I'm a grouch

What a perfect title for my return to blogging. I've decided I need to return to blogging, since that's the thing to do when you're a part of the Down syndrome community, and my main goal in life is to fit in. I'd like to chronicle our journey into this strange new land, and what better place to start than before our little guy joins us? So here we go....

Yes, I'm a grouch. There's always been some grouchiness lurking inside me (ask my younger sister who had to share a room with me for years and years, or my parents who put up with my teenage angst, or my hubby, who's tolerated my mood swings with good humor and patience for the past 16 1/2 years) but usually I can keep it suppressed and put on a happy face. I always think of what my funeral will be like. I want whoever eulogizes me to talk about what a sweet, kind, happy person I was and not have the members of the congregation looking around at each other, with quizzical looks and snickers under their breath--"Whatever," they'd be thinking. "Melissa was a judgmental, opinionated, cranky JERK." Basically, I need to master this most recent infection with grouchiness before it's too late and this scenario comes true. So, how 'bout if I psychoanalyze myself? Seems like a perfectly reasonable thing for an amateur to do. 
So I'm 7 + months pregnant with our 6th baby, which means my body's been torn apart 5 times before. Granted, that's not as many times as some people, but Michelle Duggar is completely NUTS. Every joint, ligament, and tendon in my entire body hurts (except maybe my elbows), and I move and sound like a geriatric penguin. I can't sleep for more than a few hours at a time because of the discomfort, and a pillow between my legs and Tylenol just barely make the pain more bearable. I love being pregnant, because it's such a miracle that there's a little person growing inside me, but I also just want to feel like myself again, and I know the only way to accomplish this is to get this little sucker out (and then pursue 1 or 2 surgical interventions to be absolutely certain this never happens again).

HOWEVER, no matter how awesome it'll be to be done with the pain and discomfort of pregnancy, I'm scared witless of this baby coming out. I'm sure he'll be sweet and smell yummy and I'll love him, but he's also coming with an extra 21st chromosome in every cell in his body. Here's why that scares me: anything can go wrong with this boy. Most people, when they think of Down syndrome, only consider cognitive impairment and typical physical characteristics they've seen in the person or people they've known with Ds (and, apparently, everyone in the WORLD has a niece, nephew, old neighbor, or best friend's child who has/had Ds. Everyone but me, that is). But get this, because our baby has Down syndrome (Ds or T21), he's also automatically at dramatically higher risk for a laundry list of problems: infantile spasms, heart problems, cervical spine instability, vision and hearing problems, chronic ear infections, obesity, gastrointestinal conditions, 2 different types of leukemia and testicular cancer, celiac disease, Hirchsprung's disease, impaired immune system, hypotonia (low muscle tone, often resulting in feeding issues), hypothyroidism, respiratory disorders, sleep apnea, chronic constipation, diabetes, seizure disorders, autism spectrum disorders, attention deficit disorders, depression, stereotypical movement disorders, dementia and early-onset Alzheimer's, and I think that just about covers it. Of course, the doctors will reassure you that kids with Ds only develop one or 2 handfuls of these various things, but the thing for me is, which ones? Do you spend your time nervously watching for one of them to surface? I already know from talking to other moms with kids with Ds that the first year or two of their lives are spent taking them to appointments with various specialists: neurologists, cardiologists, otolaryngologists, endocrinologists, and so on--all just to check for (and hopefully, rule out) a lot of these various conditions. Also, they get early intervention therapy (which we're blessed enough to be able to receive in our home)--speech, occupational, and physical therapists come each week to help these little guys achieve their highest potential, for the FIRST 3 YEARS. They teach you skills that you then work on with your little person. Awesome, huh? Of course, from what I've gathered, little ones with Ds still achieve developmental milestones quite a bit later than their "typical" peers, even with all the therapy (I'm guessing it'd be even later without the therapy). Here's a chart that shows the typical age kids with Ds reach different milestones: http://http//www.down-syndrome.org/information/development/early/?page=7. If you don't actually go read it, I'll just tell you some of the numbers I've gotten from other moms: neck control (supporting weight of own head) at about 6 months, potty-training at around 4 or 5 years, walking at around 2 years, crawling at about 18 months, sitting up at around 1 year. So, even though I'm going into this knowing that he eventually WILL achieve all the milestones other kids will, I'm pretty nervous--I think just having had 5 kids before him will make it hard for me to not get discouraged when he's not doing things when it feels like he should be.

Another thing I worry about is breastfeeding. I've heard that these babies, with their low muscle tone, small mouth and large tongue, and "defective" suck/breathe/swallow patterns (which often causes aspiration of liquid into the lungs), are often much more difficult to nurse than a typical baby. It's really important to me to nurse him, though, because it'll apparently be good for his speech later on, and the antibodies he gets from breastmilk will help his wimpy immune system, and the DHA in the breastmilk will help with his brain development. So, I'm thinking I'll be pretty stubborn with the nursing, but I'm anticipating a possibly stressful experience with it....

Also, the risk for stillbirth is many times higher in a Down syndrome pregnancy than with others, because the placenta is a product of the baby and therefore has the extra chromosome through all of ITS cells, too. This can lead to it deteriorating and failing like an old placenta much earlier than the normal 40 + weeks. I'm so in tune with this baby's movements, and am hyper-aware of both the amount of movement, as well as the frequency, throughout my busy days. I get a little panicky when he's not moving as much or as strongly as he should. Fortunately, the medical community is aware of this risk, and so they have guidelines in place for increased monitoring of the pregnancy--now that I'm at 32 weeks, I get to have bi-weekly non-stress tests at the hospital and increased ultrasounds to monitor his growth and placental function. That helps me feel a little better, although I'd prefer to have my own ultrasound machine or, at the very least, a Doppler, to monitor his heartrate all through the day.

So, there you go. That's what I think is making me grouchy. I'm pregnant and hormonal and sore and scared and nervous and sleep-deprived and worn-out from worrying so much. I know one of the things I keep hearing from the moms I've "met" on my favorite online Down syndrome board--it's on BabyCenter--is that arriving on "the other side" of a Down syndrome pregnancy is so sweet and beautiful that the worries and concerns take a back seat to the blessings. I'm banking on that with everything I can spare. But, from this side, it's still unknown territory for me, and I don't do too well with the unknown. In fact, it terrifies me. I feel like I've got this "fight-or-flight" reflex turned on high pretty much all the time, so I'm always on the verge of a meltdown or blow-up. I'm not much fun to be around, and I like being fun to be around! I keep reminding myself that there are MUCH worse things that could happen in this life, so this is pretty small potatoes compared to some of the biggies out there, but I can't quite silence the worry gnawing at my brain. I feel like I've achieved a major breakthrough over the past few months, though--I'm excited to meet this little boy. Scared and worried, yes, but I have every confidence that I'll love him with every fiber of my being. I already do, as much as that's possible without actually getting to hold him and sniff his head and kiss his neck.
So how should this post end? I'm not sure. Probably with a joke, since that's my favorite way of coping with stress and anxiety (second only to hollering or crying). So here's a joke from my 9-year-old (it's potty humor, which I absolutely do not condone, at least not outrightly): "Have you seen the movie 'Constipated?' No? That's because it never came out." Hahahahahaha! Ba-dum-bum.