Saturday, May 25, 2013

Your Son Is Adorable...

...said a very handsome man--though not as handsome as my man--in the parking lot at BJ's this afternoon. He was one of several patrons at the warehouse store who noticed Max, who was especially charming and playful today. This man's complement was different, somehow. Though it was subtle, I could see a hint of knowing in his eyes, like that almost imperceptible acknowledgement between two people when they secretly realize they belong to the same club. I was just about to ask him when he said, "I have a daughter with Down syndrome." Just one simple sentence, and an instantaneous connection is made.

"You do? How old is she?"

"She's ten."

"Oh, do you live around here?"

"Well, no, in Rhode Island."

Bummer. The club is a small one and it's always so exciting to meet new members. There is such comfort to be found in the shared experiences that connect people who live under the same unusual circumstances. There's a sense of camaraderie that is absent in other relationships. It's nice.

We didn't talk long. Max waved goodbye and we left. I smiled all the way home.

My son is adorable, isn't he?

Not much in the way of pics today, but as thanks to you for reading, a cute one, courtesy of my dad.


Tuesday, May 7, 2013


I'm writing stream-of-consciousness tonight. How do I boil down everything that has happened with my boy and with our family since March 31 in a cohesive, thematic post? I don't. I just write down what comes as it comes and leave it at that.

I'm in the home stretch. After weeks (truly) in the fog of one illness after another I've emerged with a baby so low he's collapsing my bladder and surges of energy that have me madly washing dishes, folding clothes, and finding homes for all those weird things we might need someday but don't seem to fit anywhere.

Max has taken to patting my belly. I like to think it's because he knows his little brother is in there and he's practicing his nurturing. But it's probably really that it sticks out so far it's the first thing he sees when he looks at me. Sitting on my lap is uncomfortable. His back arches funny and he slips off my knees so we read books side-by-side with me leaning in to help separate the pages for easier turning. After each one Max climbs down off the couch, waddles to the shelf, grabs another, waddles back and I heave him up. The ritual repeats about eight times, several times a day. I love it.

Progress is not a straight line. It's not continuous. It happens in fits and starts. The fits are frustrating, for all of us. Max throws tantrums because he can't do or say what he wants. Sean and I lose patience because as well as we know our boy we can't read his mind. And though it's hard to admit, sometimes there's an element of doubt that Max will actually be able to do it. Sign language has been such a blessing. It didn't come quickly and like lots of other things I wondered if it ever really would. And then it did. Slowly. But it came and he began to communicate with his eight or so signs. We stayed at that spot for many, many months, and then Max got his glasses. It's hard to know if the glasses were actually the catalyst or if it was just a coincidence, but soon after he got them so many things began to flow. Now he's signing words we've never taught him like mosquito and lion and hat. His waddle is quickly turning into a run. He's also become mommy's little helper, pitching in with sorting the laundry, closing the cupboards and picking up the toys.

It's reassuring to see his progress, especially since he will begin public preschool in November. I worry that the coming of the baby will stall some of that progress as can happen sometimes. Things take Max longer and I don't know if that also applies to regression. Will his stall out period be longer too? Of course, in the end it doesn't really matter...objectively that is. But life isn't objective, is it?

Subjectivity. Dangerous. Fed by emotion. And boy is there a lot of that around here. I mean, come on! I'm pregnant. What do you expect? There is one thing that's been giving me a lot of grief throughout this pregnancy, and I was shocked (understatement) that my OB guessed what it was at my appointment last week.

This is difficult for me to talk about. I haven't mentioned it to Sean. To make it clear, I feel it's necessary to give a little context. I struggle with depression. It's been my periodic companion since college, and while I've developed some very successful coping strategies it sometime backs up on me. Postpartum depression hit me hard after Max's birth. To be fair, there were a lot of extenuating circumstances. Max wasn't thriving and needed to be fed every 2.5 to 3 hours 24 hours a day for the first 4 months. At six weeks of age heart failure landed him in the hospital, finally coming home on Christmas. There were also several environmental factors that complicated the matter further. I didn't know anybody in town, having moved here from Boston. Our house was at the edge of town with no sidewalks or any place to go that didn't require a car. Being 300 years old the house had very, very low ceilings, small windows and very dark walls. And the icing on the cake was a winter so cold the snow never melted between storms giving us so much of it I had to buy snowshoes just to make it out to the wood pile to get fuel for the stove.

So why is this important? Well, both my OB and I are concerned about postpartum depression with this birth. She's worried about guilt. And you know what, so am I. Guilt? Well, imagine this. You have a perfect child. A child who overflows with joy, who brings so much happiness to his family and inspires so much love in everyone he knows. And imagine this child has a diagnosis of something that will affect him and his family for his entire life. A diagnosis that you would never hope for, or even imagine would touch your life until it does. And now imagine that you are anticipating the birth of another perfect child, except that this time, this child's perfection is more widely agreed upon. He has no known issues, appears to be typical in every way, and the thing you hope for more than anything else is that he be born without his brother's diagnosis. But wait, I thought he was perfect. You said you wouldn't change a single hair on his golden head. Tell me, then, how do you reconcile your wish that the new baby NOT be like him?

I suspect that someone reading this will comment that it doesn't matter. That we will love them both equally. That the brothers will grow up happy and healthy and friends. And of course they're right. The comment isn't even necessary. I know it's true. But it doesn't change the conflict I feel with simultaneously embracing and rejecting what makes Max who he is. Can you imagine it? Some of you can. Some of you can't. It's a little embarrassing, to be honest. Makes me feel weak-minded or shallow.

My friend, Brett, told me shortly after the birth of her first son that the reason some people don't know how to act when they learn that Max has Down syndrome is because they feel guilty that their own children don't. I didn't get it when she said it. Now I do. And it's okay. Everything will be okay, and pregnancy hormones be damned. My boys are my boys are my boys. All of them, even Sean. And I wouldn't change thing...except maybe the blue toothpaste left behind in the clean white bathroom sink!