Friday, January 29, 2010

A treasure found in the stacks

I had a couple of hours of "me" time the other day and decided I wanted to spend it with a hot drink and some time to just peruse the local Barnes and Noble. I decided to try to find a book I've been wanting to read. It's written by a bunch of different families, each with a child with DS, called "Gifts". The store didn't have it, so I asked to be directed to the "Special Needs" section. It was all of a 4-ft wide section, with nothing but books on Autism. There were literally two books that had anything to do with DS! So, I plopped down to flip through one of them and suddenly became aware of a person looking at books behind me. I suspected immediately from his short statue and chubby build that he had Down Syndrome. Then, as I listened to him, mumbling to himself about how GREAT this book was that he spotted, I got a glimpse of his profile and could tell for sure. I started to tear up. What are the chances????? I mean, really??!! So, I hung around and then followed him into the children's book section. I'm a terrible judge of age, (and probably even more so with someone who has slightly different physical characteristics), but if I were to guess, I'd say he looked early 20's. He appeared to be on his own, but there was a guy hanging out in the children's section not far from him, minding his own business, but not seeming to really be looking for a children's book, either. Maybe a brother? Either way, it was kind of a cool experience. The brother-guy giving the DS-guy plenty of space and the DS guy completely engrossed in some Secret Spy book. I know that he was looking at a Spy book because he would speak out loud, "Wow!!! Look at this Secret Spy book. This is SO cool. Wow- these guys are amazing! One book, I can get one book. Hmmm, I REALLY love this book!" Honestly, it was adorable.

And so there I was, in the midst of stacks of books at Barnes and Noble trying hard not to cry over the coincidence of it all. I lurked amongst the children's books for awhile, until I realized that this guy's book choosing quest could take quite some time and I wasn't feeling bold enough to go up to brother-guy or DS-guy and say anything. I mean, what am I going to say??? ("Spys, huh? Sounds good! Can I look too?") So, I ended my personal spying game and decided to head out. But, I'm still in amazement. I haven't seen a single person with DS since we found out this news, but as soon as I sit down to look at the Special Needs book section, there is someone standing directly behind me. I was honestly charmed by the whole scene.

Tomorrow is my photoshoot for "I'm Down With You" and I'm so excited. Excited that I'll get to meet people who have been in my shoes, and excited that I'll meet people who have something in common with my Peanut. ...And I won't have to think up some lame interest in Spy books to strike up a conversation with them. I have no idea what exactly to expect, but I'll keep you all posted!

Wednesday, January 27, 2010

Getting right with God

Everyone who reads this may, and probably will, have differing religions, spiritual beliefs and practices. However, because of my beliefs and the recent struggles I've had to make sense of, I feel a need to write about it. A good friend of mine asked me the other day about how I'm doing with the "Man Upstairs". And it's interesting that she asked when she did... I feel like there has been a sense to the pattern of things lately. The first book I decided to read from a short list of books that have something to do with Down Syndrome was "Expecting Adam". A book that's not really at all about Down Syndrome, but about a spiritual transformation based on undeniable occurrences that happened to one woman during her pregnancy and life with her son (who has DS) after his birth. Then, I picked up "The Shack", recommended to me by my OB GYN. All I can say is WOW. And I'm not even done reading it. I don't know what anyone else's response to this book would be, but I feel like it's reiterating experiences that the woman in "Expecting Adam" had and it's incredibly heart-wrenching, yet comforting at the same time. It's also not at all about Down Syndrome. It's about healing from a horrible experience and finding God despite it. Now, with that said, I was pretty shocked and scared and angry initially about the news that our son will have DS, but it is not a horrible experience- far from it. I was very angry with God right at first. It didn't last long, but it mostly stemmed from the how-could-he-think-we-will-be-able-to-handle-this idea (financially and otherwise). I was pissed and would yell, "Ok, God. If this is your plan, then it better be a damn good one, cuz we have NO IDEA how we're gonna do this. So, since we can't and you can, you'd better handle it!!!!"

I've gotten over the anger at God, but I'll admit that prayer has been a scary place for me lately. I'm scared that if I pray for something that God already knows won't be happening, that I'll be heart-broken, disappointed and pissed off all over again. My initial response was not to pray too much about Peanut. But, I think my OB GYN put it best. She said, "I like to think of it like this: I love it when my kids ask me for something. I can't always say yes, but I love it none the less. And I know God is like that too- he loves for us to ask him for things." (How cool is my OB, by the way???!!!) So, I finally started praying again...although quite honestly it sounds more like begging and pleading most of the time. I beg and plead for Peanut to have NO defects. I beg and plead for him to not need surgery when he's born. I beg and plead to be able to carry him to term. I beg and plead that I can have him naturally and vaginally. But, I know that this all may or may not come true. But, I'm praying again anyway. I guess that's progress.

Begging and pleading aside, I am blessed in so many ways. I cannot express adequately in words the support that the majority of my family and friends have expressed to us. Overall, I've never felt more loved and supported in my life, and I know how much Peanut is already loved and supported. There is still a little mystery to some extended family and friends that I struggle with a little. A few have sort-of expressed some care (without ever daring to mention the words Down Syndrome) and some got the news and I just never heard back from them. I get that most people don't know what to say, but I think because the vast majority of the people closest to me did say exactly the right thing, it seems even more out of place for those that say little to nothing. It worries me a little that this weirdness will persist. And, quite frankly, I want to be able to surround my sons with people who accept them fully- disabilities or not. So, I hope that the weirdness and "not knowing what to say" disappears when people see that we are okay- we are more than okay. And maybe we're even about to be blessed more than we ever thought possible. I think it might go that way. (But, every once in awhile I want to be confrontational: "Hey! I sent you a really detailed message letting you know what has happened in our lives and I never heard back from you. Did you fall in a ditch???")

P.S. If you're reading this, I can almost guarantee that this is NOT about you!! (Even though I've extended invitations to these people to read my blog, I sincerely doubt that it has happened.) This is in reference to some extended family and friends that were told the news either by me personally or through Charles, and then I heard nothing from them. Anyone who I don't normally speak to anyway is exempt. (Unless I sent you an email you never returned! :)) Okay, my venting is complete.

Wednesday, January 20, 2010

I heart Dr. Ballet!

(24 weeks, 6 days pregnant)

Great news- Dr. Ballet is not leaving to go anywhere!!!!!!! Woo hoo! Apparently, there was some kind of language barrier/miscommunication between Sue and myself. (I may have to rename "Sue", because I found out she is from Albania, and I'm guessing "Sue" is not a common Albanian name. Anyone have any alternate Albanian-sounding name suggestion? ...As you can tell, I didn't actually ASK her name, because then we would have to go round and round with the whole spelling thing again...)

So, I saw Dr. Ballet yesterday and had another good appointment, for the most part. We got equally good information as our first visit, but this time he was much more personable. I also love how knowledgeable and cutting edge he is with the nutrition information. It's not very common to see this in most doctors (plus he clearly practices what he preaches, which is also refreshing.) The still scary news, however, is that there are two pretty serious defects that he cannot yet rule out. They are called Tracheoesophageal Fistula (TEF)and Esophageal Atresia (EA). Basically, Peanut was not fully cooperating during the ultrasound, and was too content playing with his toes and then dropping off into a good nap (in an uncooperative position) to give the doctor a good look at his Trachea and Esophagus. Dr. Ballet's attitude during our appointment was very optimistic and upbeat, and he confirmed that he sees no heart defects. Even with the possibility of TEF and/or EA, he didn't take on a more somber tone. I Googled these things later. Either or both (sometimes they exist together and sometimes separately) would mean surgery as soon as Peanut is born. The defects cause the baby to not be able to take food into the stomach at all, or the food can be directed into the lungs via the opening between the two tubes (a fistula). Both can be corrected surgically, but there can be some lasting digestive problems as a result, and a newborn surgery scares me: a lot of tubes, oxygen, and drugs...not to mention the actual surgery portion! I AM nervous because there are a couple of small indicators that one of these defects could exist. Additionally, the presence of one or both also puts me at risk for pre-term labor. However, I am actually not obsessing about this. Dr. Ballet reminded me that the continuance of a positive attitude, good nutrition & supplementation, and plenty of rest go a long way to giving our little Peanut the best possible chances. I am really taking all of that to heart. I decided that I really need to continue to work on the positive attitude- despite all of the scary medical stuff and the fact that life brings it's own challenges (see my post on "Sleep Training"- Yikes!) I had gotten into a big argument with my Mom (over nothing worth arguing about) and it was left unresolved for a full day and it was really upsetting me. So, when I had a chance yesterday, I called her and cleared the air. I don't want that kind of stuff floating around in my already over-taxed brain right now. I am also going be praying (and asking all I know who believe in the power of prayer to join with me), that God take on these burdens and that Peanut does not have TEA or EA and that God's path for me is a full term, natural, vaginal birth to Peanut (who will hopefully have a name by then!) I really want miracles...I do.

Everything that has happened- from the positive AFP blood test to the current ultrasounds- has me questioning my intuition. I have always prided myself on having a very strong intuition (even when I don't listen) and being very in touch with my body. But, I can't access it now. I don't know if I'm trying not to listen because I'm so desperately hoping for everything to be okay with Peanut's health or if my intuition is not telling me anything or if my intuition reader is just broken or if there is just too much extra information to be able to weed through it all. It's very frustrating. When I was waiting for the results of my amniocentesis, I told a very close friend of mine that I didn't know what my intuition was telling me because of how clouded my brain was with new information...too much information. She suggested that I think about what my intuition was telling me BEFORE I got all of the information. When I thought about it, I realized that I truly thought nothing of it and thought that everything was great with the baby. She said, "Then that is your intuition." Well since then, we found out that Peanut has DS, but I've also realized that maybe my intuition wasn't wrong at all. As far as we know, there IS nothing wrong with the baby. He just has an extra chromosome. So, I'm going to try to hold onto that for now, until I feel my intuition working again.

Last thought: Tonight I spoke to the photographer who will be shooting pictures of me for his project "I'm Down With You". I had chills from head to toe over much of what he said in our short conversation. He mimicked the idea of being chosen to raise a child like this, and said that in his time working within the DS community that he has begun to wonder if they (people with DS) are really the ones with the disability... (Chills again.) I'm really looking forward to being part of his project and meeting some of these people that have changed his life and his perspective so greatly.

Friday, January 15, 2010

Sleep Training...AKA Mommy in Training

I have been forced back into sleep training this week. When I originally did sleep training with Christian at 4 months old, it was a whole different ballgame. ...And I could drink wine. Now, I've got cunning toddler escape tactics coming at me left and right. After watching a good handful of SuperNanny back-to-bed tactics, I thought I could do it. The technique calls for no talking after the first time you put them back in bed. Well, to my son, this seems to be an enormously enjoyable, even laughable, game. The laughing gets me- it apparently is my "button" and Christian knows just how to push it. Damn you, SuperNanny. I feel like I'm groping in the dark for some answer that doesn't come. I am an avid parenting book reader, but what I've realized is that they don't always SAY that much. So, I'm sure I'm doing it All wrong, but it might not be completely failing because although Christian didn't actually ever nap today, I only had to put him back in bed about 20 times- down from the 40 times it was on Wednesday. Tonight, I only had to put him back about 12 times or so. So, I guess it's moving in the right direction, but I feel too wrung out to appreciate it yet. As my pregnancy progresses, I'm feeling more pressure to lock in some of these toddler transitions with Christian, because once I have a baby in my arms it is going to be a lot harder to discipline him than it is now. (This became abundantly clear as I was practically wrestling Christian out to the car after a brief day care visit, while balancing a painted & glittered pinecone, my purse and him. If I can't manage a pinecone and my toddler, how am I going to manage a BABY and my toddler! Yikes!)

A few days ago, I came across a You Tube video called "I'm Down with You," posted by a new online friend I've made in the DS community. I was really touched by the footage. Check it out:



Then today, I got an email from the executive director of the Down Syndrome Association of Los Angeles (totally unrelated to the online friend), asking if I would be interested in participating in a coffee table book project called "I'm Down With You". (!!!!) The photographer is looking for expecting Mothers with a diagnosis of Down Syndrome for their unborn child. (!!!!) I think it would be a great experience, and maybe I'll even finally meet some parents (with children who have DS) in person. So, I said yes and have a time slot to be photographed on Jan 3oth. I'm really excited to be a part of something that is shedding such a positive light on DS, and that it will be something I can share with my boys when they're older.

Sunday, January 10, 2010

Hell-Bound

(23 weeks pregnant)

I'm kinda pissed off today. Not actively pissed off, but irritated-pissed off. Other than the first day I found out about Peanut's condition (when I had a few choice words with God,) I haven't been too mad about our situation. But, I think there have been a small accumulation of things that have me kinda pissed off today. Firstly, I should warn you all upfront that I am probably going to hell for some of the things I'm thinking, and now writing down. I decided to only research personal stories of DS, because I felt it was more uplifting and informative than all of the scary medical stuff. So, a few days ago, I clicked on a You Tube link that featured a 10 year-old girl with DS. My mouth dropped open and my first thought was, "Oh my G-d, she's so fat. Why is she so fat?" (See?! Hell is beckoning me.) She had some strange skin issue going on, plus the weight problem, plus coke bottle size glasses. It's depressing. What she was doing in the video would have probably been cute if I could've gotten over the shock of her appearance. A bunch of other people commented on the post..."How cute!", "What a sweetie!", "She's precious." ...And I am going to hell. I know there could be a million reasons why she was so overweight, and DS might not even be the biggest part of the problem. ...Her parents could weigh 400 lbs a piece for all I know. Maybe she eats Cheetos and Coke at every meal. Maybe the skin issue was a one time rash, badly timed with her debut on You Tube. But, I really hate that I'm thinking these things. I'm supposed to be a "bigger" person than this. Then, today, I found an article from the UK about a Mom who posted an ad to try to get her 21 year-old son with DS laid. ??!!!! She felt that she wanted to make sure he had every "normal" experience that people have. Ummm, hello? Is it "normal" to post an ad to get your son laid, DS or not??? (I have MANY strong feelings about this being extremely inappropriate.) This piggy backs on the recent conversation I had at a party. I will preface by saying that I know this woman was trying to be supportive. So, here it is: I'm talking to an acquaintance who knows our situation and who tells me about a good friend of hers who has a son with special needs (I believe he has Autism) and how this Mom will do anything to help her son. So, since this boy is a teenager now, she is teaching him how to masturbate. ("Please stop talking, please stop talking"...I try willing her to stop.) She doesn't. We go on like this- She, talking about how her friend just steps up to the plate and does what needs to be done. Me, feeling like I couldn't have heard ANYTHING worse in my entire life. Until now, I haven't shared this conversation with anyone. It was THAT traumatic for me. Is this what my life is going to be like??????????????? Kill me now.

Flash to my conversation with Charles last night. I own up to a couple of these thoughts and he reminds me that we don't know what is to come yet and until we do, we can't guess what it'll be like. Genius. THIS is why I love my husband. When I really need him to come through, he does. Every time. The thing is that I KNOW this in my head, but I can't stop the simultaneous freak-outs that happen on a daily basis. But to be a little fair to me, I am the one being kicked in the ribs 100 times a day, where he is not. I feel Peanut all day, every day and I can't help but worry about him already. After all, I am his Mother.

So, there it is. I actually said it. ...Well, I wrote it, which is almost worse because it's recorded. You can all use it against me when I'm being bad.

Hmmm...you know what? I actually think I feel better. ....Interesting.

Saturday, January 9, 2010

"Live as if you were to die tomorrow. Learn as if you were to live forever." -Mohandas Gandhi

I got alarmingly sad news tonight. A young girl (aged 15) who I have been teaching ballet to for the past couple of months died. It seems that she had an aggressive cancer, but I don't know the details. It is a shock and it is a tragedy for her family and for those of us who knew her. She was a beautiful, bright, warm, charismatic girl who was a hard worker and a dedicated dancer. The quote by Mohandas Gandhi reminds me of her. I don't know when or how she found out about her condition, but even the last time I saw her she was working as hard as ever to improve and learn. It is a lesson in life for all of us. Since finding out about Peanut's diagnosis, I have been struck by the seeming randomness of so much. My spiritual beliefs go deeper than randomness though, so maybe "unpredictability" is a better word. I never in a million years would have thought that I would be giving birth to a baby with Down Syndrome. I never in a million years would would have thought that cancer would take the life of a young 15 year old girl who I teach ballet to every week. I never in a million years would have thought that one of my close friends would be battling stage 4 breast cancer. It's all unpredictable and we can make our Plans, but it is a reminder to do what we love, to love those around us and to cherish every minute as if it were the last.

It doesn't feel right to write about other things tonight. I think it'll be good to just remember to be grateful for what we have today, because tomorrow is not promised to us.

Thursday, January 7, 2010

The art of research and procrastination

I read a GREAT book yesterday, called "Expecting Adam" by Martha Beck. I can't stop thinking about it, and I love books that make you linger on them long after you've finished. It's a memoir about a woman who is working on her Phd from Harvard, has an 18 month old daughter and finds out she's expecting a son with DS. Well, those are the facts...What it's really about is Transformation. Becoming someone you never thought you'd be, through an experience you never thought you'd have. It makes you think.

"Expecting Adam" is the kind of research I've decided to pursue. Those of you who know me well, know that when I come across something I need to know about, I am the first one to Google exhaustively and then get every book on the subject to educate myself. I started doing that when we first got the diagnosis, and to say it was overwhelming is an understatement. The laundry list of things that could go wrong medically is mind boggling- everything from heart defects to digestive issues to being short....Yup. It was the "short" thing that set me off into a blind panic the other day. It's pretty funny now, but it was another step in the "rearrange your expectations" transformation that I am currently undergoing. Every time I read something, I start panicking about the possibilities. It's just too much. So, I reached out to an online support network of parents who have children with DS. What they ALL have said is to basically step away from the research because most of these lists will not happen to one child, and if and when any of them happen, THEN do the research. This makes sense to me. So, I've decided to read real stories and talk to real people and that's it for now. (Well, mostly...I am human, and I am a Google junkie, so there could be set backs...)

Now...about Procrastination...
Procrastination is such a common part of my life that I am actually beginning to wonder if God is using it as one of his communication tools with me. This is what I mean: I had a great appointment with my new perinatologist about a month ago and when I was leaving his office, I was unable to make my follow up appointment because their computers were down. I was supposed to make the appointment later that day (or the next day) for 6 weeks from the date I was seen. 4 weeks, 1 day later (today), I panicked when I realized I still had not made the appointment. I called and the receptionist (I'll call her Sue, because I cannot for the life of me remember or pronounce her real name...I think I even had her spell it for me & still nada) started looking up dates. Sue gives me a date and time and says, "You'll be seeing Dr. Not-your-doctor." I corrected her and told her that he's not my doctor. Sue informed me that my doctor may not even be returning to the practice and that I would have no choice but to see Dr. Not-your-doctor. (This is not his real name because, again, I have no idea what she said...I even asked her to spell it...By now I'm sure Sue believes that I have some spelling fetish or something.) I got off the phone and nearly wept because I had finally found a Doctor I really like and trust and who (bonus) even used to dance ballet!!! (I took this as a sign of kismet, because what perinatologist is a former ballet dancer?? And then to have that former ballet dancer/perinatologist treating me (a former ballet dancer) was just too perfect.) So, I glumly opened up my calendar to add my new appointment, and noticed that she had accidentally scheduled me for the wrong month. I called Sue back and told her the mix up. She gave me a new date and time and said, "You'll be seeing Dr. Ballet." ???? Ok. What? Whatever. That's good! So, now I have a chance to see my beloved Ballet dancing/ Perinatology doctor again and hopefully find out why or where he is leaving to. I pray he's not going to do Doctors without Borders work in another country or something. I know...it's really bad to be praying that your doctor not go to help needy people, living in poverty stricken conditions, who never get medical treatment. Sigh. I hope he's just moving his practice. My point in all of this is the procrastination. See? If I would've made my appointment when I should have, then I wouldn't have known Dr. Ballet was going to be leaving the practice and then I wouldn't have known to interrogate him about his next whereabouts. Right??!!..... Maybe I'm just reaching for straws because I truly am procrastinating so much else in my life- contracts for Event clients, choreography for ballet recital, laundry, bills, etc. I normally procrastinate, but now there's so much more on my mind.

That's it for now. It seems my brain is powering down for the night...

Sunday, January 3, 2010

Am I chosen?

In the seeming randomness of conceiving a child with an extra chromosome, there have been some thoughts running through my head...obviously.... :) Some of these thoughts revolve around the idea that our baby was chosen, or chose, to be part of our family. To have me as a Mother and Charles as a Father and Christian as a brother. This kind of thought gives me a lot of strength somehow. More than a few friends have echoed this concept of "being chosen". And from the first day that I got the news, I had a sense of having been chosen.

This "sense" of being chosen, made certain conversations difficult for me. For example: I was at a party being thrown by a close friend, and I sat down to talk to someone who had seen the same doctor I am seeing, and wanted to ask her opinion about the doctor. I filled her in on what was going on. She gave me a lot of great insight about the doctor, filled me in on what all she had gone through in her difficult birth process, but also wanted to make sure that I knew I had a "choice". She said, "You know, Jen, you don't have to keep this baby. If you get pregnant again this won't happen again. You have a choice." Firstly, I would like to state for the record that I don't think there is anyone alive (old enough to understand) that doesn't know that abortion is an option. It's an option for some people and some circumstances. And it is very personal. I really don't think people need to be counselled one way or another unless they ask for it. So, I told her that I couldn't consider terminating the pregnancy because I already feel connected to this baby, and I already feel that he is my son.

I like thinking that I was chosen for good reasons- not because I'm being punished or disciplined- but because there is a piece of the puzzle that is yet to be discovered. This thought doesn't take away all of my fears, and it doesn't completely relieve me of the grieving for what I thought was going to be, but it does make me feel connected to Peanut. I am very grateful for that. If I found out tomorrow that this was all some lab error and that Peanut did not have DS, I actually wonder if I would be just a little disappointed? The DS is not WHO he is, it is a condition he has, but it has bonded me to him in a way I didn't expect, and can't fully describe.

My last thought comes from a beautiful poem/article written by Erma Bombeck (and brought to my attention by a sweet friend who used it as a strength for herself at one point.) Check it out at: http://www.down-syndrom.ch/Poem5.htm

Saturday, January 2, 2010

Life in perspective

(22 weeks pregnant)

I feel like God is holding my hand. When I choose to see them, there are little gifts, little signs all around me to let me know that yes, life has changed, but it's not going to be all bad. Maybe even far from it... I actually had a fleeting thought a couple of days ago, in a moment of "poor me". I was thinking about how before Charles, I had been married to a bad man. A man who I made excuses for and tried to "fix" by being good enough, loving enough and accepting enough. Until I realized that enough is enough. I thought, "God, wasn't that the hardship for my life? Wasn't that enough?" It was a fleeting thought, but it was there.

Then I got a phone call that changed my perspective. It went like this: Him, "Is this Jennifer?" Me, "Yes, it is." Him, "Were you married to a man named (Name to be withheld to keep him the F out of my life)?" Me, (Debt collector? Undertaker?) "Yes, I was." Him, "Are you still married to him?" Me, "Uh...No I am not. I have not been married to him for about 9 years now." Him, "Oh. Okay. Because he is sleeping with my wife." ........................WHAT??!!??!! I almost wanted to laugh, but stopped myself with the sobering thought that this poor guy is in the midst of major heartbreak. I said instead, "I am so sorry to hear that. I wish I could say that I am surprised, but I'm not." We had a short conversation about when it started and what was happening now. Although this poor guy seemed out for some payback, his level of hurting was very clear to me. I got off the phone feeling somewhat validated over the fact that I wasn't wrong about my ex's character and that I was right to know that I was not the only one that stuff happened to. Later when I had a little more time to reflect, I realized that I would rather be in my current situation, dealing with some somewhat atypical concerns than have to deal with the soul-sucking kind of concerns I had in that marriage. I know that we have challenges in front of us, but I also know there will be joy. In the end we're bringing a BABY into this world. A baby who just happens to have one extra chromosome. And maybe even a baby who will bring us more joy than concern...
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