Friday, February 26, 2010

And Breathe...

Can I just start by saying, "UGH!!!"?

The thing about knowing that you're going to be a parent of a child with special needs, is that you start worrying EVEN MORE than normal that somehow you're not up for the job, or that you'll mess them up really badly, or that "Why, if God knows exactly what he's doing, would he choose US...completely flawed, often self centered and occasionally emotionally unstable people, as parents??" All of this thinking comes along with the daily struggle of trying to raise and discipline a very independent toddler who is testing and challenging me on a minute by minute basis. And reflecting me...which is scary. I am at a loss, and being hormonal and pregnant does not help my situation. To be specific, I don't know what to do about Christian's cursing. I tried completely ignoring it in the beginning, but it seemed to escalate. Now, he's trying out his favorite phrase in public, at the mall, and over at friends' houses, and each time he uses it somewhere new, I find myself shocked and unable to completely restrain some sort of facial reaction. I've tried saying that these are not nice words and I don't like them. He actually seems to respond okay to this and it seems to stop it temporarily, but I don't know if this is the right thing to say and do. Then, I wonder if I'm jumping from tactic to tactic too quickly and not giving one method a solid chance to work. UGH...I'm getting a headache just thinking about it. Then, there is the typical behavior stuff: not listening, testing me to see if I'll follow through, getting into anything and everything, tantrums, etc. Charles said tonight, "I feel like the world's worst Father." I replied, "And I feel like the world's worst Mother." There is a small amount of comfort in the fact that I guess we can't REALLY be the "World's Worst Parents" if we're making statements like these. In my mind, the actual "Worst Parents" probably wouldn't even stop to think if they were good or bad at parenting.

I got to meet up with Tracy, the woman I met online on the DS network. Her little baby, William, is 16 weeks old and has DS. It was both encouraging and sobering. The conversation with Tracy was great, because I got to ask her all about her experience when William was born, and what the first 16 weeks have been like. She also has older children, but they are much older than Christian. There was one thing that was...interesting...and I'm not sure if I'm reading into something that's not there. The waitresses, who were all over Christian and how "cute" he is, were pretty quiet when it came to baby William. They looked at him curiously and one asked, "How old is he?" Tracy replied that he's 16 weeks, but that he's a little guy. I guess I just expected more fuss over a baby, but maybe a precocious 2 and a half year old was just stealing the show. There just seemed to be a strange curiosity present, and I'm not sure if it was real or imagined. I wonder if Tracy felt it too... I guess I may have my share of these real or imagined moments when Peanut comes along, because he will be a little different than most babies. I don't know HOW specifically yet, but he will be. ...Maybe he won't curse. That would be different, but nice. Maybe he'll listen to me, maybe he won't "test" me and throw daily tantrums...that would also be nice. Although, just like Christian, I'll love him anyway, no matter what.

Monday, February 22, 2010

Nesting, nesting...

Well, the "nesting" phase is kicking in. At almost 30 weeks pregnant, I am having intense feelings of wanting to be ready for little Peanut. I have a lot of organizing to do and I'm nowhere near where I wanted to be with Christian's checklist (Potty trained, into a toddler bed and sleeping without a binky.) And, it's okay. I had a great talk with one of my closest friends the other day about potty training. Her experience was that they didn't push the potty training onto their daughter, didn't do a potty training boot camp, and thus she was using the potty a little bit later than some, but it was a non-issue when it was finally time. The last thing I want to do right now is go on an all out potty training boot camp where I'm stressed and wanting to pull my hair out, only to have Christian regress as soon as the baby comes home from the hospital (which is MANY people's experience, as I've learned.) Christian is successfully sleep trained in his new big boy bed and I will take away the binky sometime very soon (I'm thinking of taking the plunge this weekend.) But, other than that, I'm laying down the list of "should's" for now. Our household has been REALLY stressed out the last couple of weeks and I really think that Christian has been affected by it (See my last post for the new curse words gracing the lips of our toddler.)

In an attempt to begin organizing, I pulled out all of Christian's old clothes, and sorted them by age and also made a bag for Goodwill. It was a fun trip down memory lane and even though I still need to get some sort of major closet organizers to make the boys' room a livable one, I feel a little better that I'm making progress. I'm also making plans for upcoming pre-baby gatherings. At first, I really didn't think it was a good idea to have a baby shower for a second baby (especially a same-sex second baby), but after a little insisting from my Mom, I've succumbed to the idea and am actually getting really excited. I do like the idea of knowing that I got a chance to celebrate Peanut's arrival and the act of having a shower seems to really show the love and support that is surrounding him even before he makes his debut into this world!

On another note...I've been in contact with a woman who has a newborn (now 14 weeks old?) that I've met through the DS online network. We've spoken on the phone once, chatted via email, and now she's coming to Encino on Thursday morning. We're planning to meet up in person. I'll also get to meet her little baby boy, William, and I am really looking forward to it! There is an interesting dynamic amongst the parents of children with DS- it's almost as though I've been initiated into a very special, elite club. Maybe it sounds strange to say it that way, but it was a similar feeling when I first became a Mom. Once you're a Mom, you are immediately accepted into the "Mom Club". A club where perfect strangers will give you the benefit of the doubt, lend a helping hand and smile, even when they don't know you. There is other stuff too, though... I call this "The Mommy comparisons": where the babies social skills, motor skills,and language skills, as well as the Do-it-all-Barbie-Mommy skills get compared. This is where I feel like the new "special needs" club seems far. It seems to be just like the regular Mommy club, but without comparisons and with less judgement toward the children and parents. ...And considering that DS accounts for only 1 in 755 live births, it is an exclusive club also. I'm beginning to think this "club" mentality is a really necessary one. Yesterday on the DS online network, a parent posted a warning about a Facebook page where children with Down Syndrome are ridiculed by a person who "steals" photos of other people's children with DS and uses them for evil. A link was included, but I didn't look at it. Some things are better not to be researched. There are truly sick people out there, and it's possible that having a child with special needs might bring me closer to those kind of oddities. So, I have my new "club" to lean on.

All in all, I've been feeling great, physically, and after a tough couple of weeks, am feeling more optimistic about our finances and our future too. I'm not always able to access my faith that everything will be alright, but today I feel that everything really will be alright. And after a night of sorting baby clothes, I'm really looking forward to some of those sweet newborn moments where you're memorizing every inch of their face, and they fall asleep right in your arms. Those moments in the middle of a sleepless night, where you are their only source of comfort. These moments are so fleeting. Everyone warned me about how quickly the time flies, and it's hard to believe before you have a baby, but it is very, very true...:)

Monday, February 15, 2010

Hormones. (You've been warned.)

I'm not sure how to begin, other than to say that I committed to myself that I would be completely honest in my blogging, as a way to deal with everything going on. So, honestly... I have not been doing very well for the last few days. I think I was able to put my energy into processing all of the news and feelings and adjustments that need to be done regarding our little Peanut. Until other harsh realities hit. In our case: the economy. We are definitely not the only ones to be experiencing financial and employment challenges these days. But, I think my skin is thin right now. Between pregnancy hormones, Christian's terrible two's stage, and financial crisis, I am just having an especially hard time dealing. I am worried. I am very worried and I haven't been able to put it to rest yet. In all of the worry and stress, I feel like the worst parent in the world and that Christian is acting out as a direct result of some neglect or bad parenting on my (and Charles') part. Yesterday, as Christian is flipping through an Elmo book, he says something that sounds like, "Fuckin move." And he repeats this a few times. I'm thinking that he must be saying something about a truck and that it's just coming out like the bad word instead. Then comes the follow up word, clear as day: "Goddammit." Then repeated over and over. I said, "Don't say that." His response: "G-ddammit, G-ddammit." I just said nothing, walked away and went and sat in my bedroom. It's kinda funny, but it's also really not. I didn't want to make the word exciting to Christian and since he's not even using it in context, I know that he was probably just repeating something he'd heard Mommy and Daddy say. GREAT. I don't like it when I lose it and curse, and I like it even less to hear it repeated back in the voice of my 2 and a half year old son. And I can't control Charles. He is a wonderful guy in so many ways, but a virtual "Nick Nolte" in his use of explicit language. So, here we are...struggling with intense financial issues and concurrently teaching our son the worst of lessons. Excuse me a moment while I go polish my Parent of the Year award...

Tonight, in an effort to unwind from a mostly stressful and awful day, I opened an email from the online support group run by the Down Syndrome Association of L.A. (DSALA). A parent posted a message, basically bashing the DSALA, because she had recently bought tickets to a comedy event sanctioned by the DSALA. The comic line-up was recently announced to including headliners like comedian Sarah Silverman. I have always found Sarah Silverman pretty crass, and while I occassionally found her comedy funny, I was mostly ambivilent about her. However, since it's the hip thing now to bash anything Sarah Palin (who has a son with Ds), Sarah Silverman has jumped on the bandwagon. Since Palin wants the R-word banned because of the hurtful, derogatory meaning it has, comedians like Silverman think that if you "drop the R-bomb" over and over again that it will lose it's "power". Interesting concept by very ignorant people. I was once also ignorant. I'll admit it. Even though I always aired on the politically correct side, I still sort of rolled my eyes at the number of PC terms that we have to keep up with. I thought: a rose is still a rose by any other name, right? Wrong. Now that I have personal stake and fledgling understanding of what it is like to be on the other side, I see how deeply words can hurt people. And, to me, it will just never be cool (or funny OR smart) to purposely hurt people. (Click here for my info on Sarah Silverman's comedy.) What bothers me even more than unfunny comedians is actually the negativity within the online support group toward the DSALA. I feel a little protective. So, I responded to the negative post with a comment to the effect of, "Hey! Some of us are new here and really need support, not negativity." (Because once the hormones start rolling, they seem to pick up speed, don't they? Mommies- are you with me?) I actually got a very nice and explanatory response back from the original poster, sharing a bit of the experience that led her to write what she did. The truth is that I 'get it'. I too, say what I think and occassionally get myself into trouble for it. It's cool. But I do need these other parents in this group right now. I need them so that I know I'm not alone.

Okay. I think that's about as upbeat as I'm going to get tonight. HA...I bet you're wondering where the upbeat part was...I probably missed it too. However, like other times, writing about it all actually has me feeling like I can go to bed and get a good night's sleep. Then, I'll wake up tomorrow and be "Snack Mom" at Christian's preschool. ..And hope he doesn't land me in the principal's office for cursing...

Monday, February 8, 2010

Life gives no guarantees

Today was a day full of doctor appointments and rushing around. It was a mostly frustrating day, up until my appointment with Dr. Ballet. I think he was just scheduled to take measurements of little Peanut today, but because he hasn't been able to shed any light on the trachea and esophagus, he also took a look at them today. He seemed fairly confident that there were no Esophageal Atresias (EAs), which basically means there are no severe blockages. He also got a decent look at the trachea and esophagus and neither seem to be showing any defects. He thinks that if a Tracheoesophageal Fistula exists, that it is probably pretty minor and it likely wouldn't be anything we'd know about prior to birth. (Surgery could still become necessary.) So, it all became pretty clear to me today...we're not going to know everything or maybe anything for quite some time. And then we still won't know everything or anything... In fact, when do we know anyting?? I walk around most of my life thinking that there are basic guarantees. (If you asked me, I would probably answer logically that there are no guarantees, and that nothing is promised to us in life.) But, I think to a certain degree we all assume that we'll leave for work and come home later that day, that our children will grow and prosper according to plan and that we will grow old and eventually die of "natural causes"... Strangely, I'm not upset by the lack of solid answers. We got basically good news today, and Dr. Ballet continues to say that he's "pleased" by what he's seeing in both my pregnancy and the baby. The fact that he won't be able to say conclusively that our son won't need surgery upon birth is part of life. It's just a little bit freeing to REALLY realize that this life we have is an adventure and a journey that can only be revealed a little bit at a time. Plus, I've never been one to read the end of the story before the beginning, so I think I'll try to let our story play out as is. What I know right now is this: Our baby has Down syndrome. I love him already. Peanut has no defects visible by ultrasound. I have a slightly "generous" amount of amniotic fluid. (Isn't that nice of my amniotic fluid to be so generous??!!) My pregnancy has been a pleasure so far. And lastly, somehow- though I don't know exactly how- Everything is going to be alright.

While going through Peanut's exam today, Dr. Ballet shared some interesting facts about himself. He shares some physical characteristics frequently seen in people with Down Syndrome. For instance, a common trait in Down syndrome is for there to be more space between the big toe and the other toes than is typical. Dr. Ballet has toes like this, and we laughed a bit about it's relevance to his sports-playing and ballet-dancing days. Also, a single line across the palm (instead of the typical two lines), called a simian crease, is common in chromosomal abnormalities (in particular with Down syndrome.) Dr. Ballet also has this simian crease. If you Google simian crease, you'll get some palm reading information. I have never put much stock into palm reading, but it is very interesting what is said. The two horizontal lines on a typical palm represent the Head and the Heart lines. If a simian line exists, then these two characteristic are merged. What the general summation is, is that the individual is a very intense and unique individual. Maybe I've twisted some of the Palmistry meanings to suit my own pondering, but I personally think they might be onto something... The simian line exists about 50% of the time in people with Ds, so we won't know until after birth (surprise, surprise) if our son has one or not. Dr. Ballet actually said that it's probably a good thing that his Mother had not been made aware of his simian crease and the space between his toes prenatally, as it's possible it would have been mistaken for Ds. The way he said it made me think that he was referring to the number of people who terminate based on these types of findings. It's possible that I'm just projecting my current struggles onto what he actually meant. All in all, today has been very thought provoking for me.

Off to bed for me...

Saturday, February 6, 2010

I'm not alone!!!!

One of the overwhelming feelings I've been having is that of feeling "alone" in this. Which is different than saying I'm lonely. I'm not lonely because I have so many friends and family that I'm blessed by, but still none of them are going through what I'm going through. It turns out that there is someone who is going through nearly exactly what I'm going through... and she found me. Since her and her husband are still very much processing and figuring out how to share the news, I am just going to call her, "Kindred Spirit", or Kindred, for now. Kindred is due 5 days earlier than me, is expecting a boy, and recently found out he has Down syndrome. (Oh! AND she has her next doctor's appointment on the same day as I do! Totally useless information, but cool none the less!)She even lives within 40 minutes driving distance from me. We've exchanged a couple of emails and everytime I reply I feel like I'm gushing on and on and have to make a conscious effort to stop myself. It's not uncommon to meet or know people who are expecting around the same time you are, having a baby of the same sex and have coordinating doctor's office visits, because there are SO many people having babies. My good friend Carrie is due just a week before me, is having a boy and has doctor's appointments about a week before me every time. There is so much I get to talk to Carrie about: the sins of maternity clothes, our changing bodies, hormones, feelings of excitement/fear/anticipation about having our second babies, and more. It is actually really fun to share the experience with someone you like so much. But, I am now feeling doubly blessed by this new "friend" who can relate on so many levels to the emotional rollercoaster that comes with getting a prenatal diagnosis of Ds. There are very few of us that decide to carry to term and know about Ds before birth. In my last post, I thought the numbers were something like 80-90% of women who get a prenatal diagnosis of Ds, terminate their pregnancies. I was wrong. It is 92%!!!!!!!!!!!!!! So, Kindred and I are in the 8% who chose to have their babies. 8% is mind boggling. 8% isn't common. And 8% certainly explains feeling alone. So, it's especially nice to know that I'm not alone!

I finished another great read. This one is called "Road Map to Holland". The author, Jennifer Graf Groneberg, writes a very emotional and heartfelt description about her son's first two years with Down syndrome. It is uplifting and terrifying all at the same time. Jennifer didn't have a prenatal diagnosis and had to do all of her coping and processing after her sons were born (twins- one with Ds, one without). Plus, her babies were 7 weeks early (UGH!!), so the fears and concerns while dealing with the NICU seem pretty overwhelming. Since my last visit to Dr. Ballet, I am still concerned about this tracheoesophogeal fistula possibility- especially since it can lead to pre term labor. I have another appointment on Monday and I'm wishin', hopin' and praying that there will be no defects at all!!

Since I'm wishin' and hopin' again, I'll leave you with a little clip from what now seems like a lifetime ago...

Tuesday, February 2, 2010

I'm already changed

Saturday was my photo shoot for the "Down with You" project and I think I might be forever changed. The photo shoot itself was fun and I got one of the best compliments in a long time... When the photographer met me, he said, "Wow. You are so beautiful. Does your husband wake up every morning and just high five himself?" HA! Too funny! Of COURSE my husband doesn't high five himself over my "beauty", but it's nice to get that kind of compliment when your belly is growing by the day! But the best part of the shoot was getting to meet the parents and also the babies, children and adults with DS. I was mostly pleasantly surprised by their abilities and definitely charmed by their personalities. There was Katelyn, almost 7 years old who was just a joyful, adorable girl. She couldn't have been cuter. When her Father suggested she take a picture with Sharon Stone (who was there supporting the project and a personal friend of hers with DS), Katelyn sort of pouted and said, "Why??!!" Why, indeed. :) And there was Bella, only 9 months old, but who seemed only slightly delayed from a typical 9 month old. She was as precious as any baby I've met. Then there was Kailey, 18 years old, and very much a typical teenager. She talked about how she loved to sing and every once in awhile would just put her head on her Mom's shoulder as a way to show her love. I adored these three in particular because I spent some time with them. I also had amazing conversations with the other parents about how they found out, where they live, what things they consider to be challenges...It was incredible! I left with my head spinning and a little overwhelmed- but in a good way.

Days after the photoshoot, I didn't realize that a real shift has happened for me. Until today. I got to talking to a woman who I don't really know- her son and my son go to school together. But, I happened to run into her at Dr. Ballet's office at my last visit, so she asked if I had seen him during my pregnancy with Christian also. I said no, that we were seeing him for specific needs of this pregnancy. She said, "Is everything okay with the pregnancy?" I responded by saying that yes the pregnancy has been fine, but we found out that our baby has Down Syndrome. She said, "Oh, I'm so sorry!" I told her that we're doing pretty good with the news now, and that while there will probably be unforeseen challenges, that we expect there to be a lot of joy too. She seemed doe-eyed at my response. It was then that she admitted that her previous pregnancy had resulted in a baby with Down Syndrome, but that they had decided to terminate. She is currently pregnant, but hadn't wanted to tell anyone until after her 12 week visit when Dr. Ballet could confirm that there was no Down Syndrome. (I guess she would've terminated again and didn't want anyone to know?) She was welling up as she talked about this... I have always considered myself a pro-choicer, and I think I still am, but I found myself judging it a little after the fact. I have been thinking about all of the reasons that I could support the termination of a pregnancy: serious organ defects, horrible quality of life, even being young, single, and stupid. But, when presented with a woman who is married and trying to have a baby, who terminated solely on the basis of an extra chromosome, I got a little upset inside. I had heard that approximately 80-90% of all prenatal diagnosis of Down Syndrome are terminated. This would explain why the hell I feel so alone!!!! And now, because of Saturday, I can't help but think that there might not have ever been a Katelyn or a Bella or a Kailey if their parents had followed suit and terminated... What I never realized was that MY decision NOT to terminate, would bring about so much guilt in others- and I know this because somehow my openness and honesty about our situation has brought on a flood of "confessions" much like today. I am damn scared about the possible medical conditions that can exist with Down Syndrome, but I can't think of my baby as anything other than baby. A gift. And maybe he won't solve the world's problems, but he will have value.

I am not a right-winged conservative, and I am not leading the cause for the pro-life movement, but I've discovered that others choices do, and are, affecting me. Especially today. We can call it hormones.