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.