Archive | July, 2012

Scarlett and Me

Scarlett had her first well-baby visit with our pediatrician today.  When we arrived, the receptionist handed me a card from Diana, one of the nurses.  The entire staff has been there as long as I can remember (we’ve been with the same pediatrician since Kevin was born 15+ years ago), and Diana is the first nurse there I ever encountered – way back when Kevin was a tiny newborn and I had to take him in for jaundice.  For some reason, she’s taken a special liking to us, and every time I’ve announced another pregnancy, she’s just been thrilled for us.  I still remember when we took Finn in for his first well visit after he was released from the hospital, and how I cried and cried over his diagnosis and everything he had already been through in his brief life, and she just put her arms around me and let me cry and told me everything was going to be okay.

Anyway, so I opened this card today, and inside she had written a very heartfelt note congratulating us on the birth of another baby, and she had included a $50 gift card to buy something for Scarlett.  I was speechless.  Have you ever heard of such a thing?  It was incredibly touching.

So, back in the exam room, I stripped Scarlett down to her diaper for her first weigh-in.  Let me just say that she nurses about every hour and a half to two hours around the clock, so I was expecting to see her tip the scales at approaching 8 pounds (she was  7 lbs. 5 oz. and 20 inches at birth).  I was sort of taken aback when the scale said she weighs 7 pounds even, and she was measured at (still) 20 inches.  In fact, I almost started crying.  How can it be that at two weeks old, she’s not even back up to her birth weight?

This all hearkens back to the feeding difficulties Finn had and how I agonized over every fraction of an ounce he gained or lost in the first few months of his life.  I’m not saying that Scarlett has feeding difficulties – she nurses like a pro, and has from right after her birth, as far as I can tell – but this lack of weight gain was like a flashback for me today, and it kind of threw me for a loop.  I don’t want to obsess over it, or make more of it than necessary, but  . . . I don’t understand it.  The pediatrician isn’t concerned about it (although he does want me to bring her back for a weight check in a couple weeks), and I even called Sue, my midwife, and she’s not concerned either (although she said she’d come over in the next few days and weigh Scarlett on her scale so we can get a real comparison to her birth weight).

What am I afraid of?  I’m trying to figure that out.  I guess just health issues in general.  I guess, also, I’m afraid that for whatever reason she’ll prove to be a poor gainer, and the doctor will send me home with formula next time like he did with Finn, only this time I don’t have a freezer full of expressed breast milk to supplement with instead of formula.

I’m borrowing trouble, aren’t I?


Aside from the weight/growth issue (which I shouldn’t be concerned about, right?), Scarlett seems to be doing just fine.  She’s still crabby a lot of the time – and let me tell you: this tiny little lady can bring the house down with her screaming – but she appears to be healthy, just feisty.

As for me . . . I’m hanging in there.  Some days are better than others.  I’m still trying to come out of the fog of postpartum-ness (maybe 2 weeks is rushing it), and I very much still feel a little alien to the outside world right now, if that makes sense.  As corny as this may sound, I feel like Michael is the only person in the world who gets me right now, and so he’s the only one I really want to be around right now.  I still break down crying out of nowhere – not all the time, but here and there.  I think it’s safe to say that I have the baby blues – partly hormonal, and partly just feeling very overwhelmed at times – not necessarily by Scarlett and her needs, but by the other kids and their needs and demands and not minding, on top of Scarlett and her needs.  I’m on the lookout for PPD, as I’ve had it before, but I don’t think that’s what I’m dealing with currently.

Anyway, baby’s crying.

Faith and Disability – Blog Hop!

I am, as many who have been reading my blog for any length of time know, atheist.  This seems to be somewhat unusual in general – at least in my community where Christianity runs rampant – and even more so in the Down syndrome community I have become a part of online since Finn was born almost four years ago.

Click the photo to see what other bloggers have to say about this topic

I grew up Lutheran . . . whatever that means.  My mother took me and my brothers to church sporadically.  My dad never, ever went with us.  He was, I believe, agnostic, and also being the ’60s throwback rebel that he was, he made plenty of irreverent jokes about the “Jesus freaks” and the “Holy rollers.”  In any event, Christianity did not play a huge part in my upbringing – and yet, I grew up with steadfast beliefs: that it went without question that God existed, and that he watched my every move (and I had plenty, therefore, to feel guilty about), that I must confess all my sins daily via prayer (most nights while I prayed, my mind would wander and I’d inevitably fall asleep mid-prayer, which necessarily had to be added to the running list of “sins” I must confess the next night), and that even so, on Judgment Day, I would have to stand and face God and answer for every single wrong deed or thought I had ever committed in life.  I don’t remember ever getting any sense of comfort from my beliefs.  Sure, there was the promise of the afterlife, but one wrong move could land me in the fiery pits of Hell, and even if I ended up in Heaven, the idea of eternal life – even in paradise – freaked me the hell out.

In my adulthood, I tried a number of different churches, trying to find a sense of belonging, searching for that special something that would fill the void I carried around inside of me (the void I later realized was depression).  I never found it, and in fact, eventually abandoned organized religion altogether, so appalled and offended I was at the hypocrisy and judgment of these mere mortals (“Love your neighbor . . . homosexuality is sinful . . .”).  Still, I clung to my fundamental beliefs, insisting that one could have a relationship with God without being part of some man-made religion.

Eventually, though, my beliefs began to fall away.  I had always had questions that I mostly just swallowed, but there came a time when, on some subconscious level that I only recognized later, I began to allow the questions to take shape, and I began to explore them, believing, I think, that whatever faith I had might be made stronger by being put to the test of rigorous questioning.  It didn’t, however.  The more questions I had, the less sense the so-called answers made, the more it all began to resemble folk stories, myths, and fairy tales, with no substance to back it up.

It was a process.  I went from calling myself a Christian, to then agnostic.  But even that felt dishonest – it wasn’t really that I wasn’t sure.  Finally, only about five years ago, I let go and called myself atheist.  I don’t believe that any god or divine force exists.  I don’t believe there is anyone or anything looking out for any of us.  I don’t believe there is any afterlife; while I do believe in the “soul” in the sense that every person has an “essence” that makes them them, I don’t believe in a soul that is separate from or survives the body.  When you’re dead, you’re dead.

And you know what?  When I finally allowed all those old beliefs to fall away, I felt a weight lifted.  I felt free, and at peace.  And I realized that this life – this one life I have to live – is even more precious than I had thought before, because it’s all I’ll get.  Those feelings of peace and liberation remain with me today.

So how does this all play out in raising a child with a disability?

Everyone approaches parenting – of any child, with or without disabilities – from the perspective of whatever beliefs and philosophies they hold.  I’m no different.  My perspective just seems to be different from a lot of people’s when it comes to matters of faith.

The religious, I have found, seem to have a need to find divine meaning in things.  Many believers in the Down syndrome parenting community believe that God has given their child to them – specially chosen – to teach them some great lesson, or to use as a tool to teach other people some great lesson.  Some believers believe that having a child with Down syndrome is a special blessing; other Christians believe it is a punishment on the parents for unrepented sins.  Some of these views infuriate me because of their dangerous ignorance.  Some irritate me for the same reasons that many Christian views irritate me – views that have nothing at all to do with disability, but rather a propensity to foist one’s beliefs on others.

As soon as Finn was born, I felt bombarded by Christian sentiments.  “Do you have the Lord?” I was asked.  (As if “having the Lord” was necessary to cope with the awful tragedy of having a child with Down syndrome.)  “God never gives us more than we can handle,” I was told.  (An empty platitude if I ever heard one; plenty of people can’t handle, as it turns out, what life throws at them – that’s why there is suicide.)  “God gives special children to special parents,” I heard over and over.  (Really?  Even in Eastern Europe, where babies born with Down syndrome are still routinely institutionalized?)


Life is random, that’s what I believe.  Nobody and no thing is in control behind the scenes – and that realization allows me the freedom to accept Finn without the weight of anger at some divine entity for burdening my son with a disability, and without the sense that I am expected to utilize Finn to get some dogmatic message across to anyone.  I believe that sometimes, in the dance between egg and sperm, in the delicate division of cells and chromosomes, something out of the ordinary happens, and a child like Finn results.  Life and parenting themselves provide innumerable opportunities for growth, for soul-searching, for learning profound lessons; there is no need to attach anything divine to it.  We can take whatever meaning we choose from every single experience we have.

My faith lies in science – to better understand Down syndrome – and all other disabilities – from a clinical standpoint, so that individual lives might be better lived.  My faith lies in humanity, and people’s ability to see beyond outward appearances, to embrace diversity, tolerance, compassion, and inclusion.


Ten years ago today, I welcomed my second-born into the world.  He came out screaming and didn’t stop for many moons.

He grew into a beautiful, sweet boy, though, who, for ten years now, has brought laughter and gladness to our family.

One year

Two years

Three years

Four years

Five years

Six years

Seven years

Eight years

Nine years


Happy birthday, Joey!

A Week and a Day Later

The weeks immediately following the birth of each of my babies has always been a struggle for me.  I walk around in a foggy, altered state, trying to figure out this new existence.  It’s confusing and frustrating – physically no longer pregnant but not back to what I once was either, and emotionally all over the place.  In the beginning, there’s euphoria . . . and as the days go on, the blues always set in to some degree.  My hormones are wreaking havoc on me; the night sweats, the tears out of nowhere, the pining for a pregnancy that no longer is – pining because the realization hits, once again, that caring for a baby while it’s inside is much easier than when it’s outside.  There’s a sense of letdown after spending all those months in excited anticipation – and now it’s over and here I am with a baby who cries almost all the time, and six other kids who are being largely neglected by me because I’m tied to the rocking chair with the baby for hours at a stretch.

I’m trying to figure Scarlett out.  Does she prefer to be swaddled tight, as I thought at first, or not so much?  She’s one of those babies – so far, anyway – who doesn’t want to be put down.  Wearing her in a sling would solve some of this, of course, but the sciatic pain I developed over the last few weeks of pregnancy has only gotten worse since she was born.  So I pop ibuprofen and sit against a heating pad as much as I can, and hobble around the rest of the time.  She hates being in her carseat, and the couple of times Michael and I have ventured out with her to run errands, she’s screamed the entire time.

My blood pressure has been screwy still, too.  The first couple of days following Scarlett’s birth, it dropped so low that I constantly felt woozy and on the verge of fainting.  I lowered the dosage (I had started taking a higher dosage towards the end of my pregnancy), and it would go down for a few hours and then shoot back up pretty high.  I tried all the things my midwife suggested, but in the end I finally called my doctor and explained the situation to him and he prescribed an additional medication to take with the one I’m already taking.  Both are deemed safe to take while nursing, but both do pass into breastmilk, and I hate it that Scarlett is getting any of it, but I have to do what I can to stay healthy, too, right?  Ahh, the dilemmas and guilt of a nursing mother with a chronic condition.

Michael goes back to work tomorrow.  He’s been off this past week – or, I should say home, but working from home every day – but tomorrow he has to go back to the office.  I dread it.  I don’t know how I’m going to cope.  Although he’s been working from home, it’s still been nice to have another set of hands here to deal with the other kids.  Plus, he’s really the only one who understands my tears and mood swings.  Friends have stopped by, to bring meals and to see the new baby, and as grateful as I am for these things, there’s a feeling of having to be “on” for other people, which I just don’t have the energy for right now.

Anyway, I’ll adjust, we’ll all adjust, I know we will.  It’s a tough time right now; it’s a little overwhelming.