the real deal holyfield

back! and with double the kids!

2007-08-30T15:28:00.001-07:00

Hey everyone (or no one? Knock, knock), yep I’m still here. We had another baby girl! She is almost two months old. And as for her big sister, she is doing great. She just started crawling (hands and knees, the real deal!) a couple weeks ago, and now she is starting to pull herself up on stuff and just in general is blessedly & sometimes frighteningly mobile! Good, good times.

We did have something of a minor scare with the pregnancy with #2, as the Quad screen came up positive for down syndrome(as it did with daughter #1), but this time 1:200 odds (Daughter 1 was 1:100). We were offered the amnio, but we didn’t take them up on it. (we did get the amnio for #1, and it ended up being a HUGE help in dealing with things emotionally, check my early archives for that story, leave it said for now that dealing with that roller coaster before, as opposed to after, our amazing daughter's birth, was incredibly beneficial for us & for her.)

Anyway, we were (and are) so educated on these things now, that we knew the odds (1:100) for a miscarriage from the amnio (which they were recommending), and we weren’t prepared to take that risk just for the comfort of knowing, because obviously, being parents of a child born with DS, we were aware what an incredible blessing (as opposed to incredible burden, which our genetic counselor tried to convince us of) a child born with down syndrome is. (all children are a blessing, but I think any parent of a child born with DS can relate, these kids are magical, they bring something to life that is astoundingly unique, and, well, I am continually speechless as to the degree to which my first daughter brings an unquantifiable amount of endless joy into our lives.) Long story short, we didn't NEED to know.

Anyway, fast forward to delivery and daughter #2 shows up and she does NOT have trisomy 21. needless to say we were relieved, although of course we would have welcomed and loved with all our hearts another daughter born with Down Syndrome. We are (and were) very excited, though, at the prospects of the girls being able to mirror each other, and learn so much from each other, and they’re so close in age (just about 13 months apart), that we know they will be great companions and mutual support system for each other as the years (and their lives) go by. I just know in my heart that each and the other will be blessed in ways we can't even predict by growing up together and being able to relate to their individual outlooks on the world.

Anyway, both daughters are doing great. As mentioned, daughter #1 is keeping us VERY busy, with all her fun crawling and grabbing and learning and yelling and she’s eating lots of solid food and feeding herself with her spoon and chasing the dog around the house, I could go on & on, and I will, hopefully, in another post. As for daughter #2, she is sleeping ALMOST through the night (just one or two nursing sessions a night, now) compared with the hourly wakeup calls that were the norm the first few weeks. She is adorable and has the most amazing smile which she blesses us with more & more often, as she cries less and less often. They say that if your first child is very mellow & doesn’t cry often, you’ll get a screamer for the next one, and they were right in our case. I wouldn’t label #2 necessarily a screamer, but she is not shy about being vociferous in getting her point across if she is at all disappointed in any facet of the current proceedings!

Anyway, that is the 90 second (er, 500 second?) update. We are extremely happy, extremely busy, and supremely blessed. More later, but here are some updated pics! Hope all is well with all of you, whoever & wherever you are.

pictures!

2007-03-19T12:13:00.000-07:00

hey all, I just noticed I have not put up any pictures of our amazing little girl since she was like only a month old!! nigh inexcusable. anyways, here are some more recent ones, from around Christmas time, so she is currently even bigger than these, but give you way better of an idea than the ones way below, wow can't believe she was ever that little! We officially put her baby car seat in the basement yesterday & told her say goodbye, won't see this again until baby sister comes! wow wow wow.

okey doke folks, hope all is well, keep on keepin on, etcetera etcetera, aloha.

I have not posted in 500 years, I know

2007-03-16T18:28:00.000-07:00

wow, i have been conspicuosly absent, but blogging is supposed to be an unregimented and unscheduled type thing, so I won't apologize, simply acknowledge, so there ya go.

well, our little girl is doing GREAT. She is now 9 and a half months old, can you believe it? I certainly can't. She is sitting up, and can even stand on her two feet with assistance! once she gets the balance part down she'll be all over the place. what else, she's eating solid food, is now on gerber 3 actually, and ummm, got bumped up to the big girl car seat, totally outgrew her infant seat.

and big news! my wife is pregnant again and we are going to have another daughter! wheee! so far so good; She is about 5.5 months pregnant, due on July 1. We are SO happy that our little girl is going to have a baby sister, fun fun fun...

well, i guess that's it for now, i just figured out how to get back into this blogger account and figured I might as well ramble some stuff while I'm here. will have to start perusing some of the blogs to the left and seeing what is what with all of them.

hope all is well with YOU, dear reader, wherever & whoever you are. alooooha.

pining for the fjords

2006-11-11T02:28:00.000-08:00

Ah yes, hello people of the internet, well I was just crying my eyes out like a little lamb (do lambs cry?) all over watching an episode of signing time. Let me set the table for ya, well, my wife and child are out of town, gone a little over a week now, and I miss them terribly, especially the little one. I miss my wife too, but it just gets me thinking about what I’m missing with our little girl. When we planned this trip, we were so young and unknowing (ah those were the days of 3 months ago) but seriously, as a new parent, I think it is impossible to realize at the time when your child is say 1 or 2 months, just how much of a distinct personality this child is going to have at 3, 4, 5 months, how much of a little person they are going to be already! And how you want to be there for every minute, second, nanosecond to record observe and cheer on and hug and kiss and cheer and smile and love. Sigh.

Anyway, dang, I’m recording these signing time episodes off the tivo to clear out room on the DVR, putting them onto videocassettes so as to keep them for our little girl to watch again and again, and honestly, I’d watched bits and pieces, but I’d never really sat down and watched one, ya know? Well, I watched most of this one, and was blown away with how much I was affected with just seeing the kids sign, and thinking of my little girl, and her signing, and her learning things, and interacting with the world, and here I am an ocean away. And THEN the host starts singing this song about “you shine, you shine” all about, apparently, children with disabilities, and how kids do things at their own pace, and this kid will do that when they do it, and it just drop floored me to tears, and the interesting thing is that I was crying not for any type of reason involving feeling bad for my little girl, nothing like that, I was crying about thinking her doing those things when she’s ready and what if I miss them, and crying tears of joy just thinking about how true it is what this lady was saying about “I’m so glad you’re mine” and seeing clips of moms & dads kissing and hugging their kids as they smile and learn and interact with the world, at their own pace, and how blown away the world should be, and is, I guess, by any kid with a disability, about the bravery involved in that, and how our daughter, she’s just so brave by nature, it’s not something she thinks about and does (or maybe she does?) but it is so instinctive, her survival instinct, her zest for life, she doesn’t know anything’s different about her, she just wants to enjoy herself and smile at Mommy & Daddy and play with her dolly and laugh and make cute little sounds and all the millions of things that she’s going to do as she lives her beautiful life.

Wow. I love, love, LOVE, being a father, and I miss my little girl, and my wife, but absence makes the heart grow fonder, although I doubt that’s possible at this point (ie I’m at maximum fondness), but hey, whatever gets ya through the day. Reunions are always a blast, the excitement, the catharsis, the satisfaction of verifying in the actuality what you never lost sight of in your heart, yup, good times ahead, and that’s not to say I’m laying up feeling bad at all times, no, no, I talk to them every day, hear my baby’s sounds and babbles and coos and aahs and cries and whimpers and get the updates, but it just ain’t the same as being there, but I’m a tough one and I do my thing and life is for trooping through and living the dang thang, right? Reeeiiigghhht. So enjoy it, okey doke, more knowledge (or vague imitation thereof) in the next few days.

extremely delayed presence apologies extended verbatim

2006-11-07T12:40:00.000-08:00

orrr, something like that. howdy! wow i have not babbled here for some time. well, well, well. yes! i finally told my family, and they were increddddibly supportive, it made me cry tears of joy, it was really really gratifying. my mom responded to the email with this beautiful email directed toward our daughter, telling her how much she loved her, how lucky she was to have such great parents, it was really great. my sister who has a kid has really jumped over the net, researching and learning more about DS, and I was surprised to find out that a friend of a friend of hers actually has a little boy born with DS who her daughter (my niece) has had a few play dates with. wow, small world.

wellll, our little one is doing exceedingly well, she is 5 months already!! wowsers. time does indeed fly. every day it seems like she's doing something new, displaying some new fantastic skill, every smile is just an unbelievably beautiful moment. fatherhood agrees with me to the nth degree. such a cliche to say you never really know what it's like until it happens to you but truer words I doubt were ever spoken.

more news hopefully sooner rather than later. how are all of you? did you go vote? i haven't, but will, throw the bums out, roll the new bums in, or vice versa versace. peace/mahalo/muchas gracias.

yup, still here

2006-08-28T18:18:00.000-07:00

hey everybody, well, once again I seem to be typing stuff in this long vacant space after an extended absence for which I have no discernable nor credible explanation. Oh well, que sera. Our little girl turns 3 months (!) tomorrow, and we are shocked & awed in disbelief that the time has flown by so, uh, quickly. Kiddo is almost ready to be turned longways in her crib fer crying out loud. She is an absolute joy and the mellowest little lovebug, she wakes up and stares up at her mobile and always just chills out and has her time before hollering that she wants breakfast. Then she starts making little sounds, letting you know that hungry time has settled in. then I go pick her up and snuggle her and kiss her and tell her how beautiful and what a cutie pie she is, and then she eats and swings in her swing and lays in her pack n play and does tummy time and smiles and makes little cooing sounds and looks around at everything and opens her eyes wide and makes the cutest possible expressions that could ever be possibly made in the universe. And maybe about 1% of the time I stop and think and remember she has down syndrome. Wacky!

Really the only thing that reminds us of said fact is her weekly visits from easter seals fantastic physical therapist, who puts her through a nice regimen of babyrobics. Other than that, wow, blessed is not even the word to describe, I mean, doesn’t cover it? Our physical therapist, whose girlfriend has a child with DS, and who works with LOTS of kids born with DS, told my wife that our little girl was the first that he’d met/worked with that DIDN’T have to have any heart surgery. I seriously still look at her sometimes and think “does she really?” but hey genetic evidence shows the three lil buggers on numero 21.

And we STILL have not told anyone. Wacky! (word of the day) NOT cuz we are ashamed, NOT cuz we’re afraid (ok, maybe a little) but I don’t know, I really don’t know, it’s like, once the cat’s out of the bag, it’s out, and you have to acknowledge it, and talk about it, and blah blah blah. She’s a little girl, she’s healthy, she’s lifting her head and cooing and aahing and looking and smiling and doing all the things that cute little girls do, so, um, sigh. Yup, reality is to set ASAP, though, this I know. I will be telling the folks mighty soon. Really. Seriously. Shooting for 6th birthday? Har har. Sigh shalom etcetera.

Other than that mild stressor, the anticipation of releasing the NEWS, (yes, yes, you’ve heard it before), and that is prolly why I have shamefacedly not posted as much?? Other than that all is incredibly well. We love parenthood, we love staying up late and feeding her, and laughing with her, and laying around with her, and going on walks with her, and watching her discover the world around her. I think that is the part I love the most, every “first” time she notices something and starts interacting with it, be it a toy hanging in her pack n play, her mobile, her stuffed turtle, the stained glass lamp by the door, the dog, the wall, a streetlight, the people shuffling this way and that as we cross a busy Waikiki intersection, just seeing her so interested and absorbing and fascinated and happy and smiling and wondering and curious just does this Dad’s heart so so so so good. Er, well. Er, positively enhanced. Whatever. I like it.

back on the scene, crispy and clean

2006-07-20T17:19:00.000-07:00

Hey all, a quick update before I head home for our first early intervention baby workout via easter seals! Woo hoo! Our little girl is getting very good at lifting her head and looking around and grabbing stuff and looking at things and eating and getting bigger and being a happy healthy little girl. Down what? Pshaw! Naw, but really. Well, yes, so, a physical therapist as well as a counselor will be coming by today and putting her through a phys ed class so to speak. Looking forward to seeing what they do, how they do it, etc. we try and do regular “tummy time,” supposed to be really good for developing muscle tone, but will be great to get a glance at the quote unquote experts at work

I knooooww it’s all over the net and unless this is the first DS site you’ve looked at recently you prolly know all about it, but just unbelievably inspirational, these two people with DS getting married, article in time magazine online, and from what appears, in the actual mag as well. Yes I will be stopping by my local newsstand and grabbing a copy. Tear jerker express or what? Let’s just say it was getting dusty in here, especially looking at the photo essay. Good stuff! Good for sujeet & his new bride. I actually first bumped into his website waaayyy back when we were struggling with the “decision” that had been presented to us by the powers that be that keep the gates of reality for the unborn that dare to not be protypical tim or tina. Anyway, sujeet was and is and appears will always be an incredible inspiration and so is his lovely wife. All the best to them.

Annnnddd, what else? Well, we’ve decided to start little one on the nutrivene, at least in very limited doses, at about one fourth of recommended dose to start & work our way up & see how it goes. Let the arrows fly! I know this is a controversial subject. I’ve been on a TNI yahoo group that bounces around a lot of useful info, and I’d be curious to here more feedback in re: the pros and cons. And I know there are a lot of both out there….

Take care of yourselves and your little (or big) ones, and I know it sounds soooo like an empty promise, but I will try to update more. Writing tidbits like this has unfortunately taken a backseat to writing the next great film of our time, aka Casablanca meets spaceballs. No, well, there was another better analogy, but it’s elsewhere on the net and would reveal my secret identity of a midnight marauder’s helpful aide and confidante. Scratch that. Aloha mahalo etcetera and que sera.

flux capacitor.... fluxing

2006-06-28T11:21:00.000-07:00

hey dad, you gonna shave sometime this year, or what?

Hi Auntie!

commffffyyy

Hey there, sorry (even though you’re NEVER supposed to apologize for not globbing, but I’ll break precedent) for my prolonged absence from this here space. All is well, the little girl is doing fantabulous, she’s got a pediatrician appointment tomorrow at which point we’ll see if her fantabulousness is continuing at its current pace, which of course it naturally of course most definitely is in regards to her incredible essence as this beautiful little being, now the hope is that the health front will keep up with the magical essence side of the coin, and at this point, well, it is.

Wellie now, here it is a day or two later after I wrote the above. So. The kid is doing great. We took her into the pediatrician yesterday, and her thyroid is looking A-OK, her platelette count is up in normal range, the only thing really is that her muscle tone is a bit on the low side, but I swear she’s getting stronger every day. It is truly amazing, every day the kid looks more like a kid, you know what I mean? She’s still a baby, obviously (1 month tomorrow) but I hold her and look down into her little eyes and there’s more and more awareness & more & more distinction and it’s like, wow, I’ve got a little daughter here, she’s really starting to take note of what the world’s all about. Hope she likes what she sees.

The visit from my folks was great. My sister came out as well. A good time was had by all. They all fell instantly in love with the little one of course, and everyone cooed and oohed and aahed and squeezed and pinched and kissed, etc. We’re still on the chicken little side of the equation and have not told them about the DS. The rationale, which I think I mentioned in an earlier post, was to let them soak in and fall in love with the baby without any prejudice or preconceived notions, just grandparents and auntie meeting baby. And it went swimmingly, so much so that it’s scary to do anything to break the magic bubble, har har.

I’m getting ready to make the call though. Tell my folks the real deal lennox lewis. Was going to do it this week and drop the news on them but they’re leaving on a month long trip to the east coast and Europe in a couple days and it just didn’t seem fair to tell them right before that. One more month won’t a giant difference make. Let them enjoy their trip and I’ll tell them when they get back. I promise, yes, I will tell them when they get back. It will be a relief. I swear on the ancient moonstone of Babylon.

It’s funny, because to us, it’s just not a big deal any more. She’s doing so well, she’s just like any other kid, to us at least, so I find myself forgetting that she’s even got “it.” I know it’s unfair, though, to both my family and her, to wait too long, because I don’t want sneaking suspicions to grow over time or uncomfortable situations or yadda yadda yadda what have you. Get it over and done with I will, yoda said.

Anyway, besides that little bit of background drama, all is well. The little one is feeding like a champ, drinking more every day, we put her down for her “tummy time” a few times every day, which sometimes she loves and sometimes she hates. She was especially angry at us last night after an extended tummy session during which she screamed and cried, but hey kiddo, them’s the breaks. It ain’t all flowers and bunny rabbits, no pain no gain. She’s a tough kid, though, she made it this far, and she’s kicking ass, taking names, and I have every optimism that that trend will continue.

Hope all is well for you all. Aloooohaaa.

guttentag

2006-06-14T18:34:00.000-07:00

hello, I have not written here for quite some time. The baby is doing fine, better than fine actually. Very very healthy, we are very very blessed. Above is a picture of her just one or two days old, when we were still at the hospital. She's a little over 2 weeks now.

Thyroid test came back today with the all clear. Heart is perfectly normal and healthy. Blood platelette count was down a bit last week but now within normal range. Some jaundice in the week after birth but that’s been cleared up. Aside from the jaundice and the platelette count, both resolved, and both apparently not linked in any higher rate of occurrence to down syndrome, we have had virtually no signs of any health problems, despite quite thorough checkups and monitoring. our pediatrician has been ON IT, and we were happy to hear the easter seals people (see below) sing her praises as well.

Seeing as to the fantastic health we have not yet started nutrivene, pediatrician took a look at the bottle but said to hold off, that most of that stuff is in mom’s prenatal vitamin. I looked and there’s way more stuff in the nutrivene, but does a baby that for all intents and purposes seems to be doing absolutely fabulously need those extras? Is mother nature of the third chromosome exerting a hold toward something unforeseen? We shall live & we shall learn. As shall she.

Are we crazy? We still have not told anyone (besides, obviously, health professionals) about the Down Syndrome. The few people that have visited the baby have exhibited no suspicions, whether or not they have any? She seems like any other little baby to us, but we are first time parents, so who knoew? We were kind of tripping out, she doesn’t have the one line across her hands that is common with the DS, but the “M” like mom & dad. Interesting…. We find ourselves wondering, "does she really have it?" but the results of the amnio were crystal clear. three very distinct squigglies on numero 21. Things will likely manifest themselves later? Or not? But, hey, why paint the little one in a corner, as long as we are getting good medical care & they are aware, and we are taking advantage of services for her (already had a visit from easter seals and they’re working up her OT and PT program).

My parents and sister land tomorrow for a meet & greet with the new addition. I am sure the little one will charm the pants off one and all.

What else? As said, we are very blessed, very busy, and very happy. hope all is well for all of you and your respective bundles of respective joy, as well as any other entities important to you. salud and selah.

first the kierkegaardian version

2006-06-06T15:22:00.000-07:00

Well. I am now a father. It feels great. I am a bit tired. Sleep is at a premium. Work is on hold except for slight inclinations back toward the dollar, like right now. Er, right then. She is a beautiful little girl, innocent to the evils of the world, at least for now, and every time I look into her eyes all I see is love. And myself. And my wife. And the possibilities of this spinning orb of solid matter, how something so seemingly inane and inconsequentially disregarded (ie the chaotic surface of our fair planet) can produce this little being with little hands and little feet and little eyes that when they look at you you just melt because there is nothing like it, no feeling on God’s green earth (astronomy corner, gracias) to even compare, and you know you will do anything and everything of what could ever possibly take to protect this little being from the wherewithalls and pitfalls of the world (Gaia again?), and there will be successes and there will be failures but one thing that there will assuredly be whether the sun is rising or setting (Helios says howdy) is the feeling at the core of your being that you will fight for the side of the right, fight for the sanctity of this child’s life and happiness and moments of clarity unto death or the at that inopportune moment when your grilling up a fajita & the gates of purgatory come knocking with the nonchalance of a traveling salesmen selling goretex materials from outer space. The nonchalance being purgatory’s messenger’s, not your own, because inlying within those emotions and pathologically metered understanding nodules will be a passion unknown since x first encountered y and decided that z wasn’t such a bad idea after all, nay, verily, the best ever considered and action plan thereby enacted.

pics & more info to come.

the home stretch

2006-05-19T14:36:00.000-07:00

Hi all. Well the baby’s room is just about ready, just have to haul a big ‘ol desk outta there, need help from a buddy who ALSO has to help me get a bunch of his crap outta our basement, but that’s another story. but the walls are painted, the crib is assembled and made, blankets, stuffed animals, cute little outfits hung in her closet, giant stuffed panda in the corner for company, there’s some knicks and knacks left to go, but we’re just about ready for the anticipated arrival.

An arrival that is approaching very quickly! Her due date of June 8 is officially less than 3 weeks away (2 weeks & 6 days)! Whoah. Wild. We are very much looking forward to meeting her.

Still haven’t told anyone about the DS portion of the story, we’re still positive in our decision that we should give her a chance to meet the family and cuddle up & charm the pants off everyone before they mentally put her in some category which will just be a small portion of who she is.

My wife’s sister was gonna be in town for the birth, but she’s not gonna be able to make it now, so it will just be she & I, which although the support would have been nice, the drama of having to go thru everything so close prior to the birth will thereby be avoided, allowing us to concentrate on meeting our baby, holding her, looking into those beautiful eyes, and getting to know her before we have to worry about factoring in the outside world into the equation.

One more minor complication has arisen. My wife’s been diagnosed with group B strep, which I guess is quite common (something like 20% of births?), and just requires that antibiotics be administered before the baby comes thru the birth canal. The antibiotics pretty much eliminates any risk to the baby from the strep (there’s no risk to Mom, apparently), and from what I’ve read, even without antibiotics, only like 1 in 200 babies are affected (ie get sick) in cases like this, the antibiotics being pretty much a safeguard measure to filter out the small remainder of risk. As with the DS, it’s nice to know in advance, but sometimes you think that the miracles of modern medicine, the knowing in advance of so many things, despite making the process of giving birth so much safer, give us so much information that can be so overwhelming. It makes you wonder how anyone gave birth 100, 200 years ago. They were ignorant and happy, but hey, infant mortality rates were much much higher. Guess you have to be grateful for the knowledge we are able to have nowadays, although it can make for a few anxiety ridden sleepless nites. Oh well, if ignorance is bliss, knowledge is ice cream. Er, or something like that.

Anyway, even though we knew it was a minor thing and very manageable (the strep diagnosis), it was still a little nerve racking to take, one more thing to worry about, but as with anything else, information, (irony alert!) while being something that can cause anxiety and grief, came thru in the clutch again, and after reading up on the strep, I think we’ve got it squared away and understand that it’s a very minor thing that just needs to be kept an eye, that odds are (99.5%!) that even without antibiotics, she’d be fine, but hey, let’s eliminate that .5% while we’re at it, long as it doesn’t hurt matters.

As far as the baby herself, all signs are pointing to her being very healthy, her growth is great, heart rate going strong, she’s still moving quite a bit, and 7 pounds already! (which was last week, probably gained a few ounces since then?) So, more than anything else, despite all the medical gobblydegook, we’re excited. We get to greet the baby (we have a middle name of Maria confirmed, still bouncing ideas for the first name, although we are almost sure we’ve got a winner) and hold her and kiss her and take her home & put her in her crib and play soft music for her and change her diapers and love her love her love her. Then, a week or two later, when family starts filtering in to visit & say hello, we think about how to approach the news. Bridges were made, after all, for crossing, not for standing on one side and worrying all night about getting across the darn thing. Not that there isn’t something to be said for at least kicking the rail to make sure it’s safe, though. And with that, I bid you adieu for the nonce. Be safe, good, and go hug & kiss your kids. Aloha.

I am still in existence and available for correspondence, btw go clippers...

2006-04-24T13:55:00.000-07:00

I had a war with a very small dog last night. Well, not extremely small, not like a chihuaha or something, but a midsize shitzu, it peed I yelled I hit it barked it ran I ran I stalked it whined, it was probably the opposite of majestic, in that 2 AM sense of grandeur notwithstanding.

And there, an opening befitting someone who has other things on his mind than the fact that his baby girl of about a month & a half away has been diagnosed with Down Syndrome. And that’s me, I mean, we think about it, talk about it, but were so in it now, and content with it, and loving this little girl with all we have, that it has become part of us to the degree that it doesn’t dominate the mental platform.

Little girl is still kicking up a storm, moreso. We are very optimistic, therefore, in regards to her muscle tone. Fluid levels great. 70th percentile as far as growth! her legs are a little small in relation to her body, 24th percentile, but according to the doc that’s still within normal parameters. We are stoked. We did the tour of the maternity ward yesterday, saw a sample of the room my wife will give birth in, the nursery where they whisk baby away to put her in a burrito wrap, the recovery room, etcetera.

Getting baby’s room at la casa ready continues but has been backburnered a bit as mommy finishes up her final semester at the university. We’ve got the pink up as the main dish and still have to get the white on the ceiling and trim as the dessert. We’ve got crib, pack n play, stroller with car seat, all kine stuff from Carter, blankets, outfits, crib stuff, sheets, you name it. Well, we still gotta stock up on some stuff. Bottles, man, I had no idea how many diff kind bottles there are. You got this system that prevents air getting in there, and then you gotta pick out the baby carrier, and their little bathtub, yadda yadda yadda.

We are excited. Think we’ve got the first and middle name locked down, as well. Sorry, but that’s classified for now. We’re excited, we’re gonna be parents, it’s a beautiful thing.
I got other thoughts and random observations about the experience, as well as some concerns and issues I’d be curious to bounce off the innernet sounding wall, but for now I think I’ll leave it at that. Thanks for stopping by, and extra thanks to all the kind folks (especially kim, who came back and dropped additional knowledge) who offered advice on the telling the family issue. We still haven’t told a soul, we’re still debating how to handle it, some family will be here, and obviously it makes sense for them to know at least a little in advance so we don’t have to go thru the drama at the same time as we’re getting to know our baby girl, so we’ll see. Hope all is well in everyone’s yards. Aloha, gracias, be safe kids…

sometimes I rhyme slow, sometimes I rhyme quick...

2006-03-27T17:30:00.000-08:00

Hiya. How ya’ll (computer screen) doin?? Gude, I hope. Pardon my misspelling of the word good, I like to do the same thing with prolly and tonite. Hope it doesn’t bodda you too much, har har. Excuses, excuses, pork chops & apple sauce, all that gude stuff.

Anyway on to the business at hand. Well, as you can see, I’ve written less & less in this here space, and I really think it’s because I’ve had less and less concerns?? Or just the fact that reality is settling in so much that it is no longer a thing of which to think overly? Not sure. Still think about it of course, but, eh, you know, or you don’t, either way, it’s cool.

Well, we did come to a decision of sorts. We have decided, at least until we change our mind, which I don’t think we will, to not tell anyone about the fact that our unborn child has down syndrome. Screw it. Ha ha. No, seriously, but really. Our reasoning: we do not want people to see our child as a condition, but as a child. Yes, of course, after they meet her, interact with her, fall madly in love with her, which they must! Of course, then, we will inform them of the trisomy 21, but call us crazy, we just cannot stomach the idea of all our family having this gigantic preconceived notion of our future bundle of joy when and if this notion may not bear fruition and, well, I dunno, that’s what we’ve decided.

We even had this whole letter written up, telling the news, letting everybody know, and we thought, you know what, why we doing this? Our real inspiration was this online article that I found. It’s about this couple that found out post natally (after birth for you non latin majors) that their baby son had DS. Well, one side of inlaws was there, at the birth, so they knew right of the bat, but the other side of the family, they didn’t want to announce it to them until they’d been able to see their newborn son.

Ms. Lim Messina's family had been present at the birth and were aware of Evan's condition. But with Mr. Messina's family, they said nothing about Down syndrome until four months later, when they traveled to New Jersey for a family visit. They wanted the family to meet and play with Evan first. Only then, once they had held him in their arms, did they tell them that Evan has Down syndrome. The reaction, says Mr. Messina, was supportive.

I think this following quote really clinched it for us:

"I wouldn't send out a birth announcement saying that my son, the pre-diabetic, had been born, or that my son, who has a genetic predisposition to obesity, had been born," said Mr. Messina…

which makes perfect sense! Our daughter is a little baby, a beautiful girl, a young life that will blossom into whatever she chooses to do within this world, she is any number of a million different things, one of which is associated with the fact that she has trisomy 21 also known as down syndrome but she is not “down syndrome.” And like it or not, once people hear that thing about her, if they have not had a chance to meet her and experience her presence and get to know her without the shadow of the context, especially in light of social stigma and the popular misconceptions and archaic prevalent thinking in reference to this part of her, people will judge her by this and categorize her by this and not get to fully experience the richness that is HER, SHE a small little PERSON, who is unique and one in a billion and all those other good things that a proud father loves to say.

Okey doke, I’m done babbling at you (Hi wall!) for now. Tell me what you think? Or not. have a good one, nonetheless….

in response to popular demand....

2006-03-17T15:28:00.000-08:00

Here she is, in all her glory, our beautiful little girl.

oh PS: we got great news at the pediatric cardiologist yesterday, he looked & looked and as far as he can see, her heart looks normal and healthy, although he did recommend another heart echo after she's born. This was obviously awesome news and a big relief.

Also, she's still kicking up a storm. We read somewhere that at this stage (after 6 months) you should feel once in the morning and once at night, to make sure the baby kicks at least 5 times in an hour or something like that? well, she kicked 5 times in about a minute as I felt my wife's stomach and drifted off to sleep.

I can't wait to meet her.

Howdy

2006-03-14T12:37:00.000-08:00

Well, wood knocking notwithstanding, we got a little scare at the last doctor visit. They saw something they were a little suspicious of in our little girl’s heart, and while even if it is something to be concerned about, it is still very minor, but it will still potentially require surgery, which is of course scary. Something about the line being too straight which separates the heart chambers. All the blood appears to be flowing properly through and in between the various areas, but, to be safe, we’re seeing a heart specialist in a couple days, so I guess we’ll know more then. It’s funny, (well, maybe not very) but you get yourself into the mode of thinking that everything’s fine, that your baby is just that, a baby, a normal little baby, and then they’re talking about heart surgery, minor as it is, but is there such a thing as minor, routine heart surgery? I guess there is, but, well, you prolly know what I mean. Or not.

One cool thing we did get from the visit was a beautiful 4D image of our baby girl, which we have framed in our bedroom. Her little head and her little fingers in her little mouth. During the 4D scan, which is like a sonogram but with another dimension (time), with incredibly vivid pictures, almost like a brown & white video playing, we saw her looking at us, sucking her thumb, moving around, the whole nine yards.

Anyway, just wanted to drop a little update as to what was going on. We’re keeping strong. Still haven’t told anyone about the situation. We’re gonna tackle that later this month. I have got to start working on writing up a letter we’ll send out to everyone in the family, giving the news in as gentle way as possible, with as much positive information that at the same time doesn’t overwhelm. There is so much about Down Syndrome, as I have obviously discovered, that is just not understood by the general population, and I guess that we have to let our families go through the process of coming to understand that, as we have. Not that it makes it any easier. Part of me wishes we’d told everyone right from the start, but it was hard enough to get through at the time without dealing with that aspect of it as well. I’m glad, actually, that we did it this way. Everyone has an attachment. Everyone is geared up to love this beautiful little girl that wants to be in this world so badly. If this bit of information changes that for anyone, well, that’s just their loss. I don’t think it will, but, hey, people are people, and they consistently surprise you as we wander through this phenomenon of life, in good ways & bad.

Hope all is well for everyone reading this, and I’ll try to drop another line or two sooner rather than later.

It's been a long time, I shouldn'ta left you, without a dope beat to step to...

2006-02-21T18:54:00.000-08:00

Heyya. Been a bit. Thought I’d drop a bit of updating in this here spot. I can’t believe I neglected to mention it in the last post, but there was some very good news during our last visit to the doctor’s office, not our regular obgyn, but where we went for genetic counseling, and where we get the sonograms, well, anyway, couple weeks back we went in for what they call a fetal heart echo, it’s wherein they get some really good views of the ole ticker and see how it’s doing. Well, our lil darling, her heart is pumping and bumping away, and there are no signs (furious wood knocking) of any trouble. Even if there is some trouble, the doc says, it’s minor, meaning that if there was anything really really serious, like valves being connected to the wrong chambers or things like that, we’d know already. Ditto with the stomach and kidneys, all appear to be in perfect working order, at least at this stage.

We have another visit in a couple weeks, so hopefully things will be similar in the good news arena. The baby is kicking like crazy lately! She definitely wants to be here. That was one of the things my wife and I discussed the most, amid torrents of tears and fear and self doubt, during going back & forth about what to do, what if there were health problems, what if we brought this child into the world that had serious physical ailments and would resent that we ever brought her here to suffer?? Well, that does not (at least for now) seem to be the case. She is knocking on the door and appears to be anxious and eager to join us in this world whether the other kids and the world at large are going to be nice to her or not.

We told the family and everyone else that seemed to be required that we are having a girl. We have told no one yet of the down syndrome factor in the equation. We still have four months to go until the birth, estimated at June 9th at this juncture. Everyone is suitably excited, according to my master plan. Let them build emotional attachment, so that theoretically when they hear what will probably be at first very frightening and devastating news, they will already have invested themselves in this child and will be much less likely to write her off (not that, I hope in my heart, they ever would have anyway?? But you never know, even about your closest and most loved, until the chips come down, what will happen?) we keep reminding ourselves that when we do give the news to everyone, that we must be patient and non judgmental of people’s initial reaction, that the common perception of down syndrome and that of the potential of people with said condition is about a thousand degrees off base and that it is now our job to educate those around us, and our daughter’s future extended family, that she is, yes, going to be a little different, but still a child with unlimited possibilities and love to give and should be treated as such and given equal if not more love and caring and respect in return. Don’t take my daughter lightly, said Joe Malone, I guarantee she will surprise you in her capacity for things of which were never considered that she could do, he said with just the slightest bit of fear and trepidation and the largest amounts of hope and love and awe for the miracle of the creation of life.

I don't pretend to understand all of which I say...

2006-02-10T18:28:00.000-08:00

Wellie wellie well. Hi there. Thanks to the two commenters for saying howdy back (or prior) to me. All is well, you know, considering. We’re still freaking out here & there. Her more than me. She wonders if it’s something she did, if she was too stressed when we were trying to conceive, I reassure her that it was nothing either of us did, just a quirk of fate, that we should be happy this baby is coming to us, that we will take care of this baby, who will need special attention (something that all babies need, I remind her), and it is a blessing that this innocent little child is coming to someone who loves her and is ready for her and will educate themselves and do the best for her that they can possibly do. I admit that I have my moments of worry & concern as well, often, in fact. It’s hard when you look at little babies (which seem to be everywhere all of a sudden) and they all look so normal, which is of course relative, but I wonder, why them, why us, and then I know, or I think, that’s just the way it is, not that I necessarily believe in God per se, but I do believe that things happen for a reason (the hell if I know what those reasons are, though) and this child may be an extra challenge, but she may well give us extra joy of which we cannot possibly imagine at this time. In fact, I know she will, I know in my heart (and in my mind) that the intangibles and the degree to which she will make myself, my wife, and everyone (hopefully) and anyone she (my daughter) comes in contact with, better people, for the sheer understanding she will give them that quote unquote the norm and theoretical commonalities are not necessarily that which should be cherished any more than that which is different, and that underestimating those that you assume to be lesser in some way are almost always surprisingly superior in ways and means of what were thought by the obliviously ignorant to be inconsequential, and these facets and talents, when properly tapped and nurtured and given shine to be understood in the frameworks away from the money fame television society and given due justice in the courts of the heart prove to be of a worth all more important and vital to the health and sanctity of society as a whole than what could ever have been conceived, theoretically or not. Ummm, whatever that means. In simple terms, er, or, more groundedly, I believe she’ll have a unique effervescence and abundant talents all her own requiring no quantification or stamps of approval from the society as a whole, and if it comes, great, if it doesn’t, she’ll go on her merry way and live a life full of popcorn and daffodils. Ok, I’m in left field. Apologies and thx for listening. Have a good weekend, week, year, & life. Aloha.

i don't need no steenkin title

2006-01-31T13:38:00.000-08:00

howdy there. well, yup, still here, didn't go anywhere, well, actually, i did, we did, we went on vacation, a short one, a close one, just a lil getaway, we shot out to kauai for a long weekend, was very nice, gracias, although the wife got sick, and we were freaking out cuz she was running a fever when we got back, went to the emergency room, everything was ok, she's just 'bout round the bend i think, fever broke, still nursing a cold, baby's fine, wife's fine, thx for asking, even though you didn't ask.

well, look at me, second paragraph and i haven't even mentioned down syndrome yet. voila. it feels more normal and not something to trip about every day and the baby's not even born yet. not to say we're through the woods, these woods is deep, there's lions tigers a bear and plenty of "oh my's" lurking methinks, and we still get moments of apprehension, fear, etc., but we're dealing, we is strong, methinks? oh well, strong enuff...

one thing we're still working on is when/how to tell our families. we found out about the DS right after finding out she's a girl, so we haven't told anyone either bit of info. i think we're gonna let everyone know that she's a girl first, and then lay the info in ref: the DS at a later date. i just don't want people to judge her, my little girl, without first setting an image in their mind, of their granddaughter, their niece, their cousin, etc., get some emotional attachment, then maybe they'll be better equipped to digest the news that this child coming into all our lives will be quote unquote "special."

yadda yadda yadda. anyway, just wanted to let that one person that doesn't exist that's reading this that things are good, and we're hanging in there. actually, i just wanted to type a bunch of stuff and see it on the screen and empty out my head for the nonce. i think that's it for now. it's interesting, this feeling, of being able to type whatever i want, of letting loose, worries, fears, exacerbations (huh?) but i do, yes, think that's it for now, i know, i thought i had more knowledge as well. be safe, kids.

yup it's me again

2006-01-18T16:31:00.000-08:00

Howdy yo howdy. Well, I found some links, or, actually, cut & pasted them, so you can click on some stuff, you being me & me being moi. Sigh etc. well, yup, we’re still scared, still anxious, but still happy. I try to keep positive, to think about the Holland italy analogy, look at all the cute pictures that parents on the net have of their kids, know that what I am embarking on, although not the “standard” of raising Arizona, or Oregon, or Hawaii, is what it is going to be for me & mine, and that is a beautiful thing, showing a little child her way in the world, trying to set up and establish the best setting for her to live her life, keep an eye on her, give her the best of everything, be there to pick her up when she falls, encourage her when she struggles, love her & hug her when she’s sad and cheer for her when she succeeds, I know I will do all these things and more and that she will teach me things of which at this point I cannot even imagine. She has taught me so much already. She has already made me a better person, a more complete, caring, and consciousness expanded person, shown me what’s really important in this life, and she hasn’t even been born yet. She is already so amazing. Sigh and le jardin and plus a side of raspberry ice cream. Take it easy johannessburg and associated villas and burgs, you in the north and you on the fringe, as well as normal frank and Estelle, much love to you all. Drop me a line in the comments if you’ve anything to say, if you exist. Gracias.

a little more clearheaded this time...

2006-01-17T12:04:00.000-08:00

It’s hard. There are moments of exquisite happiness, as I rub my wife’s belly & think about the beautiful child within, and then there are moments of sadness, in which I think, this child, as amazing as she will be, will not be quote unquote normal, her life will be different, and then I shake my head and remember that there is nothing wrong with different, different is not wrong, different is not bad, different is just different. And there are incredible amounts of things that can be done for and with children with down syndrome from the time they are born nowadays, including nutritional intervention, mental & physical exercises, and massive amounts of attention and caring, to the point where they can be completely mainlined in with regular classrooms, reading at 3 years old, top of their classes, running around playing, being a normal kid, all that jazz.

But then the doubt creeps in. and the health concerns, despite their supposed reduction via nutritional intervention, the 50% of children with down that have heart problems, the rate at which they have stomach problems, sleep apnea, early onset alzheimers, all the horror stories, all the worry, all the concern, for this little innocent child that asked nothing more to be born and to be a kid and have fun, and what if she has to lay in the hospital after debilitating operations, and she’s in pain? These are the thoughts that grabbed us after first hearing the news, the fear of our child in pain and suffering, which had us leaning toward the idea that termination of the pregnancy was the best, although incredibly painful & frightening, option.

But these statistics about health problems and lack of education on the possibilities and actual lives of people with down syndrome, like certain scare tactic stories in politics and other arenas of the world, are only the bad side, and the real truth (apparently) is that children with down syndrome, even if they have health problems out the gate, can get surgery that has been very refined and perfected to make adjustments for these problems, be they with the heart, the stomach, or what have you, and go on to lead perfectly happy & healthy & productive lives.

And the process of which they rip that child out of a woman’s womb if you do decide to end it. Tearing your child into pieces and pulling her out as my wife sleeps, awakened feeling empty and sad and empty and afraid. Or else they put a long needle into her & kill the child and then prompt labor, which could go on who knows how long and you give birth to a dead child. We just couldn’t do it. We wouldn’t do it. We will have our child and love our child and make the best of our lives and likely have a great deal of rough times and challenges and I think a greater deal of happiness and love and the fond reflection of looking back on the decision we made with a great amount of comfort and gratitude that we didn’t sacrifice what may have been our souls on the line for what appeared to be the better short term option for maximizing our current comfort zones and quote unquote normal lives.

This is not to say that I disrespect anyone that made the other decision. I don’t. everyone is different. That is the road most traveled. And it is the right decision for many. We would not be bringing this child into the world if we didn’t want to love & take care of her & felt very confident in our abilities to do so.

Sigh, I’m done for now. I could go on all day. More later, more nonstop chatter as well as some links hopefully, I’ve got a million of each, in whatever denomination sounds appropriate. Capiche & etcetera…

i was caught short but let me clear my throat...

2006-01-15T04:45:00.000-08:00

Hi. Comfortable? Ok. Now let me lay one on ya. My unborn child has down syndrome. My unborn daughter. She is a little over four months pregnant inside my wife’s belly. And I love her very much. And we were given the choice of whether to keep her or to ”terminate” her, and we chose to keep her, to let her be born, but, yes, we vacillated, and for most of a weekend, the choice seemed to be that we were going to get rid of her, to put her off into the cosmic field, to take the road most traveled (80-90%, by some estimates) but at the moment of critical critcicalness, we chose the road less traveled, the only road for us, the road that could make us feel like human beings, the ones in which we could look ourselves in the mirror in the morning. If our daughter is willing to push so hard to survive against all the odds than what would we be to deny her her existence, ne’sct pas? You know what I mean, or you don’t, either way it doesn’t really matter.

Obviously, or maybe not so, it has been the roughest week of my (our) lives, one that has been full of mountains and valleys, the highest & the deepest, and everything else that intrudes in the existence per se, is colored, nay, dominated, by this presence, this omniversity, of this ideal, this entity, this dillio, that is permeating all thoughts & mindprocesses.

I love this baby. I love my daughter. That doesn’t mean I do not fear for her. That doesn’t mean I don’t sit up at night & by day wondering how the world will react to her, wondering how her reaction will be to us bringing her into the world. But that is something I have to live with & hope against all hopes, hope for all hopes, for the sanctity of life, that it is a positive force, that it is something of which there will never be any dispute hereafter of the goodnaturedness of my (our) decision. Thus it was & thus it shall be.

There are lots of studies & lots of articles & lots of research of which what says that children with down syndrome can achieve just as much if not more than quote unquote “normal” kids, and these are things that I will lay on you at a later date, of that I can be sure, but at this juncture, just know, that whatever happens, this is the decision of which was made, and I never second guessed myself, except in the back of my mind, like all big decisions, but like my wife & I said today, what if this child was made for bigger things, and what if she was not, whatevers, she was preordained to be born unto us so that she could come into this world, and if she was born unto those of different mindsets, not that those mindsets were of any type of inferior structure, and not that they weren’t, she would not be here in the future, and she will be, notwithstanding the 30% odds, as the doctors speak, that she might not make it until the moment of childbirth, and you know what, in all honesty, I hope that she does make it, because I look forward to meeting my beautiful daughter, and knowing her, and learning from her, because, and this is not the only reason because, add in all the other potential reasons that of which of course one could learn & benefit from a daughter in this world & be inspired and made the antithesis of ignorance of the world, but, well the world the way it is & so forth and information getting lost in the nether notwithstanding, congrats &hallelujah for getting this far. More later & mahalo & aloha.