Friday, September 18, 2009

Our New World

Read at your own pace, as this is quite a long entry.

Yesterday around 1.30 PM I was sitting at the coffee table looking at, text messaging with my friend Katie and Miles, and settling that I needed to shower since I’d just finished a huge lunch. Within five minutes of Katie asking me when I’d hear about the results, I received a call from Dr. Buehner’s office.

As soon as I heard his voice on the other end, I knew that the amnio results had come in. Any other time the nurse usually calls. I’d called again that morning because I’d been cramping again, and not just when eating or walking and thought that he should know since I had a potential high-risk pregnancy and/or an unhealthy baby.

For posterity sake, I want to just write it as I remember the conversation going after the typical “hello” and “is this Brittany”.

Dr. Buehner: Well, your amnio results came back today.
Brittany: Okay...
Dr. Buehner: Unfortunately, they came back positive for Down syndrome. I’m sorry to tell you that. They found three of the chromosome 21 in the DNA. I’m really sorry about this.
Brittany: Really? Are you serious?
Dr. Buehner: I’m sorry... yes, it’s positive. Do you want to also know the baby’s gender?
-- at this time, I’m thinking to myself that we already know... but apparently I can make a 1 in 1500 statistic, I’m sure I could make the statistic that they were originally wrong about my baby’s gender too.--
Brittany: Yeah, well, sure.
Dr. Buehner: It is a girl.
Brittany: Well that’s good because we planned on that.
Dr. Buehner: Are you alright?
--I’m guessing he was expecting me to be in tears by now, and for some reason I was able to maintain a real genuine calmness.--
Brittany: Well, I don’t know that I’m alright. This kind of sucks, y’know... but, it’s just a new world.
Dr. Buehner: Yes... I’m really sorry. Do you have a pediatrician already picked out?
Brittany: It’s okay. You didn’t do this. It’s no one’s fault. And yes and no. Being with the military we usually are just assigned a pediatrician here on base, but given the circumstances I’m sure that if she needs a specialist or specialists then they’ll allow us that off base. I’m not sure how that’s all going to work out.
Dr. Buehner: I will have some information for you then when you see me next. Your next appointment is on the 22nd with the Maternity Specialists though, correct?
Brittany: Yeah. I see you on the 29th.
Dr. Buehner: Okay, yeah. I will get a bunch of information for you together. We’re going to make you an appointment with a pediatric cardiologist as well so as to better determine what to do for the baby once she arrives or if her heart condition is compatible with life. Do either you or your husband have any experience with being around or raising a baby with Down syndrome?
Brittany: Uhh absolutely not. We are both entirely clueless. This is going to be extremely new for the both of us.
Dr. Buehner: Then I’ll have more information regarding that as well when you see the specialists on Tuesday. They’ll be able to help you out there as well. The last baby I delivered with Down syndrome, her mother is a nurse here and she is involved in a local group. .... --at this time, I remember zoning out and staring at the edge of my laptop. I don’t remember the names of groups. Different words swooshed in and out of absorbency, but I don’t quite remember. I think, given his next line, he realized I was overwhelmed and slightly in shock-- But we will have all that ready for you too when you come here. Are you sure you’re okay? I’m really very sorry for the both of you. Babies with Down syndrome, and children, are usually the sweetest, generous and kindest people you’ll ever meet. They still play and interact very well, and there’s many things you can do to get involved with your baby and help her develop at a somewhat normal rate.
Brittany: Really, it’s okay. It’ll be a learning process for sure. I’m sure by the time I see you I’ll have fifty-million questions after nights on the internet researching, and days reading books.
Dr. Buehner: That’s fine.
Dr. Buehner: Now your cramping... is it continuous throughout the day? Do you get them every hour? Is there any bleeding along with it?
Brittany: I don’t know if it’s hourly, I’d say I cramp about 5-6 times a day though. They don’t progressively get worse, and they happen whether I’m sitting, standing or actively moving around. I haven’t seen any blood at all, so no.
Dr. Buehner: Okay well then I’d consider that fairly normal. Now if you see they do become hourly, or they intensify in pain with or without bleeding, call the office or if after hours go straight to the E.R.
Brittany: Okay, I will.
Dr. Buehner: Again, I’m really sorry. We’ll see you two soon.

Of course straight after we hung up I went into mad tears. There’s a long range of emotions I can’t even begin to explain and I don’t think it’s possible to empathize until you have had a child or even conceived one. It was news I was prepared to hear because, in truth, something inside me told me all was not well with Bella. No matter what anybody said, or what good wishes were tithed, in my heart of hearts I knew Bella was not okay. Ironic enough I was depressed just the day prior to the phone call... almost as if my intuition knew. Mother’s intuition kicking in early? Maybe.

Immediately I text messaged my mother, father and Miles with, “Dr. Buehner called. It’s not good news.” I didn’t know who was in any position to hear the news, so I let them decide by calling me back or texting back. My dad was in the middle of a store (he evaluates them for his job), so he wasn’t able to hear until later. My mother, of course, called me straight away. Miles called me in the middle of my phone call with my mom. That was probably good because when my mom called I answered (knowing that if I didn’t, she’d think I jumped off a cliff) and I was sobbing too hard to speak coherently. By the time I’d gotten it out, I stopped weeping so terribly and then Miles called so I was able to tell him just through a leaky nose and broken heart.

Miles didn’t ask to come home. He already knows I’d say something along the lines of, “That’s not going to change anything. You can stay at work.” When he hung up though, he told his co-workers and at their persistent encouragement and his superintendent’s insistence, Miles came home at 2.30.

I don’t know if I want someone near me or not when I am upset, but when I saw him come through the front door I was so happy. I kind of wish he had wanted to come home and had planned on it anyway, but I will take it that his co-workers (who usually back stab him) encouraged and insisted he go home to be with me.

When he sat down on the love seat, I think he half expected me to go ballistic. Yes it’d been obvious I had been crying and upset, but when he came home I felt okay. I felt supported just because he was physically here. He admitted he was afraid for my well-being; that he expected (and maybe still does) for me to lose it and breakdown. Even if I did breakdown, there’s nothing I would do to harm myself or the baby. I’m by no means one who would cut themselves. I’m not going to go drink (though admittedly I could REALLY do with some wine at the very least; tequila preferably). I’m not going to smoke. I’ve never done drugs (that bout of pot-smoking doesn’t really count since it wasn’t for the joy of drug usage). I’m not going to jump off a cliff or get in a car wreck. So I’m not quite sure what Miles and my mom expect from me, lol... but they expect me to go insane.

There’s times I cry. It comes when I feel fine, and am walking about with hope. Most of the time it comes without thought or any sort of visual provocation. Yes I can tear up at the sight of a healthy child an a mother who is wheeling them around unaware that they’re extremely lucky. Yes I can tear up watching a YouTube video of a proud mom who taught her DS 2-year-old 50 American Sign Language signs -- and that’s his only form of communication. There’s no doubt to visual provocations that make me tear up... that’s expected. I don’t expect the random tears when I’m driving and have NO thoughts in my head. Or like this morning when I woke up and just cuddled with the cats and Miles and felt tears I didn’t know were there roll down my cheeks. It’s like crying without actually crying...

About an hour after he came home he called his mom. I’d already told him that other than my mom, I couldn’t yet handle letting people know. As soon as I think about saying it out loud, then I go into sobs. His mother was in the middle of a piano lesson with a student, and I feel bad because I hadn’t even thought of it. She was noticeably shaken, Miles said, and I feel bad that we left her to fend with this emotional news in the midst of her typical Thursday afternoon of lessons. We promised to have a chat later when Jim, Miles’ dad, came home.

Miles and I took off. We went and got a Starbucks (indulgence #1), looked at Who’s Lobby for possible Warhammer gear that’s due out (indulgence #2) and then to Borders to see if they had any Down syndrome books for me to read (indulgence #3). At Borders Miles received a call from Russell, his superintendent, saying that they were working on getting him out of his PCS (aka “move”) and deployment.

(BACKSTORY: When Miles told Russell, Russell had him close his office door and sat down with him. He then asked Miles if we were at all spiritual or religious and Miles answered affirmatively. Russell then proceeded to talk with Miles, ask if I was alright, said he’d keep all of us in his own prayers, and told him to immediately leave and not worry about finishing for the day. He asked if we desired to stay in South Dakota or move to England. Miles admitted we’re not nuts about South Dakota, but moving to England so far away from family and potentially away from medical facilities able to supplement our special needs child would be stressful. If we don’t move to England -- Miles doesn’t deploy [well, deploy in April... but he’ll have to deploy sometime of course]. Russell wanted to make sure of this so that he could begin the process for Miles since it’s gotta be signed off by the big wigs of OSI.)

I think he mainly was calling to just update Miles and make sure we were both okay. Miles assured him we were okay (given the circumstances) and were just trying to research and decompress. Shortly after that phone call, Cynthia called back (his mother) but Miles let her know we were in Borders (he didn’t really want to sit and discuss this in public) and I’m sure she understood that was for me. Most everyone knows Borders (or, a substantial bookstore rather) is where I go to if I need to decompress. He let her know we’d call her back when we got home.

Feeling slightly rushed, and slightly pathetic, I urged him for us to just get going. He wasn’t too happy about being there, but I saw he wanted to let me do what I wanted. We looked all over for anything on babies with Down syndrome and they had nothing. Just a bunch of books on autism, ADD/ADHD, misbehavior and nutritional guides.

Once we got home he called his parents. They’re, of course, very sorry for us and while he was on the phone with them (I think I can only muster to really discuss this with Miles, as I do begin to cry when I even talk to my mom - hence my asking him to talk to people on our behalf) I was online researching what books were available and then, of course, the syndrome itself.

I’m shocked to see so little information via books out there. I think the latest one I saw was published (or maybe it was reprinted then) in 1999. The book I’m ordering (Borders and the used bookstore didn’t carry it) is called Babies with Down syndrome: A New Parents Guide and is raved about by other parents who were in my position before. Haha, then again, there’s no other new-parent-guide-to-having-a-baby-with-D
own-syndrome book to compare it with.

I’ve researched a bunch. Like... a TON. I have so many questions. For the doctor. For myself. For God (not in a negative way). For Miles. For our families. For our friends.

Since I’m 22, the statistical chance of me ever having a baby with Down syndrome is 1 in 1500. Astronomical at my age in other words. It is not caused by anything either... it happens straight at conception... so.... yeah. I don’t understand a lot. I took prenatal vitamins BEFORE I was pregnant. I made Miles take a multi-vitamin for me. We both began to work-out prior to conception. We drank in moderation (though we never were hard drinkers on a regular basis). Granted, we did smoke. But research insists there aren’t environmental factors that affect the possibilities. In any case, since we already have one child with Down syndrome we’re going to have to get genetic counseling for all future pregnancies. Before we attempt conceiving again, I want us both tested... because it might change our minds. If one of us is a carrier and it wasn’t just a chance event (which most cases are chance), then we’ll have to discuss if we want to risk that again. We both want more children, and preferably (am I bad for saying this?...) children without chromosomal abnormalities.

I want to know what kind of Down syndrome she has. Is it the normal trisomy 21? Is it mosaicism (I would prefer this, but it’s very rare)? Is it translocation? Should we consider banking her cord blood since DS children are prone to leukemia in the first years? Since there’s research showing DS children becoming phenomenally normal (almost DS free) with stem cell therapy?

Since it’s nearly official that we’re not moving to England, and he’s not deploying, we’re going to move off base and get our own house. I’m not sure when that’ll take place - before or after baby - but we need to get our own place without the stress of attached neighbors, the base watching how often we water or mow our grass, and we need more rooms now. We will have family staying more with us and we will need one more bedroom. I’m glad Miles decided this already too!

Mom and dad said they’d help us sell my Mini since no one is showing interest and winter is fast approaching for South Dakota. Being in Florida, and particularly a wealthier part of Jacksonville (where all the kids are spoiled), they’re more likely to get a sale out of it. What they’d do is buy it from us and use the money they get as “pay off”. That way we can get our Honda Civic and get ready for baby Bella without the hassle of car payments.

How is Miles? I’m not sure, to be honest. He wants to be a rock for me so he won’t show too much emotion. His emotion is only decipherable by what words he chooses to say. I know he’s upset. I know he’s disappointed. I’m going to wager he feels the same things I do. We both feel blessed nonetheless. We both feel that God gave us this baby for a reason and that it’s very much a part of His plan. I think he wants to cry, and I wish he would. Whether it’s in front of me or not, I think he needs to let it out because I feel better when I do -- lol. He’s being a good husband though. He put the dishes away yesterday and made dinner. He humored me by taking me to Borders. He came home. He’s keeping in touch. He’s (this one is important to me) letting me tell him a million facts about Down syndrome and asking a million more questions. I’m glad he has patience with me, because when news like this comes... I have about every question you could ever think of.

So this was God’s plan all along. Those dreams I had at 6 of being a mom... always knowing and planning my future careers around the fact that I wanted to be married with kids (plural, yes... kids)... He knew He’d give my future husband, Miles, and I a baby with Down syndrome. There’s something to it, I know this... and I feel it... and I just want to know what her purpose is in this world because obviously she very much has one. I’m curious how this will all play out.

Even though I’m not devastated (don’t get me wrong, I’m terribly confused... sometimes angry... very sad for Bella’s future) I can’t sleep. I barely slept a wink last night and thus am entirely exhausted today. My last wisdom tooth also decided to begin coming in, so my mouth is also in pain, lol. Not to mention since I wasn’t sleeping, I could feel the cramps last night. I think Bella knew mama was upset because she kicked a LOT.

My poor baby Bella...

1 comment:

dani said...

i, too, have no doubt that our great Savior has a very special plan for your sweet bella.

i am looking forward to hearing of her arrival! i will be keeping you, miles, and bella in my daily prayers.

thank you for stopping by my blog! i look forward to keeping up with yours.