dealing with depression, part 2

I'm depressed again.

I think it started yesterday after I read the post about retards in another mommy blog. She was talking about this lady that she least expected to say 'retarded'... and did. And how she dealt with it.

I have thought about the retard thing quite a bit during these past few months. And before, too, actually. It's like the word 'missionary' in a sense. One of those words that started out meaning something quite different from what it's come to mean. I'm not steady on my standing on it all.

But I do know - as I commented on her blog - that I would be inclined to whip the crap out of anyone that called my kid a retard (I think I said it nicer on her blog though).

Over the period of last night - and also feeling sick with another cold - I had memory after memory after memory of fights.

When I first started school, my head was shaved and covered with blood red scars. This was because the year before, that same head had gone through the windshield of a car (seatbelts were still accessories in 1978). I was teased ferociously - in the beginning, I remember standing there, bewildered. Completely not comprehending what was going on. It was when I did that my fighting started.

Then the 7 year old scar-faced scrapper moved to Fiji. And a new type of fighting began - when I'd get followed around and kids would throw stones at me for being white, I'd turn around and dive head-first into the group and beat the shit out of them. The kids were always but always considerably larger than me. It's like my mind goes blank - shuts off - and I don't see or hear anything. I just fight.

That's how my front tooth got chipped - a boy that I was fighting had a ring on and hit me in the mouth.

I don't physically fight anymore (unless I see someone picking on someone else) - but I still have the blank-mind thing when I encounter something outrageous in my line of work, which involves a lot of disability advocacy. I'm older now and aware that it can be more effective to be strategic in how and when to address things that are not right, but there is still the occasional time when I blow up. You know: like when voc rehab counselors start playing God or employers say they are not baby sitters (or even, 'there must be some mistake - we don't hire those people').

This is my history and this is my present. I lay awake for hours last night thinking of the future. With a precious baby girl that might be called retarded. How am I going to deal with this? How??

I'm so deeply tired of fighting. And it would seem that all my past stuff might just be a warm up for what is coming.

I feel like running back to Bolivia and hiding under a beautifully-patterned blanket and waiting for the night stars to come out and just be.

Be.

new things

Well. The Perfect Pregnancy Workout Video Pt 2 was a bit of a let down. It went so damn fast! I played the beginning like, 3 times thinking that I missed something because there was no introduction, nothing. She just jumped right into a vigorous yoga pose. And she's all about vigorous yoga poses. It's only 35 minutes long total, but it's like a race from pose to pose.

While I'm not loving it, I'm not hating it, so maybe I'll just try it again and see which way the ball is going to swing.

Moving on, we got the Baby Einstein Wordsmith from Netflix and Micah is slurping it up and asking for seconds. It's pretty funny. He's not much of a tv kid - even if we have it on, he doesn't pay it much attention. But as I type, he's sitting in front of this one, rapt. Squeaking from time to time when he sees the kitty puppet. It's really good - goes slow, lots of repetition.

I'm thinking we all need to up the ante if Moxie's got Ds - we should be proficient at signing, since it seems that kids with Ds learn sign faster (well, that's true for any kid, I think). So I'm starting now. If she doesn't have it, no harm done. Sign will also be useful for me and my family to communicate if and when I go totally deaf. *smile* And you know I'm not joking!

We ALSO got a new book for Micah - Hand, Hand, Fingers, Thumb. It's GRRREAT! Full of monkeys and drumming action! And it's so awesome to have something fresh to read. While this kid has a whole load of books, he only reads one or two at a time. Over and over and over and over and over and over and over and over and over and........ over. Sometimes I am proud of how I seem to be able to make "Goodnight Gorilla" seem fresh after the hundredth read - of that day alone. Good Mommy. Good!

carrots and crunches

I'm reading Skinny Bitch: Bun in the Oven. Like the original Skinny Bitch, it seems like they have some anger issues - they can't stop cussing (when it doesn't seem necessary - it's like they are putting in cuss words just cuz. It's a "tough love" book). And in order to get to what I like (the meal plans) I had to wade through:

- the inconsistencies and hypocrisies including that you shouldn't eat meat because it is rotting flesh and vegetables are living when you eat them (last I checked, those carrots in the fridge were pretty dead)
- all the advocating they do for veggie/vegan processed foods that taste like meat - but wait! we're not supposed to like or eat meat anymore!
- the educational pieces on how bad the meat industry and government are, the evils of chemicals and all that...

Getting over that, there's the meal plans and I like those for mainly inspirational purposes. They stimulate me in doing a better job of combining grains and nutrients and stuff like that. At least I like to think they are.

I've also re-opened my beloved Well Rounded Pregnancy Cookbook. I love this one. I bought this before I even bought any pregnancy/baby books! (I got so freaked out by "What to Expect when you are Expecting" that I ran out of the store). I think this cookbook ought to be a standard that they give out in doctor's offices or something, when you first find out you are pregnant. It's full of great recipes that you can tailor to how you feel (sick/hungry/full). And they taste good! Really, really good.

One more note on this here subject: I also got The Perfect Pregnancy Workout Pt. 2! I was so excited when I saw it. This was made by the twin sister of the Cirque du Soleil acrobat that made the Perfect Pregnancy Workout 1. The first one focuses on pilates-types exercises and the second on yoga. It looks like a pretty bad-ass yoga workout... from the pictures. Have yet to try it (it just came in the mail today).

Ooooh, I'm so excited! I'm going to try it out now.

christmastime

We went to see Mikey's Vietnamese family yesterday for Christmas (Mikey's half Vietnamese, half Ukrainian... which is probably why he just looks Native American). It was great in so many ways - they have this incredibly high energy and just wrap up Micah in their effusive blanket of love. And they cook like there's no tomorrow - their duck and pork and lettuce-wrapped rolls! Mmm, mmm.

They adore Micah. They get down on their knees - all of them - and play with him and cuddle with him and kiss him and just love him. He's a pride for his Great-Grandma on that side.

But you know. There is a lot of prejudice still with not being full Vietnamese. Mikey went through some of that - actually, a lot of that. And after living in Asia for 10 years, I know there is even more prejudice towards disability there then there is here. Aborting a disabled fetus would just be good sense, no big tug-of-emotional-war over it. That is, if you know about the disability. If you don't, then you just deal with it as best you can.

I felt a wave of sadness when I was watching his family play with Micah yesterday. They love Micah despite the fact that he's not full Vietnamese, and a big part of that is that Micah is so very easy to love - he's beautiful, smart, funny - all of these things that we'd like to see ourselves being. I wonder what it'll be like if Moxie's not all those things. And not just with his family - with mine too.

I talked about it with Mikey after we left and he said he'd been thinking the same thing when we were there, and it does. Make him sad too, that is. He said that it'll be all okay because we'll provide our little Rainbow Tiger Moxie-girl all the love she'll need if she's got Ds.

I hope we'll be able to. And I hope that we'll be able to help his family love and accept her and claim her as their own, just as they do with Micah.

@ 22

Yesterday I saw my belly move from the force of Moxie's kicks - twice! After the first time, I called Mikey over and when it happened again (and he saw it), it was so big, the thought I was faking it. Ha!

This little girl in here can move. I don't know if it's just my skin being thinner since I've already had a kid and been stretched out, or that she's going to be even more active than Micah was in utero - or a combination. Because this time - 22 weeks - with Micah, my belly was definitely not bouncing from the force of his kicking. Nope. That came later.

Thinking of that 'later' makes me think again of how BIG I got with Micah... and I just don't want to be that big again. Or maybe it's just the weak part. I think it is. I don't want to be that weak again. I need to up the ante on my non-video exercise components: walking, bike riding, maybe swimming (if I can find a warm pool).

sparkle me up

After I wrote yesterday, I spent some serious time on the blogs written by Moms of girl babies with Ds. I felt so much better.

Those little girls are darling, Ds or not. They don't have dull eyes, they look sparkly and fun. I can deal with that!

And those Moms... wowza. I was reading one blog that I liked in particular, Living for the Love - and really liked all that she's got to say.. and my eyes were rounding over her post on the IEP. That's just crazy, having to deal with a school system that is telling her what her kid should do.

From that angle, I guess I am in a better place than a lot of other people when dealing with government bureaucracy. I take those same IEP's (Individual Educational Plans) and help put them into an IPE (Individual Plan of Employment). I don't make the whole plan of course, DOR (Department of Rehabilitation) does that; I just help them with the career assessment portion of it. My job is to implement the IPE's - to the very end. Until the participant is doing what their IPE says they will do. Be a teacher. A doctor. A lawyer. A biochemical engineer. A social worker. Whatever.

It's a mind-bender for me to think that these little kids - 3 years old! - have IEP's! I mean, that's nuts! If a child didn't have a disability, no parent would be expected to develop an IEP - and it's probably a good thing, because most parents don't have their shit together to know what to put for it. And I'm not of a mind that any parent should. Beyond basic goals like growing and exploring and developing their skill sets and stuff, that is. Putting really clear and strong parameters on what you want your kid to do and become seems pretty controlling to me.

I thought that Mom in her blog handled it with a lot of grace and has excellent sense. I hope I'd be able to do the same if put in the same situation.

apples and oranges

I went to the market today and had to hold back on crying... there were so many beautiful little girls running around. Just beautiful. Doing things little girls do. Being little girls.

None of them had Ds. I guess I'd be surprised if I did see a child at this point who has it; there don't seem to be any.

And it just overwhelmed me, again - how on earth am I going to deal with this if Moxie has Ds? How? How am I going to deal with her sitting in the shopping cart and looking at me with a face full of Ds characteristics (which I do not find attractive) and looking at me with dull eyes - and then just beyond her would be normal little girls just being girls. How????

I wonder yet again why this is so hard for me. I've done an endless amount of thinking and I don't think it's because of any chance of Ds being a reflection of me. I don't think this mostly because I see children - and my own child, Micah - as being their own people. They are not extensions of their parents. I mean, genetically, they are. But they are their own selves. When Micah is being gorgeous and funny and smart and kind, I don't take credit for it, any more than I do when he throws a shit-fit and starts screaming in the street. He is who is he is. My job is to parent him as best I can.

I do think there's a big chunk of just grieving for a child that may never be. If she has it. I mean, she's not ever going to be who she wouldn't have been if she didn't have that extra chromosome. If she has it, that is. But then that begs the question of comparing apples and oranges, right? I shouldn't be upset about that because we all need to just enjoy an apple and understand that it's not an orange and never will be an orange but that's entirely okay because an apple is good too. So I shouldn't be upset if she has it, shouldn't grieve for the "whole" and normal child she would have been without the extra piece.

Shouldn't, wouldn't, couldn't, shouldn't. I don't know.

weighting strong

I gained 90 lbs being pregnant with Micah. Count 'em. NINE-TY. 9-0. That's a whole lotta poundage. While I did lose a lot of them, I still had 20 to go when I got pregnant with Ziggy and everything (= my weight loss) came to a grinding halt. Then I lost Ziggy. Then I got pregnant with Rainbow.

I started this one heavier than I wanted to be from the get-go, so I've been trying to exercise and "eat right". Exercising is relatively easy to push myself to - first of all, I like it. And second, all I have to think of is the horrific recovery I had from Micah's c-section (which, I believe is partly to do with the fact that I was so out of shape) and I get completely freaked out and run for the videos.

Yes! I am using 2 really awesome workout videos that I talked about in Finding Ruby's Father,
The Perfect Pregnancy Workout and 10 Minute Solution: Prenatal Pilates. They really hit the nail - the former is just.. perfect. And it takes about 45 minutes, again, a perfect amount of time. Gets everything going and going strong. The latter is what I turn to when I don't have 45 minutes, or if I just want to shake it up. It's great because you can pick and choose which workout sessions you want, create your own session. Plus, she moves quickly, does those count downs ("3 more..") so the end is in sight when it seems like too freakin' much.

While I'm getting pretty big, I have only gained 10 lbs so far. That's like, incredible for me. By this time with Micah, I'd gained what I think I was supposed to have gained for the WHOLE PREGNANCY... Hopefully my strength and flexibility will increase so that I'll really be able to have the birth experience - and recovery - that I'd like.

I have my heart set on a vbac... I want the doula, the music, staying in my own bathtub for as long as possible, the whole crunchie, crystal-kissing shebang. Oh yeah! I want to be able to squat down and push out my little girl - knives and bright lights and Kaiser be damned.

PS - that picture? not my belly - thought I'd spare you that white-veiny-less-than-perfect-piece-of-pregnant-me... but this one is pretty nice, huh?

a dosie do

Drat. I only have a little left of Expecting Adam... I want this one to go on forever! It's so good! I have to control how much I read of it, because I'd already be done with it if I just let loose and read as much I wanted to. Like a junkie let loose in a room full of crack. But no. I try and take it slow. Dose it out in small (ish) portions.

And try and distract myself from reading more by blogging or doing my exercise video - hey! I might even paint! (Yes, Micah's napping - I have another hour and a half to call my very own).

Expecting Adam is over there on the table. I'll just try and pretend it's not calling to me.

I can't heeeeeeeeeeeaaaaaaaaaaaar you!

moxie, the rainbow tiger

I'm pretty sure we're going to name this little growing baby, Moxie.

Yes, Moxie!

I've gotten blank stares and 'uhhh.... okaaaay''s from the few I've told, but really, that's fine. This baby needs to have a name that:

• expresses the fighter that we already know her to be (besides her already beating the 0% odds laid out for her hydrops, she's going to be a Tiger, and slated to be a Taurus as well)
• has ooomph-ah in her name
• should start with 'm', just cuz. We all start with 'm' and I don't want to leave her out
• needs to be easy to pronounce, won't get mucked up in French, Japanese, Chinese or Vietnamese

Moxie means:

1.	vigor; verve; pep.

2.	courage and aggressiveness; nerve.

3.	skill; know-how.

I'm not crazy about the aggressiveness bit; so I'm ignoring it for the courage piece :)
So unless we come up with something better, Moxie she'll be.

As much of a tiger-fighter she is, she's got that big splash of rainbow to her too... she cracks me UP with her cheeseball-ness. I swear, she's hooked on cheesy music. I'll have something playing of the non-cheese variety and she's quiet as can be. "You Light Up My Life" (or what is playing right now, "Unforgettable") comes on and she's all karate-kick-master.

THWACK!

She lively ups herself in a big way. Roar, my little tiger! To the soft crooning of Johnny Mathis!

deja'vu'ing

I am mostly driving to work again these days. Not good, but I do appreciate that it gets me places fast. Er. Faster.

I have a playlist that I tap into that usually puts me in a better mood, helps me channel my spiritual side, keeps me more connected to God and less inclined to froth at the mouth when someone stays a split second too long after a light has changed.

This morning I was listening to one of my old favorites, it's called "Dastam Bagir Abdu'l-Baha". It's a Baha'i song, and it always moves me. So, there I was, driving away and crying a little bit, listening and all the sudden, it reminded me of late April through June of this year. When my department was basically giving me and my program away like so much unwanted trash. A fully-funded, well-managed, goal-exceeding program. It deeply hurt and it took me my miscarriage to really get over - I remain convinced that the stress and deep hurt that I was going through at that period is what made my baby die. It was such deep hurt. I couldn't control it and I couldn't cocoon her from it.

I listened to "Dastam Bagir" a lot during that time to help me get through it all, and the thing is, I had no idea how wonderful a gift it all really was. My being passed on ultimately meant that I finally have my dream boss. I am free to do all that I'd like to do in a job. I am truly happy.

And did I ever suffer through the passing of it! The anguish! Oh my.

So it struck me funny: I wonder if this is going to look like that? That perhaps God gives us the best presents in the most difficult-to-unwrap packages?

Here's a video "Dastam Begir" (accompanied by a slideshow of Abdul'-Baha and his life):

one belly laugh

I'm like, addicted to reading stuff about Ds now. It's bad n' sad. I mean that because I really do think that I should do what Helena said and just focus on all this stuff later and just be pregnant right now. She's right. I know she is. Pregnancy alone (with an 19 month old and a full time job and shlepping clothes to the laundromat every weekend) is plenty to keep me busy and occupied, I really don't need to add to it with this new obsession, especially if the obsession brings me down.

But I just can't! I can't stop!

This new book that I'm reading, "Expecting Adam" is great. First rate, great. It's the kind of book that I'd recommend to others and would dig reading even if it had nothing to do with me. She's hella funny, a super writer. And! I found out she's got a blog!

She makes me laugh out loud - been a long time since a book made me do that. And it feels so good.

another big sigh

I finished Choosing Naia last night.

It ended up depressing me more than helping. Probably because it wrapped up with this interview with Ashley Wolfe, and she's talking about how lonely she is. She's too high-functional for her peers with Ds to keep up with, yet too low for her non-disabled peers. And so it goes.

If Rainbow's got Ds, she could be as highly functioning as Ashley. And just as lonely. Or not. She could be the minority, the 10% that have severe retardation and problems.

Again - as always - I wonder what I'm getting into. We don't have a lot of money. We don't have a lot of family around to help. Sigh.

I'm pretty depressed.

choices

I finished Down's Syndrome,The First 18 Months. I was crying through a big chunk of the latter parts and ended up being waaaaaaaay more scared than I was when I started. I guess it's because it was emphasizing all of the work that goes into have a child with Ds. All the physical therapy, the basic skills development. It seems so overwhelming.

And it seems like the parents featured were so.... accepting. Loving-like. Deeply compassionate, patient, saintly-types. They seemed to be a-okay with Ds before they even found out their child had it. There was a little talk from one or two about a grief process, but not much. I mean, it doesn't seem like they went through the wringer like I am. And they didn't seem to struggle with prejudice/pity against those with retardation like I do. No blips on their radiant hearts.

Later on I was reading more from Choosing Naia. That was another one. It's like, when they were debating keeping her or not, they seemed most upset about her heart defect. Not so much with the Ds/mental retardation piece. I care most about the mental retardation piece. I guess because it's just not fix-able.

In one of their conversations with a family with a kid with Ds in the book (when they were trying to determine whether or not to keep Naia), the father was talking about how he had a friend whose kid had a progressive disability and wouldn't likely live past 25. The two fathers would talk, and once talked about who 'had it worse': the one who had sparkling conversations and interactions with his son who was slated to die young, or the one who had a daughter that would live to be who-knows-how-old yet with whom he'd never be able to have a 'real' conversation.

Quite the question, isn't it.

alert reading and other stories

In a quest for more information, we rented Down's Syndrome: The First 18 Months off of netflix. I was totally falling asleep by the breastfeeding section... it's just so borrrrinnnnnnnnnggggggggg. Yawn. The pictures of the kids are the only thing that I think is really going for it. We'll try and finish it for the sake of some education, but.... I'm not especially psyched.

On the other hand, "Choosing Naia" came in yesterday, courtesy of Amazon. I had a hard time putting it down. That book is GOOD. And nuts how similar it is to our own situation in many ways. It's so good that I had a hard time coming to work today because all I wanted to do was finish reading it. 3 more hours.

I have a caffeine headache. I'm quitting caffeine. "So soon?" you might ask, but um, yes. I got to thinking about how we are not doing any more testing or ultrasounds and I'm still drinking caffeine? I mean, really. Granted, I'm not slugging it back or double fisting RockStars like I used to, but I'm drinking one or two coffees/teas a day. Baaaaaaaad. Shame on me.

I'm weaning myself - one cup of tea a day. Ouch. It's rough.

nailing a rainbow

I love Mikey so frickin' much.

He does dumb stuff like forget to pay the gas bill on time (which got us cut off twice!) and will leave laundry sitting around for what, forever. We could chore war ourselves to the grave and we probably will.

But. When the shit hits the fan... there isn't anyone better than Mikey.

He's got a way deeper sense of true compassion, honor and love than anyone I've ever known. It blows me away. Humbles me. Makes me deeply grateful that I'm with him. Makes me want to say cheesy things like, he makes me want to be a better person. Wow, that's some deep cheese there. True brie.

One little example:

I was telling him that if Rainbow does have Ds, I'm likely to struggle with the desire to have another baby, to "get it right" so that Micah would have a sibling he'd be able to relate to on an intellectual level. Mikey was like, "what do you mean? We GOT it right with Rainbow. However she is is exactly right - and who's to say Micah won't be able to relate to her if she's got Ds?"

I think he's nailed it. And I think I have a lot to learn.

to ultrasound or not...

Mikey and I talked for hours, HOURS about our big question: to ultrasound or not.

On one hand, we both want to see Rainbow again. She's so cute! It's so much fun to see her moving around and doing her thing! But then, we've already been through the wringer because of our loving to look at her.

If we go in tomorrow morning for our big in-depth 20-week ultrasound and we find something else to worry about, what's it going to help? I mean, really. We won't do anything invasive in-utero, so if she did have something wrong and if there was something we could do about it now... we wouldn't. And things change - why worry and stress out if we find something, when she's still growing?

So then we got to the flip side: what if everything is just amazing and good and it'll make us much happier? Well, then it goes to research. I googled "dangers of ultrasounds" and immediately waaaaay too much popped up. And it links to possible brain damage.

Our baby doesn't need anything more in the way of hindrances to her brain development. Even if it's just a chance. Why take it? We've already put her through enough.

We'll hold off on the ultrasounds AND the EKG till later, closer to birth. We DO want to to do the EKG in particular (that's where they specifically check out her heart), because if there are issues, we'd want to give birth at UCSF or a place that's set up for heart-care. But what's the point of doing it now? Like I said, she's still growing - if we saw a hole again now, or something else that was off, we couldn't do anything anyway and there is still a chance it could heal.

I told my boss today about Rainbow's amnio results... and he was just great. I *heart* him. He's got a kid with a disability, and just about made me cry when he was talking about how challenging/wonderful it is (okay, he DID make me cry, but I was able to hide it). Plus, he's hired only about a hundred people with Down's and advocated for job and equal access in his 40+ years on the President's Council in DC, so he knows a ton about what's possible. I felt so happy, so supported.

What an amazing guy.

Plus! He said that after maternity leave, I can come back half time if I want, no problem. Isn't that wonderful?!!

statistically speaking...

At this point, I'm just plain curious about the statistics of an amniotic false positive. 98-99% accurate is not 100%, and yet when I was googling around like a madwoman trying to find examples of a false positive, I couldn't. Well, not for Down's anyway. I found an example from a scientific journal of a false positive for Turner's (the article was about how the mother aborted based on the amnio results and then upon analysis, the fetus didn't have Turner's after all - and the doctors were wondering why it came up positive...).

After hours of research with the diffuse hydrops, we DID find one example of a case in which the hydrops resolved. Only one, to be true, but I should be able to fine ONE case of a false positive with an amnio if it's not 100% accurate. Right?

So now, here's what I think:

Nearly all the mothers of my Ds groups are really young. And that's because us ladies over 35 are offered the full spectrum of genetic tests (and usually take them) while the younger ones are not. So there are more babies with Ds born to younger mothers than to older ones. The older ones, while more likely to have a baby with Ds, usually abort when they have a positive amnio. The abortion rate is 85-90%.

So there aren't really all that many cases of babies being born of mothers who have an amnio and still choose to keep the baby, and not many tallies of how many might be a false positive.

That's what I think.

Like I said, this is just about my own curiosity at this point and nothing really to do with Rainbow. I'm prepared for her amnio to be correct. I'm not operating on any kind of assumption that she won't have Ds.

But I AM curious about these statistics.

the value of statistics

It's funny how doctors want me to focus on some statistics and not others.

An amniocentesis has a 1-2% chance of being wrong. Of having a 'false positive'. And a VBAC (vaginal birth after casesarean) has a 1% chance of uterine rupture.

The perinatologist that we saw yesterday, Lawrence Newman (pictured), talked a lot about the 1% uterine rupture statistic and that many people opt for another c-section because of it... and then when we wanted to talk about the 1-2% chance of false positive, he poo-poo'ed us with, 'your child has down's syndrome. you need to face it'. I mean, he wouldn't entartain the idea of a false positive at all!

It was kind of funny. Mikey said that the reason we were even asking is because we were told that she had NO chance of surviving past 13 weeks with her diffuse hydrops. 0%. And then 2 weeks later, it was completely resolved. Fancy that! He was basically then telling us that our Rainbow has already performed one miracle, what more do we want? Huh?

Fucker. Except I kind of liked him. He had a truly thick New York accent and a nice sitcom-Grandpa manner about him. Okay, Newton, you are an idiot but I forgive you.

The other thing he was doing was emphasizing the lifetime of care that we'd face with a child with Ds. You know, such a burden. That when we're "gone it'll be on the family/siblings to care for her and that while a few people with Ds can have functional lives, most of the time you are looking at a lifetime of constant care". A death sentence! Say gooooooooood-bye to your normal life, oh Mama, cause you are looking at spoon-feeding till you croack!

I was kind of getting freaked out when he was talking until I remembered stuff I'd read in mom-blogs of moms of kids with Ds. Here's one bit from the Upside of Down. I think when I've got more time, I'm going to write my massive missive to Kaiser about how they ought to re-phrase stuff. Know their shit a bit better. Quit pushing termination because you know what? If I had listened to them from the get-go, this baby would be already be gone.

And right now, this moment: I'm glad she's not. I'm glad that I can feel her kicking away in me as I type.

I've always been terrified of developmental disabilities, mostly, I think, because the brain is the main part that is affected. Dealing as I do every day with pretty much every*single*other type of disability - you name it: from spina bifida to chronic pain and depression, from dwarfism to the blind and deaf - I am fine with disability. It doesn't mean much. Our limbs and senses, they are just parts. Not a big deal in the end so long as our brain works.

With developmental disabilities, it's not a matter of getting the right software, equipment. It's a matter of orienting the world differently to YOU, for YOU, and a world that is often not very understanding at that.

I went through the windshield of a car when I was 4 years old. It ripped my face open and gave me a nice Auditory Processing Disorder along with my Traumatic Brain Injury. In "now-speak", this means that I'm "little 'd' " deaf. I'm not Deaf. Not part of Deaf culture, I don't sign well. I'm little 'd'; I can't hear much without my hearing aids, but there ARE sounds that I hear perfectly without. It's weird. It's crunched. It's confusing.

I'm also a few degrees away from being legally blind. That's just a family gene, nothing from the car accident.

My point here is that for me, I went from being cute kid to being covered with blood red scars and a shaved head. Then to coke-bottle glasses. Then to big fat medical hearing aids. To top it all off, I'm white and was raised in a black country. I was sick, terribly sick and tired of being the different one, the messed up one, the one with nothing going right with her.

And now, they say I'm going to have a baby girl who will be developmentally disabled. This is a two-fold blow from the disability angle:

1. For me: I DID THIS ALREADY - I checked that box off. I learned those lessons! I've been through that hell and back. I can write my own Chicken Soup book, and maybe if I was smart I would and at least make some money. I know I won't though. I have too much pride and I hate that 'special' pity party.

2. For my precious baby girl. Dammit! Is she going to have to go through what I did? Is she going to know what's going on? Will she know and care and hurt because of it?

I wonder if I'm doing her any favours in keeping her. Would she better off if I killed her? I honestly wonder. Am I giving my child a life sentence in hurt by continuing to nourish her body in mine?

But then. I love God. I adore God with every single fiber of my being. God knows me, God created me. I know, I trust that God would never give me anything that wasn't good for me. God is merciful, compassionate.

This here seems like the single biggest test of my life, to step back from what is one of my greatest fears and put my faith and trust in God.

I can't stop crying.

Welcome Home

This is quite a find...

Welcome Home

When my baby was born with Down syndrome, I received a writing called, “Welcome to Holland,” by Emily Perl Kingsley, from my local support group. I am grateful for the inspiration which has been felt by many who read it and love that was put into creating it; however I would like to relate my experience differently than hers, with another analogy of the feelings involved when having a child with a disability.

For years, you save for your dream home and finally find the perfect house. The location is great. It has four bathrooms, real hardwood floors, and the biggest picture windows you have ever seen. Everyone you know is happy for you about your new house. You can’t wait to move in.

On the day you are scheduled to close, you receive a call from your lawyer explaining that the homeowners changed their minds and have decided not to sell.

You are shocked and sad. You have planned, waited, and prepared for this house, but now it is gone. You picked out new paint colors and decorated it in your mind at least a million times. You wonder, “How could this happen to me?” You think you will never find your perfect house again.

You decide to bid on an older house you walked through once before. There was something about that house that was comforting and the need for a home of your own is still strong. Your bid is accepted. You move in within weeks.

When you tell everyone about the loss of your “perfect” house and plans for moving into the other one, you receive many condolences. Everyone is sad for you, and all of your friends and family wish they could “fix it.” Nobody thinks it is fair.

You go to the new older house, immediately after you close. You wonder why you didn’t realize that it was so close to your favorite store. As you walk in the front door, you see a beautiful window full of stained-glass artwork which was hidden by a curtain before. As you continue to walk through, you notice the stained and dirty carpet, decide to look at what is underneath, and are amazed by the hardwood floors that are even more elegant than those in the other house. There are only two small bathrooms, but they have awesome claw-foot, porcelain tubs that are very deep and you can’t wait to soak in them.

You begin to realize what made you like this house initially. There is sweet character here. It is unique. There are rooms attached to rooms, and many hidden spaces that you never expected to see. This house will need work, and there are things about it that aren’t quite “perfect,” but you kind of like the imperfections; they add to the personality of the house. You immediately develop pride and love for this house because it is yours, imperfections, beauty, character, and all.

You can’t wait to tell those you care for how much you love your new house. You want to show it off to everyone and let them know how very excited you are. You don’t want to feel sadness anymore; you love this house and wouldn’t have it any other way. The other house would have been nice too, but the one you were given will bring you just as much joy, so there is no need for condolences. This house is where you belong, you know it, accept it, and love it. You will be happy here, and look forward to the experiences you will have within its walls.

secrets

I'm a die-hard blogster. I started off with Finding Ruby's Father and moved on to Doozeedad when google told me I was out of photo space. Well, not just because I was out of photo space, really - it was just time for a new blog.

I'm not really ready for a new blog beyond Doozeedad, but I am not able to write about my baby yet on that forum. Too many people read it. But yet. I need to write. So! Juicy Fruit is born.

The doctors diagnosed my baby, "Rainbow" (due April 28th, 2010) as having diffuse hydrops, a hole in heart, and a nil survival chance. 2 weeks later, the hydrops was gone, as was the hole. We had an amniocentesis done at that time - and the results were positive for Down's Syndrome.

I deeply regret having the amnio.

And I am praying that I will be the 1% (or less) false positive for Ds.

That's where I am now.