Monday, September 28, 2009

Rainbow Babies

Luca is SUPER excited that she's going to have a cousin next February, courtesy of my brother and his wife. We talk a lot about how Aunt Jaimi is growing a baby cousin in her tummy, and from the start Luca's been telling us it needs to be a girl.

As always, Luca got her way and my brother and his wife will be welcoming a baby girl into the world early next year. We are ALL so excited for them!

The other day, we were talking about the baby, and I asked Luca what kind of baby Jaimi is having.

"A RAINBOW baby!" she replied.
"A rainbow baby?" I asked.
"Yes. She's havin' a rainbow baby," she assured me, nodding her head up and down for emphasis.
"What kind of baby is a rainbow baby, Luca?"
"Girls are rainbow babies." Again, said with confidence.
"So, if girls are rainbow babies, what are boys?" I asked.
"Girls are rainbow babies and boys are comfortable."

Well, then. The universe, explained by a toddler.

Thursday, September 17, 2009

6 Months.

Rohan had his half-birthday yesterday, and I cannot believe it's been 6 months already. Maybe it's the ease of having been there, done that once before that made these 6 months slip past without it seeming so long. Perhaps it's the mad rush you're constantly feeling when parenting 2 kids, working, and trying to keep a marriage and everything else in your life well-nourished and tended to. Either way, when I woke up yesterday and realized it had been 6 months since the day Rohan came into our lives, it almost felt unreal.

He's such a big, strong, vibrant boy. Cheeks so edible like apricots. Eyes so blue, lighting up every time he smiles. Two little teeth peeking out of the lower gums. Coos and goos and gurgles, elated screechs like a pteradactyl, hands forever searching for something (someone) to touch.

When I wake with him at night now, to soothe him back into baby dreams of milk and his big sister's smile, he reaches up with one hand and runs it through my hair. It's not the tugging and yanking moms grow to fear, but the gentlest touch as he runs his fingers through and then pulls the ends gently so he can rub the hairs against his cheeks.

He's a live wire, that boy of mine with the oversized hands (like his daddy) and the quick fire in his eyes (can I credit daddy with passing that down as well?). He's been mobile since he was just over 4 months old, quickly graduating from the rolling stage to the holy-shit-we-need-to-move-everything-above-crawling-baby-eye-level stage. Indeed it's not yet a hands-and-knees crawl, but he gets around faster than you'd expect. He's even mastered crawling over the legs of a parent, which were strategically positioned between him and the dog whose tail he was eager to either grab or bite, depending on his mood at the time. He sits up well on his own, and has begun to master the transfer from sitting to lying on his belly, which means the real crawl is not far behind. It also means we're in for a rude re-awakening, as we'd grown lax in baby proofing with a complacent toddler in the home. I fear we're going to be spending a lot of weekend hours clearing the floors to make room for Rohan.

Our challenges in the first 6 months have been plentiful between big sister jealousy, new schedules, figuring out how to go ANYWHERE alone with 2 little ones (grocery shopping with 2 kids requires a pre-store strategy session), and learning to manage Mastocytosis. Rohan's always been full of emotions, moving from happy to mad and back again in the blink of an eye. When he's upset, he wants touch: hold him, kiss him, rock him as he buries his little face into your neck and lets out his own baby version of a string of profanities (at least it's what it reminds me of). When he's happy, he...wants...touch: hold him in the air, kiss his buddha belly and ripe cheeks, rock him as he bends his forehead to touch yours and squeals in delight. As he gets older his temperament evens out gradually, and the fussiness is much more mild and manageable. Part of it is us; our mastery of his moods and the skill parents learn of being able to sense a meltdown just before it hits. But mostly I think he's come to learn he's safe with us and loved with us and this has made him mellow some. But there's still a fire there, in his eyes, and I wouldn't wish that fire away. It makes him who he is, and just as it sometimes ignites into a full-scale fit, more often than not that fire lights his face up into a smile to wide and bright you can't help but be charmed.

I swoon over this boy daily, our 6 month old with the cheeks and the hands and the smiles. And since I've been here once before, albeit with a different kid, I know not to mourn the passing of infancy as he becomes more mobile and independent. Instead, I wait eagerly for the day he adds "Dada!" to his repretoire of words (which right now consists only of "Mama") and the day he pushes up onto hands and knees and crawls and EVEN the day he learns to say "NO!". But I won't wish away these early months either, for their sweet smiles and the moments where he falls asleep in my arms, fat cheeks puffed out and mouth in an 'O', hand loosely grasping a wisp of my hair. I am so lucky to have him.

Sunday, September 6, 2009

"My son has a disease."

I have wondered now and then whether this might be some sort of karmic punishment for being smug. Smug in a healthy and beautiful daughter. Smug in easy pregnancies and a homebirth that made me feel like Wonder Woman. Smug in the way people who are happily married and happily parenting tend to be, walking around rubbing my growing belly and sharing my plans and worrying over silly things like, "What if it's another girl, but she's not as cute as Luca?". Yes. I wondered that. So sue me. The truth hurts, and the truth was I often wondered if this was fate's way of telling me I let myself get too damn smug...too sure...too positive my kid would be perfect to the point that I dared think whether or not he or she would be cute was something worth worrying over.

For the record, even now that I am on this side of the news, I still think it was a question worthy of pondering. And I no longer feel bad for admitting that while pregnant with #2, I just hoped he or she was equally as attractive as but not more attractive than #1.

The simplicity of that feels good.

I posted something here about a weird pregnancy symptom I had. I was 20 weeks pregnant when I noticed that the skin below my engagement ring and wedding band was red and peeling. There was a tightness to it, a feeling like a chemical burn I suppose, and nothing I tried made a difference. I googled it and nothing came up. I asked my mom and my midwife, but neither thought it was anything to worry over. My mom suggested it was soap or lotion trapped under the ring by swelling fingers. My midwife suggested perhaps my rings were too tight. Neither of them had any reason to think it was a sign of anything more serious. It nagged at me, though, and not just because it sort of hurt and looked weird. But because it fed into my deeper, quieter fear that something was not right.

God, I've never talked about this. Not even with Darrick, really, because he would have told me I needed to stop googling (he would have been correct, no doubt) and that the ultrasounds showed a healthy babe. I hinted at the little twinge of doubt that was sprouting in my soul a few times, but mostly it was around the time we had our 1st trimester screening, in the days we awaited the results to the bloodwork which would tell us whether our borderline ultrasound was something or nothing. And when that came out ok, when we were told our chance of a 'normal' baby was better than average, I started to breath easier, but it was still there, tugging at the darkest corner of my mind telling me "Something is not right."

What reason did I have to think those tempt fate with the mama's intuition that was trying to clue me into something on which I couldn't put my finger? When so many pregnant women have bad reflux and heartburn, who was I to let my mind wander into possible explanations for my reflux and heartburn? And so what about that burning red ring finger? It was probably a boy I was carrying, and his hormones and mine were probabaly doing battle and upsetting my body's natural pH. No reason to worry. Right? But what if someting's not right?

As the due date grew closer, my anxiety over things rose, but what I was anxious over I could never put my finger on. I was never really worried about labor pain, nor pushing. I never doubted that my body could handle labor and delivery without intervention, that Darrick and I could and would get through the darkest hours of childbirth pain because we had each other. I never even worried about the safety of birthing Andre, the baby growing inside me, who I knew would be big and strong and born safely and powerfully. But, again, somewhere in my subconcious was a little flicker of a doubt saying to me "Something is not quite right.". I guess maybe I misplaced this anxiety and read it as worry over how this baby would compare with Luca...whether our families would love it as much...whether it would have a face that had people stopping us in stores to coo and swoon over it. But under those fears, hidden away because I was so scared to give voice to it, was that nagging choir of "Something is not quite right."

The day you give birth, no matter how it happens, is a day you won't ever forget. My memories of bringing Rohan into this world, into the loving arms of our midwives and up onto my chest under the large palm of his father, will never fade. I cried when he was born. For him...for my son and how beautiful and perfect and healthy and strong he was. I looked through eyes blurred with tears, and yet I could see him perfectly clearly, as though I did not need eyes to see this sweet boy who had grown and flourished inside my body. I knew him already, with his ruddy newborn skin and big blue old-man eyes. I cried for myself and Darrick too, for the strength we both had in the deepest moments of labor, when every contraction had me reaching into the depths of my being, harnessing a power I always knew I had, but had never tested in such a way. My memories of the day Luca was born are similar..feelings, hands, kisses, strength, love, smiles, joy. Bliss bliss bliss.

And there it is, in those pictures from the moments following his birth. The mascara smudged, our cheeks red with exertion and pride in the moment, more bliss. And on his tiny little forearm there's a spot. My fears. Concentrated in one tiny spot on his tiny newborn arm. It seems to taunt me now when I look at those pictures. It's just one tiny little spot, but because of it, I am now a member of the club of moms who carry special medication in the diaper bag and a special stain on their heart.

"My son has a disease."

I've said that phrase now more times than I could count. I remember naively coming home with the paper from the pediatrician. It was a single sided document tucked in with the other papers from our visit that morning, folded in half and tossed on the kitchen counter. I hadn't even looked twice at it. This was to be my first real lesson in having to do the work for our son, and my husband was the one who taught it to me. I mentioned it in an off-handed way, just as the Pedi had to me, and my husband - the man who never reads directions, nor magazines, nor books - picked it up and read it. And the more he read, the quieter he got. And anyone who knows my husband knows it's never a good sign for him to get quiet.

"Honey, this is bad," he told me.

"They said it's no biggie. We just have to avoid a few things and it'll go away on its own," I naively insisted. "Something is not right", my subconcious was whispering.

"Honey, Our son has a disease. A DISEASE. It. Is. Not. Okay."

So many moments in life shape us. Change the course of our future. The day I moved out of my parents' house into a 1 bedroom apartment with him, a futon, and a mattress on the floor, and we ordered a pizza at midnight because we could. The moment he knelt and pulled out a ring. The 3 a.m. phone call telling me my dad might not make it through the night, then waking on a cot in the ICU waiting room to see him sitting at my bedside, watching over me. The "I Do"s. The "Fuck YOU!"s. The word "Pregnant" on a tiny digital screen. The moment I became a mom and he a dad for the first time. The second line. The moment we became Mom and Dad to two. A million tiny memories that we store away, for better or for worse, and know without a doubt we will always remember.

And now we had to add this to the list. The moment he looked at me, his eyes big with worry and anger - at the Pediatrician for not telling me more, but also at the world I suppose - and said, "Our son has a disease."

Rohan was only 5 weeks old, a fact that seems just as unfair to me now when I reflect back upon it as it did at the time. Five weeks seemed too young for a label that strong, that damning, and so I did what any good mom might be inclined to do. I convinced myself that This Was Not A Big Deal. And for the next 3 weeks I mentioned it to a few people here and there, but every time I said it to someone I felt the need to almost excuse myself for bringing it up.

"It's totally not a big deal."
"It'll go away over time."
"It's not that bad, just kind of sucks, you know?"
"It's rare. Really rare."
:::unspoken relief as other person realizes that only about 200,000 kids have it, so since they know someone with it chances are good their kids won't have it too:::
"It's not contagious. It's more like a disorder than a disease, really."

We lived in denial about needing to see a specialist for the first 2 weeks. I had myself convinced there was nothing they could do anyhow. So instead I just spent a lot of time crying, mourning the loss of my perception that my baby was perfect. Worried about the spot spreading. Worried my beautiful baby would be mocked and made fun of when he got older. Scared for him. Scared for us, for Luca. Sick to my stomach over the 'coulds' and the 'what ifs'. Trying to accept that "My son has a disease" was part of my vernacular now. That people would look at me with pity. That people would look at me and think Rohan seems just fine, so why the fuck is she constantly going on about this? That people would think to themselves Thank god it's not me. That I would also wish it wasn't

One of the hardest things about raising a kid with a disease like Mastocytosis is that the kind he has (Solitary) seems so benign. He has a spot on his arm. We can see changes in it almost minute to minute, depending on his environment, stress level, and whatever other triggers set it off, most of which we have yet to really identify. But to everyone people who don't live with this thing in their lives, it looks like a spot. A birthmark. Small. Unobtrusive. No big deal. And so I hesitate to talk about it and to tell people how it feels. How dark a place I was in when I realized my baby has a Disease. I guess I should say it like that, capitalize it to reflect the big place it's had in my life since he was born. Give it the respect it's due. Admit how much space the word takes up in that sentence; in our lives.

My son has a Disease.

And even now, even as I write this up and remember and process and grieve some more over what was lost when we got that diagnosis, I feel intense guilt. Guilt over complaining about this when I know so many people have it worse. Kids with Masto spots covering their bodies. Kids with other, scarier diseases. Babies born to parents who destroy their perfectly healthy little bodies by physically abusing them. Women and men and children with problems far more serious and life-altering that a spot on the arm and some belly discomforts.

Guilt over the weeks after we first found out. The weeks when I grieved over the Rohan I'd lost (the perfectly healthy and happy newborn I thought I'd given birth to). The weeks when I mourned the cards he was dealt and the years of worry and discomfort and being different he will need to endure. Guilt over ever thinking that this Disease makes him anything less than perfect.

He's not. He's nothing less. In fact he's MORE. He smiles more brightly than any baby I've ever known. He touches more. He looks more. He is more than I ever expected. More fussy. More needy. More loving and gentle and sweet. And just as that voice in my subconcious was trying to tell me Something is not right, it's there still, but now its message is different. Now it's telling me He will be ok.

A Good Day

Thursday, September 3, 2009

It Seems Clever At the Time

It seems clever at the time, but in reality, the headband/scarf/bandana is the universal sign for "I didn't wash my hair this morning." among women. Isn't it? This morning I planned my entire outfit around laziness, meaning I had to wear something that would match with the only scarf worthy of hair-wearing, a light green and white one which has also served as a belt in a past life when my waist wasn't the circumference of a barrel in which you might see someone tumbling over Niagara Falls. It's now relegated to Greasy Hair Cover, matched with Kelly green pants and a black peasant-feel top. AKA the only clean outfit with which the scarf would blend, thereby hopefully looking more like a thoughtfully chosen accessory than a grease-catcher.

Except that, it's universal. Isn't it? I don't know a single adult woman who has not attempted the whole, too-lazy-to-wash-so-I'll-cover-instead trick. Go ahead...claim you've never done it. You're either lying or scarily germophobic. And so, when I decided to do my daily act of kindness and get coffee for Luca and Rohan's 'nanny'*, I noticed the glance the drive thru chick at Starbucks gave me. It went a little like smile, glance furtively at scarf on customer's head and determine she is attempting to hide grease, smile a little wider.

Because, you see, she didn't wash her hair this morning either. Her wide black headband tells me it's so.

*(a) we call our daycare provider a nanny because she's too fabulous to be called a 'sitter', and 'nanny' makes me feel a little more high class, and (b) ok so I really wanted a nonfat pumpkin spice latte so I could pretend for a moment it's actually going to be fall sometime soon in this hellhole metropolis I call home, but I DID buy he a coffee because I think she's fabulous


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