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.


cupcake monkey said...

God I love you!!! You really need to be a writer...if I haven't told you that before.

Anonymous said...

I have to say that while it is terrible that Rojan has to go through this, I couldn't think of two better parents he could have to endure it with. Honestly. I think he's going to learn to handle it with grace, just like his parents do when things get thrown their way.


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