Reality

I've been trying to figure out what to write.  The reality of the situation is that I have been so overwhelmed with emotions lately that when I try to type, my mind goes blank.

I went to the Mall of America today with my mother and my three nephews so they could go to Nickelodeon Universe.  I wandered around the mini theme park all afternoon.  They were so many kids and kids of all ages.  Since we received our baby girl's diagnosis, I literally think about her every minute of every day no matter what I am doing, or where I am.  Today was no different.  And as I sat on the benches and watched kids and parents go by, all I could do was wonder.  Wonder if my baby would ever want to go to a place like this.  I wondered if she'd love rides like I always did.  I watched my nephews negotiate the ride lines independently and wondered if she would ever be able to do that.  I watched the tiny little kiddos hobble around by themselves and wondered how old my baby girl would be before she learned to walk.  I felt really sad.

I did some shopping by myself at the mall.  And as I walked through the mall I looked at every person I passed.  If they had children in strollers, I tried to catch a glimpse.  There were SO many children at the mall today.  And even though I had thought I must have seen a thousand kids today, I did not see one child or person with special needs.  I did not see one girl or boy with down syndrome.  I was again feeling sad.  Sadness was my theme today, I guess.  I grabbed a soda at one of the little food stands in the mall and went back to Nickelodeon Universe to meet up with my mom, who was waiting for my nephews that were on a ride.  I sat down, feeling all sad, I guess feeling sorry for myself or something similar, who knows.  I said to my mom, "You know, I have seen about a thousand kids today and I have not seen one child with special needs.  Not a one!"  My mom responded that she had seen a couple over the course of the day.

I started to get a little teary-eyed, thinking about how different my baby girl would be, when literally less than one minute after my comment an entire group of young adults with special needs walked by us.  They were all wearing yellow t-shirts that said "friendship club".  There must have been 15 people in that group.  We just sat there, kind of dumb-founded.  I started to feel more tears coming when a young boy and his mother walked by us.  She was pushing him in a pretty high-tech wheel chair and the young boy looked to have significant physical impairment.  I just looked at my mom and said, "well I guess someone is trying to give me a sign!"  My baby girl will not be isolated or alone or different in a place like that, nor will she be anywhere else.  I just have to keep telling myself that over and over, whenever I am watching other children laugh and play.

I will admit, tonight is a rough night.  Joe is in Chicago and I am home alone with my puppies.  It's starting to get dark outside and I can feel a constant hotness behind my eyes like a storm brewing.  It could start raining at any time.  And it could storm.  It could be bad.  Or maybe those clouds will keep rumbling by in the distance and a drop of rain will never fall.  Well, I guess I can't say that because I've already spent time tonight crying.  When I got home, I got the mail.  There was a letter in it from my perinatal physicians group.  It ended up being a copy of what they had sent my original ob.  It was a letter explaining to him that Joe and I had been in and following our quad screen results and ultrasound that showed baby girl's heart defect, we opted to do an amniocentesis.  It then went over the amnio results in detail and thankfully included an extra sheet with the actual laboratory report.  How scientific.  How nice of them to send me this reminder weeks later so that I can sit at my dining room table alone and cry over it.  It's not like it was new information, but it was just a blatent reminder.  Staring at that lab report, I was reminded again how surreal this whole experience is.  I kind of feel like I am living in the twilight zone or a bad dream. 

Some weird part of me still believes that when baby girl is born, she will be completely healthy and without any chromosomal differences.  Of course I know that that is not true, but I still have trouble believing this is all really happening.  I was driving home tonight and a song that I have always loved came on the radio.  The song is about heartbreak in a relationship, but one lyric rang so true.  "They say bad things happen for a reason...but no wise words gonna stop the bleeding".  I have heard a lot lately, "everything happens for a reason".  That lyric recognizes that saying but also says "yeah, I get it, but that doesn't make the pain go away". 

I didn't want this blog post to be negative because most of the time I don't feel so negative about this situation.  I feel peaceful and happy and excited to hold my baby girl in my arms.  But I guess you can't be perfect all the time, right?  I think this is why I titled this post "reality" because reality is that you can't be strong and happy all the time.  I just thank God every day that I have the support of my friends, family and most importantly my husband Joe. 

Speaking of songs and lyrics.  Here is a song from one of my favorite artists, Rob Thomas, that really speaks to the emotions of this evening. 

Song #1: Ever the Same.


Like I said before, I didn't want this blog post to be so darn negative or sad.  I actually had a whole post typed out yesterday but when I got home tonight to finish it, I didn't feel like that spoke to where I was tonight (which obviously was negative and sad)...  Like I said before, I am feeling really overwhelmed lately and I have a hard time getting out words that when put together in a cohesive sentence, really make sense.  I reread through what I wrote yesterday.  I was going to cut parts out, but what the hell.  It is what it is and it speaks to more emotions and thoughts I am experiencing now.  It also includes a little bit of an actual update, which was my original intention for this blog...unfortunately (or fortunately) this has become a little more of a journal. 
Here is what I had written previously:

Anticipation

I was planning on writing an update post after our most recent doctor's appointment. That was on Monday afternoon. Talk about anticipation. I was told that we were going to have an ultrasound and I have been waiting ever since our cardiologist appointment last week to see our baby girl again. Apparently there was some miscommunication between all the cooks in our proverbial prenatal kitchen and now there was not going to be an ultrasound. I was frustrated. I remember the instant disappointment I felt when they told me there would be no ultrasound. I also remember how annoyed I felt as I went through my "transition of care" appointment and had to go back through all the questionnaires that I had went through with my ob at my very first prenatal appointment. The nurse told me about what I couldn't eat and medications I could and couldn't take...just like at my first prenatal appointment. I even got yet another book about pregnancy and childbirth and the first year. I feel guilty admitting it, but I was angry. I wanted to yell at them. Why did I even have to go to this stupid appointment? Don't you have all of my previous charts and medical information and family history? I'm almost 22 weeks, I would hope by now someone would have told me the things I am not supposed to eat or medications I am not supposed to have. What a complete waste of time. And those "what to expect" pregnancy books are just insulting at this point. It's not that I know everything about being pregnant. I obviously don't, this is my first pregnancy and I'm only halfway through. I guess I just feel a total disconnect with "normal pregnancy" and at that, a total disconnect from other people's pregnancies as well.

Pregnancy is like an exclusive club of which I have always wanted to be a member. I remember the past couple years that we were dealing with infertility. Talk about anticipation. I remember doing the pregnancy test then setting it across the room so I didn't stare at it. I would try to keep myself busy while it was running then I would slowly approach it. Sometimes I would try to catch a glance from far away and watch it as I walked up to it, hoping to see that second line. Othertimes I would cover it up until it was ready then close my eyes, uncover the test and say to myself "please God let this be positive", then open my eyes. Sometimes I would take the test then stare at it the whole time as it ran, repeating over and over to myself "please let this be positive". They never were. I wasted a lot of money on pregnancy tests. People thought I was crazy. "You'd be crazy too" I thought. Sometimes I would hold that test up to the light, hoping that there were two lines there, I just couldn't see them yet. I am even guilty of taking the tests apart to get a closer look. I guess that sounds desperate. I was desperate. I remember how pissed I would get when people complained about being pregnant. It actually hurt. I thought, "I'd do anything to be in your shoes". I know, crazy. I have been anticipating that positive pregnancy test for so long. I just wanted to be part of that exclusive club. I've always just wanted to be a mommy. I remember how I felt each and every time someone told me they were pregnant. I wanted so badly to be happy for them, but all I could feel was sadness.
  
Ask anyone that has had trouble getting pregnant and they will tell you how stressful it can be. There were times that I thought I would never get pregnant. I would never get to be a mom. There were also times I thought if one more person tells me, "once you stop worrying about it, it will happen" I was going to scream. I know they meant well, but I'm confident that I speak for pretty much everyone dealing with infertility in recommending that people not say that.


The morning I found out I was pregnant, I had decided to take the pregnancy test on a whim. I didn't have a good reason to do it, I had kind of taken the month off from the baby game in preparation for starting full-fledged, shot-in-the-butt-everyday, fertility treatment that was to start with my next cycle. I didn't use any of my test-taking tactics that morning. In fact, I really don't know why I took it, I was just anxious to get started with the treatments I guess and I always had pregnancy tests lying around. I used to joke that I took them for fun. Humor helps in situations where you feel hopeless. Anyways, there was no anticipation that morning. I think I took the test out of boredom, who knows....but I remember the moment I saw that positive test. There in front of me were two pink lines. The second line was a little faint, but it was most definitely there. I didn't need to hold the test up to the light or take it apart to see it. I think I stood there with my mouth open for awhile, rubbed my eyes, held up the test...then I just started crying. Crying may have been an understatement because I was pretty much sobbing at that point. I was shocked. I was absolutely thrilled, I have never felt so happy. I was in disbelief. It was like I was dreaming.

I thought I was finally a member of that exclusive mommy club. The one thing I had dreamed of my whole life was finally here. This was actually happening. I felt like I needed to pinch myself. And when we received our baby girl's diagnosis, I felt similar emotions: I was in disbelief, I was shocked, I couldn't believe this was really happening. The only difference was in the dream: it felt like a bad dream...in fact, initially it felt like a nightmare. I felt like I was kicked out of my exclusive club and into a different, even more exclusive club, but this was a club in which I did not want to be a member.

After our appointment on Monday, I realized the irony of it all. I had been through a similar appointment before when I first found out I was pregnant and going through it all again made it feel like we were starting over...which I guess we kind of are. When we received our daughter's diagnosis, I felt like I had lost my baby girl. In my mind, the baby I was dreaming of and planning for was gone. I couldn't see her in my mind any longer. I couldn't see her sweet face or her blonde pigtails. I couldn't hear her giggle. After receiving the diagnosis, I couldn't bring myself to look at her ultrasound pictures I had been carrying around with me for so long. I even had up-to-date pictures I had gotten the day of the diagnosis, but I couldn't show them to anyone. I felt disconnected to this child I could feel moving in my belly.

What I loved about our appointment Monday was that less than 3 weeks after diagnosis, we were feeling anticipation again. We had been told we would have an ultrasound and we were anxiously awaiting the chance to see our baby girl again. We couldn't wait to have pictures to carry around and show off again. That is why I was so disappointed when they told me there was some confusion and that I wouldn't be getting an ultrasound that day. So even though I was mad at the doctor and frustrated with the process, the end result was a realization of how far we have come and that brought me so much joy and continued peace with her diagnosis.

In my mind, I can see my baby girl again. She doesn't look the same anymore, but I can still see her sweet little face and her precious smile. I can imagine her running around and laughing, playing with the puppies, even being sassy to her mommy. So I guess maybe we are starting over, almost 22 weeks along, but so it goes. If there is one thing I have learned its that you just never know what the next day will bring and all you can do is try to find the joy in every day.

At the end of our appointment, we did end up getting to see our baby girl. I think the doctor just did the super quick ultrasound because he could tell how disappointed I was. We only got to see her for a couple of minutes, but it was amazing. She is getting so big! She was moving a ton, of course, and kicking and turning and stretching. The doctor had a hard time getting a good picture because with all of her movement, they always turned out blurry. Always giving the docs a hard time, that's my girl! :)  Overall baby is growing strong.  I feel her moving and kicking all the time even though she is only about one pound right now and about 8 inches long.  So tiny, yet so active and strong.  That's my girl!  We will have an ultrasound in 3 weeks at the perinatologist where they will measure her and actually take a complete look at her again.  We have also scheduled one of those fancy 3D/4D ultrasounds in mid July at an ultrasound studio where we will really get a good look at the little cutie pie and we get to bring some family and friends as well.  We look forward to being able to share that time with them and help them feel connected to our baby girl, acknowledging that we are not the only ones that may be struggling with this diagnosis and needing to feel a new connection. 

So the anticipation builds once again.  Funny, once I got to the end of this blog post, I am starting to feel better.  Maybe this evening's storm has passed.  Thinking positive about our future and letting go of hopeless feelings helps.  I can't wait to see our baby girl again.  As I am finishing up this post, baby girl seems to be dancing in there because I can feel her moving like crazy.  It makes me smile, something I need to remember to do more often.  I know once she is here, she will bring me more smiles and joy and hopeful feelings than anything else. 

A more hopeful song to end with :)