My friend Lexi (you know, the one who is wise and amazing and has a boy with autism and a little girl with Down syndrome, and who I'd say is my soul sister if that weren't so totally cheesy?) had this great blog post about perspective, and now it's gone, so I can't link to it so you can read for yourself just how great it was. But it was really, really good, take my word for it, and I've been thinking about it a lot over the past couple days. It's been in the back of my head as I've been throwing myself this extravagant pity party. She wrote it after her little girl came home from the hospital for the 2nd time because of pneumonia, and after the earthquake and tsunami that ravaged Japan, and after finding out her friend's little girl has a mass in her stomach that may or may not be cancerous. And it was so, so impressive that she could see past her pain and stress and worry and see those people around her who were suffering.
I just got home from a funeral. It was my friend's little boy who passed away. He was almost 6 months old, and he died in his sleep, in the middle of the day, after she put him down for a nap. He had fought valiantly through 2 months in the NICU after being born 10 weeks early at 2 lbs. 12 oz., and had been home almost 4 months. As a mom, I can't think of anything more devastating than having to bury one of my children. When the 4 pallbearers walked into the chapel carrying that little miniature coffin, it was so heart-rending--it literally took my breath away for a few seconds and made me weak in the knees and my body tremble. And the poor mommy looked like she hadn't stopped grieving and crying since Monday, when he passed away. (And I wanted so desperately to take all that aching pain away.) We came home after the funeral, and of course, the family went on to the cemetery to lay his little body in the grave. I can only imagine the heartbreak of this poor mommy as her little boy's body, which she'd held and kissed and rocked and loved for such a short time--and yet so fiercely because he was almost taken from her right after his birth and she wasn't going to let him go that easily--is separated from her for the rest of this life. I'm sure that for now at least, even the knowledge that she'll get to hold him again is minimal comfort when her arms ache for his warm little body to snuggle right now, and tomorrow, and next week.
Last week, one of my good friends rushed from her home in Idaho to central Oregon to be with her family as her brother died in a hospice room. He was about 30 years old, and left behind 3 little kids and a sweet wife. He'd had melanoma a few years ago, which had gone into remission, only to resurface as a tumor somewhere else, and that cancer spread so horribly rapidly and took over his whole body in just a few months. His suffering was terrible, and he's now thankfully been released from all his pain, but still--his wife is now a widow, and his little kids have no daddy.
Why do I share these 2 terribly gut-wrenching stories? Because I know that what I'm dealing with and fretting over with this baby I'm carrying really is so very, very small in comparison to so many tougher things in life, and I've lost perspective. It's like crying over a hangnail when the person next to you has no arm. Or something (this makes sense in my head). And the hangnail hurts and you don't have nail clippers to cut it off, and you obsess about it and it snags on your clothes and other things, and it's always right there, driving you crazy no matter what else you happen to be doing. But, still, it's only just a hangnail, and that person next to you has no arm. And you look at them and realize that even with your painful hangnail, you can do lots of things like play with your kids and fold laundry and make the bed. It might be annoying, but you have both your hands to do the things you need and want to do. And that poor person next to you with no arm is, well, basically just much worse off than you are. So you're maybe crying about the stupid hangnail bugging you (haven't you ever cried about a hangnail? Let's pretend you have), and through your tears you look over and glimpse that person missing an arm and realize how foolish your tears are over something so insignificant. And you remember your blessings and feel so grateful.... But, still, maybe when you haven't seen that armless person in a while, you forget and start feeling sorry for yourself again about your dang hangnail.... But hopefully you're smarter than that and remember that your life is so good and you have a great family and wonderful friends and access to wonderful truths contained in scriptures, and a personal relationship with a God who really does love you and won't leave you alone, ever, (and this is where the hangnail analogy falls flat on its face because it's so shallow), and because of all these wonderful parts of your life, you can have the strength to make it through whatever comes your way. Not to mention that you really don't have to look very far to see someone whose life sucks a WHOLE lot worse than yours does. That's all a part of perspective, and I'm so glad Lexi reminded me of it.
Saturday, March 12, 2011
Friday, March 11, 2011
I feel a gloomy, self-pitying post coming on....
I just got off the phone with one of the hospitals I went to during this pregnancy--again. Seems we owe them several hundred bucks, and our account is overdue, and they're about to send us to collections, but wanted to give us one more opportunity to pay our bill before it reflects negatively on our credit. This is a bill I've been working on for months, getting pre-authorizations and appeal letters from doctors. Of course, the part I've been working on--the genetic testing (amnio)we received--is only one part of the whole bill. I guess I should feel happy that we no longer owe $3500 and are now down into the 3 digits instead, but I'm not one bit happy. I'm ticked off. The part that we still owe (besides our co-pay) is for the genetic counseling we received after the level 2 ultrasound, and before the amnio. It all happened so fast that day--we saw a couple of "soft markers" on the ultrasound, and were told that the only way to know for sure whether our baby had a chromosomal abnormality was to do the amnio. We said we'd like the amnio, and when should we come back for that? The doc told us she could do it right then, but that she was going to send in a genetic counselor to talk with us first, to prepare us for what we may discover. The counselor took a detailed family history of everything physically and emotionally and cognitively wrong with any of our family members (and I swear I could hear her thoughts as she wrote things down--"And you keep having more kids because....?" I bet that was a real puzzler for her, considering our family's... unique gene pool. And I felt compelled to explain to her that this baby was a little whoopsie surprise). And she left and we had the amnio. Well, the lady on the phone today told me that most insurances don't cover genetic counseling. My thought was, "Well, if that's pretty common knowledge, then wouldn't that have been a great tidbit of information to share with us before sending the genetic counselor in?" Stupid hospitals. Stupid insurances. So I pulled out the only tool I've got in my arsenal these days--tears. I actually didn't do it on purpose, but I broke down crying. Here I'd just spent almost 2 hours on the phone with our new hospital (where we'll deliver) and our insurance, trying to figure out what will be covered and what needs pre-authorization, and getting CPT codes from one to give to the other. Do you cover this hospital? What about this procedure? What about this one? And heart surgery? And a NICU stay? Do I need pre-auth for that? Oh, I need to call the hospital and get a CPT code first? OK, I'll call you right back.... I was feeling like I was being so on top of things and proactive and responsible, and just when I'd cleared all that up, I get the call from the other hospital about my delinquent bill. Aaaaand, I went right back to feeling like a clueless loser.
The reason this feels like such a big deal to me is that, really, this baby so far has been not a whole lot more to me but 5 months of constant puking, overlapped by 5 months of worrying about diagnoses and bad news and more bad news and doctor visits and tests and more doctor visits and then more bad news and pain everywhere and dealing with insurance companies and worrying some more about surgery and wires and isolettes and when and where do we start the clubfoot treatment if he's at this hospital for his heart surgery, instead of the other, free hospital where I had treatment set up, and oh yeah, he's breech and I may need a c-section (which isn't such a big deal, but come on--we've got so much other crap going on with this kid, couldn't we at least skip one surgical procedure?). And my mind always, ALWAYS flashes forward to what other issues will crop up because of the Down syndrome once he's here. Feeding, breathing, gross motor, fine motor, immune deficiencies, bowel problems, leukemia? In contrast, what have I worried about with my other babies? What colors to do their room in? How they'd fit in with the other kids? How overdue they'd be? And I know that this baby will be a huge blessing in some miraculous, beautiful way that I just don't understand right now, because lots of people have told me that it would be that way, and I trust them. But I don't get it yet. So far, he's just thumps and bumps in my belly and a blurry image on a screen and a heartbeat I get to hear at least twice a week and a diagnosis or two and several pending procedures. Oh, and looming, friggin' gigantic hospital and doctor bills.
The suckiest part of all this worrying (well, there are a couple suckiest parts) is that I'm so wrapped up in worrying about stuff I can't change that I obsess and research and forget how to enjoy great stuff around me. I have 2 sisters-in-law who are expecting babies a few months after my baby's due. That should be so fun and exciting, right? In fact, we were pregnant together when I was expecting Christian, and it was so fun. We took belly pictures together and stuff. But what do I do this time? I cry when I'm around them and they're talking about baby stuff. I picture their babies next to mine in a year or so, and their babies are doing all the stuff my baby can't do because of his delays. And my baby will be getting all kinds of awesome therapy from the 3 types of Early Intervention therapists who'll come to our house and work with him and teach me how to work with him. And he'll still be way behind, even with all of his hard work and their hard work and mine. And their babies will just learn that stuff, because they'll try it and they're at the right developmental age for it. And so I'm a horrible, horrible sister-in-law who can't be happy for her family members who are excited about adding to their own families. They're talking about accessories they're buying and stuff they're making and diapers they're stockpiling, and I haven't even bought a single thing or pulled out a single onesie from the storage bin, all because I've been so afraid since hearing those 2 words in the doctor's office--Down syndrome--and making the terribly ill-conceived decision to research stillbirth rates.
I don't like being stuck in this gloomy, self-pitying place. I want to be excited that there's a new little spirit joining our family who'll bring us joy I can't conceive of. And sometimes I actually am. I get glimpses of peace and comfort, but only when I allow myself to, when I shut off the worry roiling in my mind. I read stories of other parents who've started along this journey before me, and I think maybe it won't be so bad. Maybe it'll actually be really, really good. But before I can join them on this journey, I have to get past the scheduled external cephalic version (where the doc will attempt to physically force our baby to tuck and roll into the vertex--head-down--position in my pelvis). And then the scheduled induction if that works. And then maybe I'll get the chance to hold him and kiss him for a minute before he's whisked away for echocardiograms and tests and his own little isolette in the NICU. And I'll get to hold him and feed him and snuggle him in there sometimes before a surgeon cuts him open and cuts into his tiny little heart and stitches the broken parts back together. And I'll continue to worry for a while, because even though the surgeon will have done this procedure hundreds of times before on babies just as tiny and fragile as mine will be, it'll be the first time I will have handed over my own little infant to a team of gowned and masked surgical team members and trusted them to return him to me safe and alive, and I will have a hard time pushing the fear out of my brain that there are always risks involved in surgeries like his. And my friend Lexi promised me just the other day that somehow I'll be able to handle it, and even be strong through it. And the angels who will have accompanied this sweet baby to earth will attend to me while I wait for him to recover. Only the way she told me was so much more eloquent and lovely and believable. And I do believe her, because she's already been through the wringer with her own special little spirit who came to her in a body affected by Down syndrome.
But I'm not there yet. Right now, I'm stuck in this place of worry and wondering about things I can't see yet. And I know that there are people in this world who are worried about things much more serious and difficult than this, but I can't shut off the worry. I can count my blessings, which are so plentiful, but when I'm done counting, I always go back to the worry. Maybe because it's become familiar territory, and we as humans tend to stick with the familiar. I suppose it's a great thing that I only have a few more weeks of this worrying to do before I'm thrust into the reality of it all. I'd better start getting things ready for this little boy.... Maybe that'll make it feel more real, and I can start moving into the part where I feel peace and comfort. It's worth a shot, right?
The reason this feels like such a big deal to me is that, really, this baby so far has been not a whole lot more to me but 5 months of constant puking, overlapped by 5 months of worrying about diagnoses and bad news and more bad news and doctor visits and tests and more doctor visits and then more bad news and pain everywhere and dealing with insurance companies and worrying some more about surgery and wires and isolettes and when and where do we start the clubfoot treatment if he's at this hospital for his heart surgery, instead of the other, free hospital where I had treatment set up, and oh yeah, he's breech and I may need a c-section (which isn't such a big deal, but come on--we've got so much other crap going on with this kid, couldn't we at least skip one surgical procedure?). And my mind always, ALWAYS flashes forward to what other issues will crop up because of the Down syndrome once he's here. Feeding, breathing, gross motor, fine motor, immune deficiencies, bowel problems, leukemia? In contrast, what have I worried about with my other babies? What colors to do their room in? How they'd fit in with the other kids? How overdue they'd be? And I know that this baby will be a huge blessing in some miraculous, beautiful way that I just don't understand right now, because lots of people have told me that it would be that way, and I trust them. But I don't get it yet. So far, he's just thumps and bumps in my belly and a blurry image on a screen and a heartbeat I get to hear at least twice a week and a diagnosis or two and several pending procedures. Oh, and looming, friggin' gigantic hospital and doctor bills.
The suckiest part of all this worrying (well, there are a couple suckiest parts) is that I'm so wrapped up in worrying about stuff I can't change that I obsess and research and forget how to enjoy great stuff around me. I have 2 sisters-in-law who are expecting babies a few months after my baby's due. That should be so fun and exciting, right? In fact, we were pregnant together when I was expecting Christian, and it was so fun. We took belly pictures together and stuff. But what do I do this time? I cry when I'm around them and they're talking about baby stuff. I picture their babies next to mine in a year or so, and their babies are doing all the stuff my baby can't do because of his delays. And my baby will be getting all kinds of awesome therapy from the 3 types of Early Intervention therapists who'll come to our house and work with him and teach me how to work with him. And he'll still be way behind, even with all of his hard work and their hard work and mine. And their babies will just learn that stuff, because they'll try it and they're at the right developmental age for it. And so I'm a horrible, horrible sister-in-law who can't be happy for her family members who are excited about adding to their own families. They're talking about accessories they're buying and stuff they're making and diapers they're stockpiling, and I haven't even bought a single thing or pulled out a single onesie from the storage bin, all because I've been so afraid since hearing those 2 words in the doctor's office--Down syndrome--and making the terribly ill-conceived decision to research stillbirth rates.
I don't like being stuck in this gloomy, self-pitying place. I want to be excited that there's a new little spirit joining our family who'll bring us joy I can't conceive of. And sometimes I actually am. I get glimpses of peace and comfort, but only when I allow myself to, when I shut off the worry roiling in my mind. I read stories of other parents who've started along this journey before me, and I think maybe it won't be so bad. Maybe it'll actually be really, really good. But before I can join them on this journey, I have to get past the scheduled external cephalic version (where the doc will attempt to physically force our baby to tuck and roll into the vertex--head-down--position in my pelvis). And then the scheduled induction if that works. And then maybe I'll get the chance to hold him and kiss him for a minute before he's whisked away for echocardiograms and tests and his own little isolette in the NICU. And I'll get to hold him and feed him and snuggle him in there sometimes before a surgeon cuts him open and cuts into his tiny little heart and stitches the broken parts back together. And I'll continue to worry for a while, because even though the surgeon will have done this procedure hundreds of times before on babies just as tiny and fragile as mine will be, it'll be the first time I will have handed over my own little infant to a team of gowned and masked surgical team members and trusted them to return him to me safe and alive, and I will have a hard time pushing the fear out of my brain that there are always risks involved in surgeries like his. And my friend Lexi promised me just the other day that somehow I'll be able to handle it, and even be strong through it. And the angels who will have accompanied this sweet baby to earth will attend to me while I wait for him to recover. Only the way she told me was so much more eloquent and lovely and believable. And I do believe her, because she's already been through the wringer with her own special little spirit who came to her in a body affected by Down syndrome.
But I'm not there yet. Right now, I'm stuck in this place of worry and wondering about things I can't see yet. And I know that there are people in this world who are worried about things much more serious and difficult than this, but I can't shut off the worry. I can count my blessings, which are so plentiful, but when I'm done counting, I always go back to the worry. Maybe because it's become familiar territory, and we as humans tend to stick with the familiar. I suppose it's a great thing that I only have a few more weeks of this worrying to do before I'm thrust into the reality of it all. I'd better start getting things ready for this little boy.... Maybe that'll make it feel more real, and I can start moving into the part where I feel peace and comfort. It's worth a shot, right?
Saturday, February 19, 2011
3-year-old cuteness
I've said it before, but I'll say it again: 3-year-olds should stay 3 for a couple years, at least. Everything they do (except maybe the major tantrums) makes me want to chew on them a little, from all their yumminess.
The stuff 3-year-olds do is so awesome. They learn how to talk really well and can carry on interesting conversations about a wide variety of topics--both real and imaginary. They build and create cool things out of stuff they should and shouldn't (i.e., Legos or all the blankets and pillows in the house). And they learn how to draw people. Christian drew this family portrait at Joy School yesterday: 
I love everything about this drawing. The legs coming directly from the heads in true 3-year-old fashion. The Amazon proportions of Mom and Dad, indicating our true supremacy as family rulers. The name he gave the new baby--need we even continue our search? The way he tried to write his name, and Quentin's (see the "Q" up to the right of Quentin's head?). The curly hair for the girls and the bald heads for the boys. The fact that Dad is driving a car.
Love, love, love this!
And here's the little artist, after yesterday's dramatic experience getting his stitches cut out of his infected wound. Grrrr. His still-slightly-gaping wound is pathetically being held together with steri-strips, and the steri-strips are held on with "brown glue," a foul-smelling adhesive apparently made of wood rosin or something equally offensive....
And yet, check out that cheesy grin! Yummy!
Friday, February 18, 2011
Different note, different tone
I got another note from a child this morning. It's from my 9-year-old, Quentin.
Here it is:
In case you can't read it, it says, "Dear Mom and Dad [with "Dear" added as an afterthought], Went to school early. Mom, br [crossed out] make me a lunch and bring it 2 me ASAP." He started to write bring a lunch, see, and then decided to specify that I needed to first make it. He's all about avoiding confusion with his demands.
I'm thinking of approaching this in one of two ways: a) either not make the lunch and tell him he didn't sign it so I didn't know who it was from, OR b) not make the lunch and tell him he doesn't pay me enough for that kind of service. Tough call....
(PS: It's his day to go out to lunch with Dad anyway, so don't feel too bad for him that he has such a mean mom!)
Here it is:
In case you can't read it, it says, "Dear Mom and Dad [with "Dear" added as an afterthought], Went to school early. Mom, br [crossed out] make me a lunch and bring it 2 me ASAP." He started to write bring a lunch, see, and then decided to specify that I needed to first make it. He's all about avoiding confusion with his demands.
I'm thinking of approaching this in one of two ways: a) either not make the lunch and tell him he didn't sign it so I didn't know who it was from, OR b) not make the lunch and tell him he doesn't pay me enough for that kind of service. Tough call....
(PS: It's his day to go out to lunch with Dad anyway, so don't feel too bad for him that he has such a mean mom!)
Thursday, February 17, 2011
Sometimes you just can't sell 'em to the gypsies....
....or to the circus, no matter how much you've threatened to do just that in the past 3 days alone.
I was feeling so gross last night (it's the pneumonia or the pleurisy or the bronchitis), and didn't even feel like I had the strength to get up off the couch, so my kids were fending for themselves (Devin had 3 meetings and a Scout Court of Honor). Camille, the One of the Major Attitude, was in my room, and I assumed she was watching some junk on TV. I didn't care like I should because, as I said, I felt gross and had no energy. When Devin came home much later and went to our room, he came back out and said, "Did you see what Camille did in here?" Oh, no, I thought. What food did she smuggle in there this time? Could it be worse than the graham crackers and Nutella from last week? On my bed? "No," I said. "What'd she do this time?" And he handed me this note:
Can you read what it says? "Dear Mommy, When you told me you weren't feeling so good I thought of all the nice things you do for me. I decided it might help if I did all the laundry. I [heart] U. Love, Camille." I cried, and then I went and kissed her face as she slept.
So, you see, I can't sell her now. Amazing how one sweet act from a kid erases hundreds of their rotten ones from the recent past.
PS: Now that I know how well she can fold laundry, I should probably take full advantage of that knowledge, huh? No use in not exploiting your kids' abilities, I always say.
I was feeling so gross last night (it's the pneumonia or the pleurisy or the bronchitis), and didn't even feel like I had the strength to get up off the couch, so my kids were fending for themselves (Devin had 3 meetings and a Scout Court of Honor). Camille, the One of the Major Attitude, was in my room, and I assumed she was watching some junk on TV. I didn't care like I should because, as I said, I felt gross and had no energy. When Devin came home much later and went to our room, he came back out and said, "Did you see what Camille did in here?" Oh, no, I thought. What food did she smuggle in there this time? Could it be worse than the graham crackers and Nutella from last week? On my bed? "No," I said. "What'd she do this time?" And he handed me this note:
Can you read what it says? "Dear Mommy, When you told me you weren't feeling so good I thought of all the nice things you do for me. I decided it might help if I did all the laundry. I [heart] U. Love, Camille." I cried, and then I went and kissed her face as she slept.
So, you see, I can't sell her now. Amazing how one sweet act from a kid erases hundreds of their rotten ones from the recent past.
PS: Now that I know how well she can fold laundry, I should probably take full advantage of that knowledge, huh? No use in not exploiting your kids' abilities, I always say.
Wednesday, February 16, 2011
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.
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.
Monday, December 29, 2008
Slurp!
We took the kids ice skating tonight at the outdoor rink in Midway (about 10 minutes away). We had a really fun time, although my back and arms are SORE from bending over to help Carinne for such a long time! Some of the kids protested before we went, lamenting that ice skating would be SOOO boring. But everyone had a fantastic time, and, of course, didn't want to leave to come home!
On our way home, Christian was doing this "slurp, AHHH!" noise in the car, and Camille joked, "Christian's drinking air!" We all giggled, and then she exclaimed, "He's not drinking air; he's drinking the snow off his boot!" I looked back there, and sure enough, the little monkey had pulled off his boot and was sucking the (dirty) snow off the bottom of his boot! Ewwww! What a disturbingly resourceful little guy! I grabbed the boot and we got him a big drink of clean (!) water the moment we got home. Too funny!
On our way home, Christian was doing this "slurp, AHHH!" noise in the car, and Camille joked, "Christian's drinking air!" We all giggled, and then she exclaimed, "He's not drinking air; he's drinking the snow off his boot!" I looked back there, and sure enough, the little monkey had pulled off his boot and was sucking the (dirty) snow off the bottom of his boot! Ewwww! What a disturbingly resourceful little guy! I grabbed the boot and we got him a big drink of clean (!) water the moment we got home. Too funny!
Subscribe to:
Posts (Atom)