Wednesday, December 4, 2013

All About Chance

I've been feeling conflicted. How do I deal with Chance in this blog? I mean, it's about Max and life with Down syndrome. Look at the title for Pete's sake. Do I leave him out completely? That hardly seems fair. Do I mention him only as it relates to Max? Hmmm...doesn't seem right. Do I change the name of the blog? Nope, don't want to. And how do I respond to the multitude of pleas for pictures of a happy, squishy baby?

I think I've figured it out. Tell me what you think. I keep the name, the theme, the whole nine yards, but every few posts I dedicate to Max's brother: pics, updates, silly stories. Maybe even some insights or observations on Down syndrome--you never know. Pretty good, right? I thought so.

So here we go. This one's all about Chance.

He's crawling. Today's Chance's half birthday and he's already on the move. It came quickly. First he mastered the push-up followed closely by the plank.

Then the hands-and-knees rock. He's a regular rock star! We've started real food too. I roasted up and pureed a few sugar pumpkins so now we're set for quite some time. I'm also experimenting with something called baby-led weaning. Some of the moms in the breastfeeding group I was attending this summer were doing it. After my initial shock I kind of liked it. Take a look:


A real die-hard baby-led weaner (hee hee) would feed baby ONLY the same whole foods that mom and dad eat. No purees (and of course, no junk food). Ours is a hybrid version. Chance gets some purees and if we're eating something he can hold and mouth then he gets to try it. Without teeth he does little more than gum it up.

Some of Chance's fans may remember the full head of dark hair he was born with. At four months it started to fall out but only in patches. The rest continued to grow and lighten while the bald spots filled in with pretty blond fuzz. Though he may not look much like me his hair is definitely mine. I love the little curls.

And to finish up today's post, here is a list of answers to the most common questions about my boy Chance:

About 16.5 pounds.
Happy and smiley almost all the time.
Fascinated by his big brother.
Really only freaked out by beards and "Row, Row, Row Your Boat." (Makes him cry.)
Naps some.
Doesn't consistently sleep through the night.

Stay tuned for our next installment. I'm working on a post exploring new discoveries about Max since beginning school. It'll be interesting.

And for those of you who made it all the way to the end, a minute of Chance not quite crawling, but close.

Friday, November 22, 2013

Just So Darn Cute!

I'm a worried mama. I worry about everything, even about whether I worry too much. It's a problem. And since we're two weeks in and preschool is still sucking the life out of Max you can imagine how my insides feel.

Yesterday at pick-up his teacher, Miss Becky, couldn't say enough about how smoothly his transition has gone. Phew! That's a load off my shoulders, let me tell you.

The only problem, for the last two afternoons he's fallen asleep during the car ride home. That's all of three minutes. And I don't mean he dozes off. This is log-worthy sleep. No manner of noise, jostling, light or disrobing breaks the trance. So what's the problem, you say? Well, this late afternoon snooze eliminates all hope of a successful bedtime. Last night, we finally won the battle around 9:30. The night before? 11:00. What?! That's right folks, my three-year-old wouldn't fall asleep until 11:00 pm, which made my 4:30 am wake-up so much fun.

But here's the kicker, he's just so darn cute when he sleeps...

Wednesday, November 13, 2013

Maximus the Sonambulist

Fancy word for sleepwalker, which Max isn't, actually (I don't think), but get this.

I don't like when Sean closes. He doesn't get home until almost 10:00 pm and if I haven't already gone to sleep I do shortly thereafter. He often closes several nights in a row which means we can go for days without seeing each other apart from the late night trips to the bathroom. It sucks. It really does, but the past two nights--lovely.

Max is exhausted. Preschool's tough, and it's right during nap time. Ugh. So for two days now he gets home at 3:45 ready to play and by 5:00 his eyes are drooping. He's not even that interested in dinner so I change him into his pj's. At 5:30 or so we take our places on the couch--me leaning up against the corner and Max between my legs, head resting on my chest. And we watch Ellen--some recently DVR'd episode. He starts out kinda interested, clapping with audience and laughing when Ellen does, but he quickly loses interest. It's not long before his eyes close and his breathing becomes slow and deep.

That's it. That's the moment that I love. My boy, lying peacefully against my body. I can feel his ribs expand as he fills his lungs with air. The binky he'd been sucking the life from just moments earlier dangles precariously from his lips. His trust in his mama is complete.

And then this happens:

Sean gets home last night around 10:00, as usual, and goes upstairs to change his clothes. He comes back down a minute or so later with a smirk on his face.

"Where's Max?"

"Huh?" I ask.

"Where's Max?"

"He's not in his room?" Sean's mouth spreads in a smile. "Is he in our room?"

"Go check for yourself."

I can tell he's enjoying this. He follows me upstairs and turns on the light as I open Max's door. No Max. I turn and scan the nursery. No Max. Can't be in the bathroom; I remember shutting the door. I move toward our room and notice the door is slightly ajar. I step inside and Sean flashes the light on like a strobe, and in that instant I see Max asleep on our bed with his legs dangling over the side. My heart simultaneously melts with love and drops with guilt.

Maximus the Escape Artist forced our hand recently and he is now learning to sleep in a toddler bed. Every morning he gets up and makes his way to our room, gently closes our door waking us just enough, and waits for Sean to hoist him up. He usually sleeps for another couple of hours.

Last night, it seems, Max woke up, and thinking it was morning he went to our room. Of course we weren't there. I wonder what he must have thought when Daddy didn't reach for him over the side. He clearly climbed up anyway.

Sean gently returned him to his bed, but at 5:00 am as I made myself presentable for work I heard a thud and a whimper. Then a muffled cry and a few foot stomps. The door almost hit him as I entered. He was sprawled on the floor quite a distance from his bed. I gathered him up and took him to Sean where he quickly nestled into Daddy's warmth.

Why was he just laying there? Did he remember not finding us the night before. Was he afraid to leave his room and not find us again? As I write this now I'm listening carefully for the sound of little feet. About 30 minutes ago I heard a thud and ran like a bolt of lightening up the stairs. He was face down on the floor next to his bed. I scooped him back up and laid him down again.

I didn't want to leave him there, not even for a moment. I want him to keep that trust that lets him fall asleep so willingly in our arms. I want him to know that we will always be here for him, looking out for him and waiting to catch him if he falls (as long as it's not from a toddler bed). I want him to know that we love him and need him and always want him around. I don't want him to be afraid. I want him to know that he is loved. Because he is so loved.

And because I don't have a picture of him sleepwalking, here' a recent one of him just walking. Enjoy.

Tuesday, November 12, 2013

Rite of Passage

I missed Max's first day of school today. I mean, I wasn't there to take a picture of him in his school clothes and the new backpack with the front door as the backdrop. While Sean filled that role I was filling the minds of some reluctant teenagers with all kinds of trivia about the Spanish Civil War. Did you know the North American troops that joined the Spanish to combat the spread of fascism were called the Abraham Lincoln Brigade? Me neither. Not before today.

I arrived 10 minutes early for pick-up. Very eager mama. All of us eager mamas gathered at the front door in the unseasonably arctic air waiting for our little ones. I wished I'd worn a jacket, or at least a scarf, over my worn-out cardigan. True to my forever self-deprecating form I allowed myself to feel a little pang of discomfort as I noticed the trendy boots, the pricey jeans and the coiffed hair of some of the other moms. My utilitarian bun and yoga pants felt suddenly very sloppy.

And then one of those pretty mamas said, "Oh, look at that little one!" "He's mine," I said, chest puffed up and big grin on my face. Sloppy bun forgotten. Miss Becky was holding his hand as he exited the building. He looked tired, but not too tired to flash that smile that melts my heart. His first day a success despite a momentary meltdown at drop-off. And as we drove the 1.5 miles to our house my eyes teared. My little boy, Max, is now a big boy and it happened so fast.

It didn't really. It felt like it took a really long time. The thing with Down syndrome is that everything takes FOREVER. As a result, Sean and I enjoyed Max's infancy for months and months beyond what's typical. Max may have turned three yesterday, but he's barely a toddler. He learned to walk less than a year ago, doesn't run, doesn't jump, doesn't say a word, and only yesterday played with other children. I mean WITH other children, not alongside them. And now he's "My Schoolboy Max". Seems strange, that's all. Strange and exciting. I welcome the growth and only somewhat mourn the loss of my infant boy. 

So, here's a run-down of the days leading up to the commencement of this new chapter in our lives.

New Mickey pj's in anticipation of the next day's festivities,

preceded by some very real tears shed as his episode of Mickey Mouse Clubhouse ended.

Then the big day: the Mickey-themed birthday party.

Yesterday, the actual birthday, outside in the autumn sun.

And every night for the past several, an exhausted boy falls asleep before his bedtime.

Wednesday, October 30, 2013


Forget all those other milestones. Forget rolling and sitting and standing and walking and saying the first word. None of these long-anticipated milestones comes close to measuring up to the IEP.

At least, that’s how I felt before we had our meeting with Max’s new school.

As a teacher I’ve attended countless IEP meetings, contributing my input to the pot of academic and behavioral mush that special educators sift through to create an individualized education plan. (That’s what IEP stands for.) It’s a legally binding document detailing everything the school intends to do in order to make the school and the curriculum accessible to the student. I’m never part of the testing that precedes and informs these meetings, and because I’m a high school teacher I rarely witness the creation of the original IEP. That usually (hopefully) happens earlier in a child’s academic career.

These IEP meetings can go in any direction. They can be frustrating, productive, enlightening, informational, uplifting, discouraging, argumentative. They can even stall out when nobody agrees, needing to be reconvened another day.

In light of all the meetings I’ve attended I’m surprised to realize and a little embarrassed to admit that I’ve never truly tried to put myself in the parents’ shoes. I’ve never really wondered what it felt like to have almost strangers talk so clinically and cold about my child. I mean, Max has a number of medical specialists and their talk is clinical. This should be just the same, right?

Wrong. I don’t really know why, but it’s uncomfortable and at times, upsetting.

I think there are a few things at play here. First, even for Max’s heart failure and subsequent heart surgery we were never visited by more than two physicians at any one time. Four therapists / educators attended Max’s IEP meeting. They sat together at one end of the table while Sean, Max’s early intervention case leader and I sat at the other. It felt a little like a face-off. Second, all that medical stuff—heart, ears, throat, eyes—it’s got nothing to do with me. What I mean is, nobody could ever accuse me of making any of it any worse. Well, I suppose in theory they could but I have no doubts of any kind that we did everything exactly as we should have. But having what amounts to a panel of experts talk about all of Max’s developmental deficiencies starts my own insecurities bubbling up and I wonder if any of them think we aren’t doing everything we should be doing. Maybe they think—and maybe they’re right—Max would be talking, for example, if we had worked harder at it for the last three years.

I can’t continue down that path, though, because it’ll make me nuts. Parenthood brings with it enough guilt as it is. I really can’t add any more to it.

So, back to the meeting. That Friday morning we spent the better part of an hour discussing the various evaluations the school performed in anticipation of the IEP. Here are the results, in a nutshell:

Gross motor: Max is around the 18-month mark having begun to walk less than a year ago.  Not bad.

Fine motor: As I’ve indicated in previous posts, this is Max’s strength. He tested at 22-24 months. I think that’s great.

Cognitive: 12 months. Considered “very poor.” Whoa. Okay. Mentally, Max is one year of age. Really? Hmm. That’s gonna take some time to digest.

Social-emotional: 9 months. Also “very poor.” What? I don’t even know what to say that.

It’s hard to hear and see those results, especially when we see Max for all the awesome things he can do. But that’s just it. We compare Max to Max and every day he wins. The school, though, compares Max to the general population. With that as the standard there’s no wonder all they see are his deficiencies. As understandable as that may be, I didn’t like that focus. It made me feel…bad.

Finally, as we closed in on the hour mark, we discussed the IEP. Here’s what the school proposes:

Max will attend preschool five days per week from 1:00 – 3:30. He’ll be placed in a non-integrated classroom with about five other students. He’ll receive PT twice per week and OT once per week. Both will take place within his classroom. The speech therapist will pull him out for one-to-one sessions three times per week. His teachers will put special emphasis on teaching him classroom routines like hanging his own jacket on a hook and lining up to go outside.

We’re a week and a half out from the meeting and I’m feeling good about the outcome. I didn’t at first, though. Max spends a few full days at daycare every week. He can handle the time, but his classroom is small. However, to my knowledge all of the little ones in his daycare classroom are typically developing and I think the exposure has been tremendous, motivating Max to achieve independent locomotion.

We were hoping he’d be in an integrated classroom, but after learning there are about 20 other students between the ages of three and five, we’ve come to the conclusion that the more intimate environment suits Max a bit better. Crowds overwhelm him. Sometimes he shuts down.  His afternoons will be far more productive if he remains comfortable enough to engage in the activities.

And now we have a preschooler. Neat.


Monday, October 21, 2013

Lots of Little Buddies

The Buddy Walk was last, last weekend. There are three of them in Massachusetts, but the one we did is a three-mile walk around Lake Quannapowitt in a really cute town about an hour from us called Wakefield, MA. It’s hosted by the Massachusetts Down Syndrome Congress, and according to them, this year was the largest ever topping out at 3500 walkers. Wow!

Confession: I didn’t fundraise very well this year. Chalk it up to the new baby and extreme sleep deprivation. Next year I’ll be better. I have daydreams of leading a team of, I don’t know, 20 or more and raising thousands of dollars. Some people actually do it. Someday.

And they're off!
Little brother's first Buddy Walk.
Little brother gets a kiss.
Max and Signing Time's Rachel Coleman.
Finally, three years into this journey I feel like a part of things. I no longer feel like an outsider trying to fit in, trying to come to terms with a future that, though beautiful and bright, I didn’t choose. I no longer feel like I’m playing catch-up along a never-ending learning curve. I’m now confident enough to offer support to families who are new to all of this. It’s exciting and empowering and gives me that sense of control that I hate to admit makes me feel more comfortable.

In fact, thanks to my new friend, Tiffany, and her beautiful baby, Xavier, I, or I should say we have turned the little, informal playgroup that Max and I have been a part of into an official, formal support group. It’s awesome!! Saturday was our first official gathering, and it was everything I hoped it would be. We’ll be meeting again in two weeks and attempt to continue the every-other-week schedule. The MDSC even wants to include our info on their official support group list. Neat!

Most of the Franklin Area Trisomy 21 Club
Well, I wanted to spend more time and energy on this post but we are sleep-training Chance this week. He’s upstairs right now screaming, my heart is pounding, and I’m a millimeter away from rescuing him from his agony and undoing all the progress we’ve made. Needless to say, I’m distracted, so before I start meandering I’ll sign off.

Take care my friends.

Monday, September 30, 2013


I've been trying to write the post for a long time. I couldn't tell you how many drafts have been tossed into the recycle bin. There have been many incarnations--the scientific explanation, the heart-wrenching Lifetime Channel version, the "just so you know" post. None of them feel right, so nothing gets posted.

This time, it's all or nothing.

Max, 3 months. March 4, 2011, in the morning.
I found that hat the other day in a box of Max's stored clothes. I cried as the memories flooded my mind. This is the morning of his open heart surgery. Just typing that sentence has sent a few tears trickling down my cheeks.

WARNING!! This next picture is a little difficult to look at.

Max, 3 months. March 4, 2011, in the afternoon.
A rush of nausea and vertigo sped through me and my knees went weak when the nurse pulled back the blanket and I saw this. I think I may have audibly gasped. Among the plethora of tubes you see is one that goes down his throat to help him breathe, and two more acting as drains. The white bandages hide the spots where they enter his chest.

Max didn't stay in ICU for very long--a day or so. And it didn't take long for him to come back to us after the pain killers wore off.

His entire hospital stay lasted only eight days. He was discharged on the very day he turned four months old.

Max, 4 months. March 11, 2011.
You can see his wounds. The long incision was sealed with some kind of glue. As he healed the glue peeled off bit by bit. The drain holes had stitches that needed to be pulled a week later. Max didn't even flinch.

Near the base of that long scar, but not visible here, is a large nodule. It's on the breast bone. As I understand it, it's kind of like a scar on the bone in the spot where the breast bone was held open with the spreader tool. It'll never go away. I think it will become less noticeable as he gets bigger.

The night before the surgery was strange and challenging. Sean and I dealt with it separately, in our own ways. He stayed at the hotel bar with is brother and mother. I stayed with Max by myself in the room and took a series of sad photos of him lying on the bed. I can't explain what it feels like the night before you might lose your child. Hollow and painful. No one could comfort me.

After letting the nurses take him from us the next morning Sean returned to the room to nap. He wanted me to join him and pressured me quite a bit. I didn't want to and finally snapped at him. I wanted to be as close to Max as they would let me get which was a whole waiting wing where dozens of people awaited news of their little ones. There was a strange sort of camaraderie among the waiters, all joined for a moment by something unthinkable and miraculous at the same time.

Max's defect is called a complete atrioventricular canal (AV canal). Basically, the wall that runs down the center of his heart had a large whole in it. As a result, his heart had only one valve, not the required two valves, allowing oxygenated and deoxygenated blood to mingle. Not a good thing. He would not have lived for a very long time.

Partway through the morning a nurse came to tell us that the initial incision had been made. No one returned with any news until the surgery was over. It was still some time before they let us see him.

We are blessed to live in this age. In 1985 people with Down syndrome had a life expectancy of 25 years. Now, hospitals eagerly repair heart defects that otherwise would have meant death. We are even more blessed to live where we do, only miles from the greatest pediatric cardiac hospital in the world: Boston Children's Hospital.  The doctors and nurses there saved my boy's life. They saved mine.

All I can say is, thank you.

Wednesday, September 11, 2013

Say what?!

Sean is away on business this week so the boys and I are staying with my parents. I leave for work so early in the morning that someone else has to be with the boys when they wake up. Max loves hanging with Grammy and Papa so it's a nice solution to our child care dilemma.

Today, early afternoon, I received a text from my mom asking me to give her a call punctuated by a smiley emoticon--confirmation that there was, in fact, no emergency. Here's how the call went:

"Hey, Mom."

"Hi," she said with an inflection that said you'll never guess.

"Um, is Max sleeping?"

"Well." Again that inflection. "I went up to check on him and he was in my closet."

"What?!" See, Max sleeps in a Pack n' Play at Grammy's.

"Yeah. He climbed out and started reorganizing for me."

"Climbed out?" I asked, both impressed and horrified.

"Yeah, climbed out. I wanted to see if he'd do it again so I put him back in and he climbed right back out again. Really fast."

"Wow. Holy cow. Can you record it for me?"

This is what she got:

Boy are our lives about to change!

And you need to realize how impressive this actually is. Having Down syndrome means that Max has low muscle tone. His resulting weak muscles cause him to reach gross motor milestones significantly later than typical children. I mean, he rolled over at 10 months. He began to combat crawl at 14 months. Walking came at 25 months. Climbing out of the crib? Geez! Part of me was actually thinking we might never have to deal with it. I kinda wanted to keep him in a crib until he became to heavy to lift out. Looks like Max had a plan of his own.

So here's the kicker. I sent that video to Sean, and between meetings he texted me, "Cool. I taught him that on Monday. Don't be mad."

Say what?!

It seems Sean thought Max was ready to climb out and wanted to teach him how to do it safely. Oh, man! How can I be mad about that?

Friday, September 6, 2013

A Mind of His Own

Before I begin I feel compelled to tell you that I am living in a second-week-back-at-work-while-breastfeeding-and-pumping-and-sleep-deprived fog so thick that yesterday I reached the bottom of my bowl of Chex before I realized that the milk had gone sour. Last week I left a carton of eggs in the bread basket for hours. On Tuesday I got to work and couldn't remember at least half of the 40-minute drive.

I'm tired.

But I always have time for this guy:

Elmo was one of last year's birthday gifts, but Max just recently realized how cool he is. It's fun to watch him watch Elmo. Since it's range of motion is greater than most robotic toddler toys, I think Max may partially believe that Elmo is alive. It's really cute.

And then there's this:

Argh. Sean and I see this and our parents' words trumpet from our mouths. "Max, move back. Don't sit so close to the TV. It's not good for your eyes. You're gonna hurt your neck." Then we drag him back a few feet and before we know it he's just six inches away again.

I don't get it. Like many televisions today, ours is much larger than necessary for the size of our living room. He can see it just fine from the couch a few feet away. Probably better actually, considering to see it from the floor he has to look up at an almost 90 degree angle. How can that be fun?

But that's what he wants to do so gosh darnit, he's gonna do it.

We experience a lot of these moments lately. Children with Down syndrome are known for being stubborn. At least that's what people say but I think that's a little unfair, really. I'm sure there are plenty of folks rockin' an extra chromosome that are as accommodating as can be. In fact, I attribute Max's strong will less to his Ds and more to being our son. He is blessed, or cursed as the case may be, with two parents who have wills of steel. Gets us into trouble sometimes.

That will combined with two and a half years of age make for exhausting meals, exhausting trips to the park, exhausting rides in the car, exhausting grocery runs. It's exhausting, and yet, it's thrilling and fulfilling in a way I didn't understand before he came into our lives. We have an exhaustingly wonderful life here.

And Max's little brother looks like he's following in his big brother's footsteps.

All of a sudden, in a flash, Chance has busted out of all swaddles and learned to roll over from front to back, back to front, and in both directions. As a result, this little show-off has decided, "To heck with sleeping on my back! That's for babies." And so we have this.

I admit, it makes me nervous. Max's low muscle tone kept him in a swaddle and on his back for months and months. Almost a year. We got a little spoiled. Chance is moving a little too fast for me, and yet, it adds to the thrill.

I can't wait to see what the next few weeks, months, years will bring. I have faith it will continue to both thrill us and exhaust us. I wouldn't have it any other way.

Tuesday, August 27, 2013

Where Max Is At

People always say that you shouldn't compare your children to each other or to someone else's. Weird advice. I mean, I get it, but how is that possible? Think about it. Look at my boys above and you'll notice a difference in their hair color. Trivial difference, I know, but nonetheless the moment I notice it I'm comparing them (contrasting, technically, for you English teachers out there). If the picture were clearer you'd notice they both have blue eyes. Also comparing, but here I'm highlighting something they have in common so it doesn't seem like such a big deal.

Where am I going with this? Well, Max will be turning three in two and a half months at which time his Early Intervention services will cease and future services will become the responsibility of the local school district. In order to receive them he will attend preschool. Before that happens Early Intervention is required to perform a final evaluation. Max's took place a couple of weeks ago.

They call the evaluation "The Michigan." It was apparently written there. Max has done it three or four times. To the observer it looks just like a series of activities that Max sees as play. He has to put pegs into a board, stack small blocks, find objects hidden under cloths, use a pincer grasp to pick up Cheerios--a boat load of tasks like that.

The first time he did it the results really upset me. See, "The Michigan" attempts to determine the developmental age of a child in relation to typical children. Even though I knew Max was delayed, seeing that, for example, his gross motor skills were those of a child half his age was devastating. I cried as his speech pathologist explained it to me.

This most recent evaluation didn't have the same effect on me. Instead I find it interesting and informative. Since Max is my first child I don't really know when typical children reach their milestones. I actually like knowing where Max is in relation to his typical peers. In fact, some of the results make a really proud mommy.  Not to mention, after two and a half years I'm very familiar with Max's strengths and weaknesses, and so I wasn't really surprised. And as I read through the report it occurred to me that you might be interested in what an evaluation says Max can do and what he needs to work on.

In order to understand the info below you'll need to know that Max is 33 months old.

Fine Motor--This is mostly Max's ability to use his fingers to complete tasks. It's one of his strengths. His skills in this area are established at 22 months with a scatter up to 24 or 25 months.

Cognition--This includes problem-solving (i.e. figuring out how to get something out of a bottle), imaginative play, imitation, etc. Max struggles here a little. He performs at a level between 19 and 23 months.

Language--Language is Max's biggest struggle at the moment. This area is differentiated into receptive language (understanding language around him) and expressive language (any language he produces). His receptive language skills are at a 14 month level and his expressive skills are at 12 months with a scatter up to 15 months.

Social / Emotional--Max rocks this one. He's well established at a 27 month level.

Self-care--This includes feeding and dressing himself as well as toilet-training. 22 month level.

Gross Motor--Walking, running, jumping, etc. Once Max's biggest struggle, he now performs at a 23 month level. Woo! And thank goodness. Carrying a 30-pound toddler is really tiring.

Now, this proud mommy wants to brag a little. Check out this proof that my big boy knows how to swim.

Woo hoo!

Monday, August 19, 2013

Back to School

They say God never gives you anything you can't handle. Well, before I dive into my intended post, let me share with you this delightful anecdote.

Yesterday I took BOTH Max and Chance to church for the first time. We parked around the block (the church has no lot), I put Chance in the chest carrier, grabbed Max's hand and hefted the large diaper bag containing all the supplies necessary for a successful adventure--Goldfish, lift-the-flap books, sippie full of water, change of clothes for both, and a few diapers. When we got to the VERY long staircase leading to the front door I decided it best to carry Max up or else we'd miss the entire mass.

Finally inside we found an empty pew near the back and I set Max up with a snack. We'd missed the first reading, but that was probably for the best because it meant less time hoping for good behavior. After fifteen minutes or so Max got antsy so I brought out the books which occupied him until the arm hair of the man next to us won him over.

Then it was time for communion. "Alright, Max. Let's go." I grabbed his hand and he obediently trotted with me along the side aisle to the front of the church. Once there I briefly let go of Max's hand to receive the host and that's when it happened. Max bolted for the alter. I grabbed his arm. He went boneless, fell to the ground and screamed. I bumped into someone as I bent over to pick him up. As I righted myself, Max almost on my hip and Chance still in the chest carrier, I lost my balance and fell backward to the floor. Please note that I was wearing an above-the-knee dress. Nobody was hurt (physically), and two parishioners stepped forward to help me up. Thankfully Max recognized the need to keep still so I was able to scoop him up, my arm across his chest, his feet dangling at my side, and make my way back to our seats as people silently stared. I felt stupid. But what doesn't kill us makes us stronger, right? I think it'll be a few more weeks before we make a second attempt.

Anyhow.... On to today's post.

Driving around town I notice that some of the trees have orange and red leaves signaling the end of summer and the start of the new school year. Every year I feel the same weight and anxiety as I think, "Oh man. What have I gotten myself into?" This year included as I won't have the luxury of staying home with Chance as long as I did with Max. In fact, next Monday is the big day.

This year is chock full of worries. Will I be able to pump enough milk to feed my baby? My lactation consultant assures me that I will. Do we have enough money to pay for childcare for both children? We did the math and the answer is a big fat "NO," at least not with current arrangement. Will the four new teachers in my department enhance or hurt our work environment? We'll have to see. And most importantly for this blog, will Max's transition to preschool go smoothly? Oh man. I hope so.

Actually, he won't start preschool until his third birthday in November. That's when the state hands over the responsibility for Max's services to the town. Our first meeting with his future school is set for next Tuesday--I'll be missing part of my second day back at work. I expect a lot to happen beyond introductions and a general description of program options. Apparently Max will be having a series of evaluations in the weeks ahead to determine his placement.

I feel wedged between a rock and the school district here because I want to be present for all of the evaluations, but I don't have any sick days. Missed days of work will result in loss of pay until sometime in January when the new days are allocated. I think being present for each evaluation will give me the information that I need to advocate for Max to the fullest extent. If I were to miss evaluations and he were placed into a program that I felt did not provide him with the best opportunities I know I'd blame myself. I've heard good things about our local schools, and I do believe that the educators and specialist involved in his assignment will have Max's best interest at heart, but while they are experts on the educational side, I'm the expert on Max. No one knows him better than his daddy and I do. That counts for a whole lot.

My other big worry is a bit less practical, more emotional. What if Max doesn't make any friends? I don't expect the children in his class to bully him for his Down syndrome. It's more a concern that his differences will mean that the other kids won't think to invite him into their lives outside of school. More a passive exclusion than an active one. What I want for Max is a life that is as typical as it can possibly be with playdates and birthday parties and impromptu trips to the park (but not just with Mom). I want the kids to WANT to have him on their team during recess. I want them to WANT to sit with him at lunch. I know that someday (who knows when) Max will realize that he is different in some ways from the other kids his age. My hope is that he comes to that realization on his own, and that it is not brought to stark relief by his classmates.

I can't make the other children be his friends. I can't protect him from every potential hurt. All I can do is help to stack the cards in his favor, and be there for him if they start to tumble. I imagine it's the same for all parents whose children are going off to school for the first time. I don't know. I'm new to this. But you can bet that I won't rest until I'm certain Max has the best path possible laid before him. After all, what else are parents for?

Finally, a few pics of our week.

Looking sharp, boys!


With friends (Caroline) at the farmer's market.

Two peas in a pod.

Monday, August 12, 2013

Pulling Weeds

I love pulling weeds. It's meditative, repeatedly yanking unwanted plants from the ground, the dirt falling through fingers and cramming itself underneath fingernails. It also offers a terrific and immediate sense of accomplishment. I guess it's an achievable way to wrangle nature, especially the morning after a rain. Sean thinks I'm nuts and wants no part of it, but apparently my brother Matt and his wife Laurel are my kindred spirits. Turns out I'm lucky, too, because between pregnancy, preparing for maternity leave, having a newborn, lots of rain and unseasonably high temperatures, my yard was looking like curly hair after a humid night of tossing and turning. They generously offered to help me and conquered the most difficult part of the job: the spaces between the pavers of the patio.

Laurel and Matt, crabgrass assassins.
American Gothic revisited.
My yard now feels neat and clean and well-loved. It's welcoming. Sean says it's "visually polite." Most importantly, it helps me to feel calm when I'm outside.

So, I've pulled literal weeds. Now, in the true spirit of amateur writing I'm going to force the metaphor. It's time to pull some figurative ones.

Headaches. I get some really bad ones. Not migraines, clusters. They are, in a word, horrible. Two weeks ago I started getting headaches with symptoms similar to my clusters and panic set in. I typically have to put my life on hold for three to four weeks until the headaches clear but right now I just don't have the time. Thankfully they are not clusters, just Godzilla-sized tension headaches.

The cause of tension headaches: stress. So if stress is the weed in this scenario, then stress is what I've got to pull out of my life. I know what stresses me: traffic, too much to do in too little time, toddler meltdowns, money, deadlines. The problem is, I've usually succumb to the stress before I realize it's even there. Luckily (tongue firmly planted in cheek) at the first sign of stress a shooting pain, like an ice pick plunging into my brain, warns me I need to chill out. It's like a giant hand clearing the field that is my body of all the stress weeds that threaten to take over (Oh brother. Too much?).

So what am I doing to reduce stress? Lots of things. Deep breathing. Exercise. Writing lots of lists. Doing fun things with Max. Sometimes my attempts at fun crash and burn, like the sprinkler in the backyard, or bouncing stuffed animals on a taut blanket. But one thing that always succeeds is a trip to the park which inevitably includes a rest and snack on the bench.

Strike a pose!

Monday, August 5, 2013


Big discoveries are awesome. Like discovering the New World, or gold in California, or how delicious peanut butter is covered in chocolate. But little discoveries are more fun. Like...

Hammocks are fun.
Aunt Laurel, Max and Cousin Nicholas
Papa, Max and Cousin Nicholas
So are bubbles.
Papa, Max and Cousin Nicholas
 Fishing is bonding.
Cousin AJ and Uncle Andy
Daddy, Max and a pike
Papa and the bass
Max likes soccer.
Max and Aunt Nicole
The men are focused.

Uncle Matt
Uncle Andy, Daddy and Cousin AJ
My family is beautiful.

Max, me and Chance
Daddy and Chance
And the best discovery is one I make every year. I love family vacations.