Max has improved my life by leaps and bounds. I'm afraid of the feelings I will have if the baby is diagnosed with Down syndrome. I don't want to feel the devastation that I felt 2.5 years ago. I don't want to experience the sense of loss and grief that overwhelmed me. I don't want to be on the phone with my sister-in-law, unable to ariculate a single word as she calls out, "Amy, breathe, breathe." I don't want to sit in my car in the driveway, screaming at God, in blood-curdling wails, for this diagnosis...this diagnosis that was ruining my baby, ruining my baby's face.

Now, this is how I felt months before I met Max, and realized that he is the perfect, most beautiful son. He is exactly who he is supposed to be. Down syndrome didn't ruin anything, it is a part of him. It has done nothing but enhance our experience as parents and I wouldn't change a single thing.

But the thing is, emotions come unbidden. They are difficult to control. When they are intense, they are difficult to experience. Even though I know Sean and I are strong enough to weather whatever these tests may reveal, I can't help but hope that they reveal nothing. Nothing at all. That they predict an uneventful pregnancy, and a healthy, typical baby that Max can help us care for. I'd like to have that experience.

Thursday, November 1, 2012

Halloween!

Wow. This was Max's first Halloween! I mean, he was around for Halloween last year, but come on! he wasn't even one! We dressed him in a costume that he hated, took a couple of pics, and then put him to bed.

This year was the real deal. Max's favorite animal is a monkey, so there wasn't anything else he could be. I went all out and bought a ridiculously-priced costume, but boy was it cute!

For the life of me, I couldn't get a good picture!

First, too much monkey face...then not enough!


So I enlisted Grammy's help. Her first try, pretty good.


Her second try, even better.


But, as they say, the third time's a charm! 


Don't you love it?!

Anyway, being my first Halloween as a mom, and in a new neighborhood, I felt a little bit like a fish out of water. At 6:00 I started looking out the windows, waiting for the first sign that the little ones were ready to go. I mean, aren't they supposed to trick-or-treat while it's still light out? Nothing. "But it's New England. It gets dark early!" And dark it got but still, nothing. Then around 7:00 I finally saw the first brave souls.

We ventured out together, the three of us, our little family. It felt a little funny carrying Max to our neighbors' doors, almost two years old but looking more like a giant one-year-old. But any discomfort I felt melted away as Max laughed, waved, hollered and had a grand old time. It was good, old-fashioned fun. I can't wait to do it again!

Thursday, October 25, 2012

The R-word

Ann Coulter has been a hot topic in the Down syndrome community for the past few days. If you haven't heard about it, Ms. Coulter, in her typical confrontational and abrasive manner used the
r-word in reference to President Obama in a recent tweet. Outrageous!

The r-word, once used to describe the delays that intellectually disabled individuals experience, has become a derogatory term in contemporary American usage. As languages evolve, so do the meanings of words. Let me illustrate this point with another controversial English word: gay.

Once upon a time it meant happy. Then it's meaning changed, becoming a synonym for homosexual. The homosexual community's acceptance of the term helped to diminish any intended insults through its use. And then, somewhere in the 1990's it's meaning changed again. Teenagers aggressively adopted the word and used it to mean "stupid." I still hear it used by some of my students today, and expressly forbid its use in my classroom.

The r-word is also banned. I include the following statement in my expectations sheet that every student receives on the first day of class:

Be considerate and respectful of the rights and feelings of others.... Most importantly, this includes refraining from using language that is offensive to others. Language that is considered racially, culturally, intellectually, sexually, or socially inappropriate will not be tolerated.
I add to that the explanation that no one knows the life circumstances of the people around them. A simple, seemingly innocent statement could be very offensive to people nearby. Then I show them a picture of my son--it typically elicits several "aaaaaaaw's" from the girls in the room--and ask them, "Did you know my son has Down syndrome?" "He does?" they say. I continue, "He does, and imagine how I would feel if you used the r-word in class to call someone else 'stupid?'"

I rarely hear any derogatory words in my classroom. Most people, even teenagers, want to be respectful.

So why doesn't Ann Coulter want to be respectful?  I'd like to give her the benefit of the doubt that somewhere, deep inside, she doesn't really mean to offend the thousands of us in this country who have, or have loved ones with Down syndrome. Has her television persona become so fused with her true self that she is no longer able to see those lines she ought not to cross?

Shame on you, Ms. Coulter. The character you play thinks nothing of the feelings of others. Could that, perhaps, be your true character after all? How can you hold any of the people you criticize to high standards when you yourself do not reach them, or appear to even attempt to do so? Perhaps your public persona will not permit you to apologize for your missteps, but I hope that you learn to understand that what you say can hurt others so much more than you will ever know. There are quite a few people out there who look up to you. You should be a good model for them.

Sunday, October 21, 2012

We're Moving

I wrote this last night with every intention of posting it until I realized I had no way to get the photos and movie off my Mac and onto my mother's iPad. Better late than never.

So for the last two weeks, give or take, we've been moving. Sean, bless his heart, is trying to save us money. So, since we are staying in the same town, rather than hire movers, or even rent a truck, Sean has been passing out beers to whichever friends take the bait in exchange for moving as many things as possible in about three hours a night. The only limitation is that everything must fit in our minivan.

During that first week I was so whipped after working all day, playing with and feeding Max, and helping with the move, that  let's just say there was nothing left to create a post even remotely worth reading. I didn't wanna torture y'all. Then this past week we've spent our nights at the new place since more of our stuff was here than at the old place. BUT, we still don't have any Internet connection. My lovely mother was kind enough to lend me her iPad tonight so I could make this quick post. (No, I haven't forgotten about the Buddy Walk, but it'll have to wait so I can do it a little more justice.)

So, on to the star of My Boy Max.



Moving is exciting when you are almost two! There are all kinds of fun things to get into. The best of them all is the mountains of packing paper that Grammy lets fall to the floor. Do you remember when the simplest thing brought the greatest joy?

I call this, " Fun with Paper."


video

BTW, that's Grammy in the background.

Saturday, October 6, 2012

A Mix of Stuff

Tonight's post is a bit funny (funny weird, not funny ha-ha). I don't really have a theme. Just a few things I'd like to tell you about.

On the Farm

First, somehow during the first few weeks of this new school year these photos didn't get posted. Shame on me! Quick background info: In September, my dad's financial company had a client appreciation day at a local "farm." I think it was probably a farm once upon a time, but now it's more like a fun-park. There's a petting zoo, driving range, batting cage, arcade, beach volleyball and bumper boats. It's pretty fun, especially if you're a kid.

That's my nephew, AJ. He's on the left, and very competently driving that magnificently purple bumper boat.
And here he is again, letting that volleyball know who's boss. It wasn't long before my dad joined the game.
Hey, look at that. Twins! Max didn't appreciate being left out, and soon made his way onto the court.

The binky helps to prevent Max from shoveling fistfuls of sand into his mouth. He's strangely obsessed. Needless to say, we don't spend much time in the sand box, especially in public parks. You never know how many cats have passed through in the last few days.
And finally, a snuggle with Papa.


Doggy Kisses

We don't have a pet right now. When Max was born, Mitchell, my fifteen-year-old cat was still with us.
Max was fascinated with him. Mitchell was fantastic with children, resigning himself to the smacks and tail pulls, never swatting or hissing even once. Last Halloween he wandered off and never came home.

Sean has a cat, Mo, but she's rarely here. She's quite a hunter, and fends for herself most of the time. We really only see her when it rains. Cats and water, you know. She's not quite as good with children as Mitchell, so I try to keep Max away from her when she's here.

My brother, Andy, is a dog guy. He keeps Jack Russells. Right now he only has one, Roxy. Like all Russells, she's got energy to spare.  Since Max doesn't get much exposure to animals at home, he spends our visits to Andy's house chasing Roxy down. She loves it!
Here's AJ, just a couple of weeks ago, helping Max to keep Roxy from smothering him with kisses, but...
...Roxy won.




World Record

Max is officially a Toddler. That is, he has finally made his complete transition from the Infant room to the Toddler room at his daycare. (We--mostly me--have been a bit slow to make the move.) When I picked him up on Thursday I discovered that Max had achieved a world record!
If you look closely you'll see that Max read two books to win the record: Ladybug Girl and Bug Squad. Way to go!

To the Max

Tomorrow is our Buddy Walk. We're really excited! To the Max is $95 short of our team fundraising goal of $1500. Not too shabby. It's a big improvement over last year, and next year we'll go even bigger! All week long, The Weather Channel app on my phone has forecasted rain, but right now it's predicting just clouds. Let's hope those weather people are right!

It's gonna be a great day no matter what the weather. Lauren Potter, from Glee, will be there. And just a few days ago they announced that James Massone, that likeable kid from Boston on last year's The Voice has agreed to make an appearance.

The celebrities are fun to see, and they bring a lot of publicity to the event. But tomorrow is about more than that. Tomorrow is a day for people with Down syndrome, their families and their friends to be seen and acknowledged. It is a day for the world to see our loved ones as competent, contributing members of society. It is a day for all of us to show the world just how important our children with Down syndrome are, not just to us, their families, but to the world at large. Their presence in our lives teaches us compassion and empathy. We learn to accept, feel comfortable with, and value what is different. We become better people. Isn't that what really matters?

Monday, October 1, 2012

Happy Down Syndrome Awareness Month!

It's October 1, which means we have 30 more days to acknowledge and celebrate our friends and loved ones with Down syndrome. What an opportunity!

A Unique Magazine

To kick of the festivities, Unique Me Magazine, a brand new publication out of Miami, FL intended to "raise awareness of ALL types of 'unique' needs; and provide information and inspiration to 'unique' families" sent me their second ever issue.

On the cover is a beautiful picture of Kelle Hampton's girls. (The Hampton family is one of my favorite celebrity families blessed by Down syndrome.) What a sight! And the mag has devoted two whole articles to DS. Tonight, after Max has gone to bed and I've finished enough correcting of student papers to feel comfortably prepared for tomorrow, I'll curl up and read two articles: "What is Down Syndrome? It's Not as Limiting as People May Think," (I'll write about any interesting or inspiring nuggets in a future post) and "A Mother's Story: Down Syndrome Gives Family a Chance to Bloom," highlighting Kelle Hampton's memoir, Bloom, about her first year with her daughter.

To the Max!

It's thrilling that a group of inspired and resourceful people have put together Unique Me Magazine. How can it get any better? Well...

The Massachusetts Down Syndrome Congress Buddy Walk takes place this Sunday in Wakefield, MA. Hundreds of people will gather to take a leisurely three-mile walk around the lake, have a yummy picnic, and enjoy the show, which this year is an appearance from Lauren Potter who plays a recurring character on the hit show, Glee.

We did it for the first time last year and vowed to participate in all the years that follow. There is so much positive energy and a tremendous sense of community. You really need to get involved. But if you can't do the walk, please donate. The proceeds go to the Massachsuetts Down Syndrome Congress, self-described as the "Premiere resource for Down syndrome information, advocacy and networking in Massachusetts."

Thanks to all of you have already donated. I've personally raised $355 of my $500 goal, and our team, To the Max, has raised $1,160 of our $1500 goal. Just a little more and we'll be there!

Max and I can't wait to see you there!


Wednesday, September 26, 2012

Lots of Changes

Life has been busy in our house. In my last post I talked about our change of routine now that school has started again. Well, in addition, we have just found a new, beautiful place to live. My mom is stopping by today to help me do a little packing. Thanks, Mom!

At 22 months, Max is changing right in front of our eyes. Check out the following list. My photography skills are not good enough to catch any of the moments on camera so you'll have to use your imaginations.

  1. Eating with a fork. Mostly just stabbing, but occasionally getting the food into his mouth.
  2. Signing. I plan on writing in more depth about this soon, so let me just say that communication alleviates a lot of frustration!
  3. Eating new foods. Max got into a rut and would only accept of very few number of foods. He is suddenly eating things like fresh apples and hamburgers. 
  4. Standing without support. He usually does it several times in a row, but of course I never have my camera nearby.
  5. Walking. Max still uses his walker, but lately he has been letting go to take a few steps to Sean or I.
It's all so exciting!

Now, a quick phone pic:


He's in the elevator at the mall in one of those life-saving (and probably germ-infested) carts. See, my mom and I went shopping last Saturday and took her car. Just as we pulled into the parking garage, Mom turned to me and asks, "Did we bring the stroller?" I instantly deflated. Of all the stupid things we forgot to bring the stroller, and were now faced with carrying a 27 pound dead weight (Max doesn't help hold himself up. I assume it's the low muscle tone).

Well, that's exactly what we did, and tired ourselves out along the way. Then, just as we were leaving, a man walked by us with this cart and said, "Do you want this? I don't need it anymore." And that's when we saw them: a whole line of carts just waiting to save silly, forgetful parents. If only we'd seen them sooner! Max, as you can see, thought it was just about the coolest thing he's ever seen!

Wednesday, September 19, 2012

So Sorry I'm Late

Changes in routine are hard. The start of this new school year has given whole new meaning to the word, "tired." I'm really struggling to keep on top of things both at work and at home. As a result, My Boy Max gets pushed to the end of the list. I need to make it a priority because I feel so good after every post. In a way it's cathartic. If that's too big a word, then it's stress-relieving and relaxing.

So I don't have a lot of time right now, because I've got to get a handle on all that stuff that's piling up, but I wanted to show you a handful of relatively recent pictures. Please enjoy! And I'll be back with gusto really soon.












Wednesday, September 12, 2012

Too Cute!

Okay...I know, I know. It's been way too long. I'll save you the sob story and just say that since going back to work, being tired has taken on a whole new meaning. So, to make up for lost time, I offer to you a list of some of the uber-cute stuff Max has done recently. But beware, your cute meter is about to overflow.

Hugs and Kisses

On Monday, Sean and Max were waiting for me at the front door when I got home from work. What a fabulous sight!

After scooping up my boy in my momma bear hug, Sean squeezed in. Max loves group hugs! Then when Max seemed satisfied with our communal squeeze, Sean and I leaned in for a quick hello peck. Honestly, I didn't even think Max noticed, but when we separated, Max grabbed the backs of our heads and pushed them back together for a second kiss! Awwww...

Pew!! Stinky!

Last night, while Sean and I enjoyed the Red Sox defeat of the Yankees at Fenway, Max had a sleepover at Grammy's. It seems that Max consecrated the visit with a sizable deposit in his diaper. Well, of course Grammy came to the rescue, but she did not hesitate to express her mild disgust at the, uh, fragrance that wafted her way as she disposed of the goods. "Pew! Stinky!" she said, to which Max replied, "Stinky!"

That doubles the size of Max's vocabulary which was previously comprised of the single, but important word, "eat."

Mmmm... Cream Cheese

On a recent Daddy babysitting day, Sean went to Dunkin Donuts and got himself a bagel with cream cheese, and was promptly disappointed that they put the cream cheese on it for him. What a rookie! At least now he knows to ask for it on the side.

Well, back at home he set up camp in the living room, and left the bagel open on the coffee table while he went off to the kitchen for a drink. When he came back he found his bagel on the floor, and a happy toddler covered head to toe in cream cheese. Again, what a rookie!

"Oh, No You Don't!"

Sometime over the weekend we are all hanging out in the living room. Max did something he shouldn't have, but try as I might, I just can't remember what. It doesn't really matter though, cuz the good part's still coming. Anyhow, whatever it was, I remember that it warranted a stern reprimand, which Sean delivered along with the ASL sign for "No!" (Hold your thumb and first two fingers out and facing away from you. Now touch all three tips together, release, and repeat. You've just signed "No!") Max was having none of that, and responded with a very aggressive and enthusiastic signed "No!" He told him!


I picked on my lovely husband a little bit in this post, so here are a few pics of him being a great dad:




And finally, this video of Max taken back in June but never posted because I forgot about it!

video


Thursday, September 6, 2012

Stand and Deliver

A little high & mighty maybe, but teachers will certainly know the movie I've so shamelessly used as today's title. It's a terrific film about a teacher in L.A. who inspires his at-risk students to take and pass AP Calculus. It stars Edward James Olmos, and you'll see a very young Lou Diamond Phillips.

Okay, okay, so it's over the top, but a mother is entitled to feel proud when her 21-month-old toddler with Down syndrome stands up from a sitting position in the center of the floor with absolutely no help whatsoever. Not a stitch.

Apparently, I missed his first successful attempt last weekend. He was hanging out with Grammy while Sean and I went away for the night and stood for her. Grammy was very proud, but I felt, well, gipped! So you can imagine how thrilled we were when he did it again so enthusiastically on Tuesday.

This impressive accomplishment was unexpected so we obviously did not get a pic. However, let me entertain you with some pics of Max practicing his standing during out trip to Cape May, NJ last month.

Enjoy!

Hee, hee.
Downward Dog.


Celebrating with Grammy.




Monday, September 3, 2012

It's Back...

Croup. Ugh. It reared its head again last night. We'd been croup-free for more than eight months, then last night at 1:00 am Sean and I both heard the stryder.

Within seconds we sprung into action. While I located and assembled the nebulizer, Sean filled the bathroom with steam. We don't use anything medicated in the neb, only saline, but since our shower heats up slowly, the added moisture helps to clear Max's airway more quickly.

Five minutes later, we all headed outside to shock Max's airways with the cold night-time air. Sean, in his perpetual mission to lighten the mood, stood in the road under the street light and juggled. Max loved it.

With his Down syndrome, Max has a narrow throat, so cold viruses that cause inflammation usually lead to croup. Those same narrow passages make it take a little bit longer for the croup to clear, so last night we repeated the steamy bathroom and nebulizer, followed by a few minutes outside.

By then, Max's airway had cleared enough for him to breath normally, so the next step was a dose of prednisone.  Max tends to spit out meds, so we usually put them in his milk.


It's incredible what a year's worth of experience can do. Last night we were all calm and collected. It was more like a middle of the night family reunion than a medical crisis.

 
But a exactly a year ago, it was a totally different story.

Flashback:
We'd never experienced croup, so when Max woke in the middle of the night with stryder we all panicked. We piled into the car to go to the hospital, but the twenty-minute drive was more than I was willing to tolerate. I kept having visions of my baby passing out in the back of the car, so I made Sean stop at the fire station a mile and a half from our house. The firemen were great and took us to the hospital by ambulance.

Our first croup episode on Labor Day weekend 2011. A huge contrast to last night's calm adventure.
As you can guess, Max was fine, but as new parents all we could do was what we thought was right. Max's pediatrician commended us for our quick action, but assured us it would have taken a long time for Max to reach critical condition. That wasn't very reassuring at the time, but a whole year and a dozen croup episodes later, that assurance helps.

So now, to quote Sean, "We got this."

Monday, August 27, 2012

The Last Night

I'm working through motherhood. Hmmm...I think that  double meaning is intentional. At this moment in our lives, we cannot live in Massachusetts and sustain our lifestyle and plan for the future on Sean's income alone.  Entering my second year, I still don't know how I feel about it. Dozens of conflicting feelings boil and bubble in my gut. At times, I feel empowered, fulfilled, progressive. At other times I feel sad, slighted, even weak.

Last year was hard. I woke up at 4:30 am every weekday to drive almost 35 miles arriving at working by 6:00 am. I prepped my classes until 7:20 when the school day began, and kept my nose to the grindstone until 2:00 pm when the students left. One more hour of prep time allowed me to leave at 3:00 pm to pick up Max before 4:00. Dinner around 5:30 pm followed by floor play and books, a quick bath and a bottle. Max was in bed at 8:00.

No time to relax. Had to clean up the dishes in the kitchen and the toys in the living room. Lunches for me and Max had to be made. Perhaps a little bit of computer time, a quick scrub of the bathroom or a pass of the vacuum.

I was often in bed but not asleep when Sean arrived home at 10:00. We didn't see much of each other because he also worked weekends so a precious hour or two before sleep was worth the fatigue the next morning. This year looks to be marginally better in that respect, but we still won't have weekends together.

As a result, we parent fairly separately. Communication happens through notes on the counter, text messages and short phone calls. We have to make special efforts to see each other. Thank God for the summer.

I have high hopes that this year will be a little easier, not because our schedules are better--they're not--but because we are used to it. As much as I wish that Sean and I could be Max's sole caretakers, I do think that daycare is good for him. I have to believe that seeing all those other children moving around and doing things he has not yet mastered serves as strong motivation. His teachers are wonderful and the center is very accommodating. Max is clearly a favorite there.

But I wonder if Max misses out on anything because he isn't with one of us all day every day. I'm sure there are many working mothers who wonder the same thing. Am I depriving my child of the best possible upbringing he could have? Or will he be better adjusted than some of his peers because he has been spending time with others since he was nine months old? I have to hope so. I have to believe that we are doing the right thing. We would never knowingly do anything to Max that would compromise his well-being.

I think stay-at-home mothers are lucky. I envy those mothers who are plugged into a network of other mothers. It's sort of a built-in community. As a working mother I feel excluded from that life. I feel it most in the summer when I am home with Max. People say that it gets a little easier when the kids get to school because parents meet each other through their kids. While a don't want to rush Max through this beautiful time of discovery and learning, I am looking forward to his school days and the opportunities it will offer to both of us.

I know you wanted to see pictures of Max. I've got many, but today, on this last night of summer, I needed to unburden myself of these thoughts. This is my public diary entry. If you've gotten this far, I thank you for reading it. Maybe it will help me sleep better tonight that I have for the last few. A purging of sad thoughts and a good cry can do that.

Thursday, August 23, 2012

Fun with Friends

Recently I wrote about feeling like a bit of an outsider in my town, and that awkward, uncomfortable feeling that comes when a stranger finds out that Max isn't quite like her little one.

Well, in the last seven days Max and I have reconnected with great friends whose lives have finally calmed a bit after welcoming a new baby into their lives and a moving into a new house.

Calvin lounging.
 That little guy's older sister was born one month after Max.

Carah mesmerized by cartoons.
This red-headed beauty can jump, and climb, and run, and even has a few words. So where is that twinge of discomfort when she literally runs circles around Max as they both giggle?

"Cooking" together a few days earlier.
Nowhere. It never existed. You see, her mom, Cait, and I were pregnant together. We shared our joys, our concerns, our frustrations. She also knew early on that Max would be born with Down syndrome. Sean and I were very forthcoming about Max's diagnosis with everybody, so when Max was born there was no shock. Our friends and family were already prepared. There was no discomfort, just excitement, support and love

Now, Cait just sees Max as Max. He's not that little boy at the park who's not quite like everyone else. He Carah's friend, and that's all. It's terrific. There are no awkward explanations, uncomfortable silences, or feeling the need to sneak out a little early.


And that's all I really want. Look at that little boy. And look at that little girl. They're not so different, don't you think? I mean, come on, they even have (almost) the same color hair!

Thank you, friends.