Wednesday, February 29, 2012

Weekend Update

Yes, I realize it's Tuesday, but, hey, what are ya gonna do? :)

The weekend was actually pretty good, overall. I did have a 'moment' (that's what Jarrod and I have been calling my 'sad times'). I have a hard time holding myslef together when I have to be alone for many hours at a time. Which, thankfully, is rare. When I am alone and idle, my mind wanders. On Saturday, Colt went down for a nap and I decided to watch the movie, The Notebook. (Big mistake, it's very sad at the end, But it's not about babies, so I thought I would be okay... WRONG!) Colt woke up before the movie was over and was being very cuddly, so he was sitting with me on my lap with his head on my shoulder. I began to tear up a little bit, at the sad part (you know, when she 'comes back' to him at the end, don't act like you don't tear up too! Come on!) and I kinda turned my head quickly to look at Colt for some reason. Well, he started with this belly laugh. He looked back at me and smiled with that big green paci in his mouth and just laughed hard! (In hind sight it was the cutest thing!). Then I looked back at the TV and then turned fast toward him again, and he belly laughed again, through that silly paci. :) It really was TOO CUTE!

That's when I started thinking.... I'm never going to see Colt's brother or sister laugh through his/her paci like that. I'm never going to see a toothless smile turn into a toothful smile where the teeth kinda turn up a little bit to make room for the paci (I know teeth people, I know it's bad for his paci to be effecting the way his teeth sit, I'll invest in braces, okay?). I just started to get really sad. That stinks. I really hate thinking about all the things I'm going to miss.

So... I thought about my team. I knew it was time to call on them! I needed a babysitter...... for me.

For those of you who don't know, I have built myself a "team." In the early days there were few people that supported us 100%. (And please don't take this opportunity to criticize those people. They think what they think, and that's fine. I would rather them be honest with me, than make something up just to help me feel better. I try to be real with people & I want them to be real with me. Don't be all mad because not every single person supported me, I'm not.) I know that people love us and that they care about us and pray for us, but I just didn't feel supported from everyone. (And in those days that was VERY important, because we had a huge decision on our plates) And I know that everyone has their own opinions about what they THINK they would do. But I had my own opinions about what I thought I would do, too, and that all changed the moment the term "anencephaly" became a part of my daily vocabulary. SO.... I decided that I needed to surround myself with people that I knew loved us, supported us, and would back us, on ANY decision we made, and I created for myself "a team." My team has somewhat grown now that we've made the decision that everyone thought we should've made and that everyone thought they would've made, but there are still those eight people that I turn to when I'm really down. And don't get me wrong... I'm THANKFUL that we made the decision that we did, especially now that I'm feeling movement and things, it's all that much more precious! But those eight people were there for me totally and completely from the beginning, and I know that I can trust them, all eight of them, with my whole, complete heart. Every sadness, every anger, every bittersweet moment, I know that they will lift me up when I don't feel like I can. I know that because they already did, each in their own individual way!  (Sorry... all that was a little side note. The reason for the side note is to maybe help someone else that might have to go through this same thing one day... Surround yourself with people you love and trust and support you. Tell them, "you're on my team" ... tell them, "it's your job to check on me if you think I'm being too quiet, or having a tough time. It's your job to distribute information to church or other social circles, if I can't" It has helped me TREMENDOUSLY!!!)

Anyways.... Sorry... lol

Saturday I called my wonderful sister Kelly. It was her turn. :) And bless her heart, she dropped everything she was doing to meet me at Skyline for lunch! (I pray she gets a huge blessing for that someday!) I knew I needed to find someone to be with so that I didn't have to be alone anymore. I'm so thankful that I have people that will do that for me! And I know that there are many more than eight! :) It makes me want to have more compassion towards people myself, because I don't know that I've ever been able to do that for anyone before.

That was the only time during my weekend that I had 'a moment', although Sunday morning I got close. Sharon sang a song (songs get me, have you noticed? lol) that talked about God being Holy, Magnificent, & Wonderful. I thought to myself while I was fighting off the tears, "That is so true! He is Magnificent & Wonderful, even somehow in the midst of anencephaly... Crazy, huh?"

Thank you for all of your prayers & thoughts, cards & facebook messages. They have all meant so very much! I love you all and I pray that God will work through this situation to bring me, and hopefully others, closer to Him in some way! To Him be ALL the glory!!!!


Wednesday, February 22, 2012

Car Ride Conversations

A car ride... The best place for a good conversation. Why? Because the person you are riding with has no choice but to listen. And, since you are probably driving, they won't be able to cause you any bodily harm if they don't like what you have to say. This is the joy in a car ride conversation.

But the person I'm talking to in my car rides cannot talk back, and never will in this lifetime. He (we do not know for sure yet if it's a boy, but that's our guess) does not know what I'm saying, but I know that he knows the love I am conveying to him.

I have decided to talk to my little precious one when I'm in the car alone. We had our first conversation yesterday. He initiated the conversation when we were driving down 68 towards Georgetown going up the hill right after Stony Hollow Rd. He was kicking me over and over again with all his might! It was like Colt standing in front of me crying, reaching his arms up at me, opening and closing his little fists saying, "Pay attention to me! Pay attention to me!!" So I gave LittleMcGinnis2 my attention. :)

He had been kicking me all day and I finally decided to talk to him, like I had done so many times with Colt. But this time was a little different. Instead of me telling him to quit kicking me so much (like I had always said to Colt). This time, I wanted him to know that I loved him, and I appreciated him kicking hard enough to let me know he was there, and he didn't have to stop unless he was tired and wanted to rest. I wanted him to know how much I loved feeling the "signs of life" inside of me all day! What a huge blessing! Yesterday was kick-mania, and I loved every second of it! If only I could learn 'in-utero Morse code' I would be set. But that's not going to happen, so I just make up what his kicks mean to me. :)

For anyone with any information on 'in-utero Morse code' please contact me immediately! :)

Tuesday, February 21, 2012

The Weekend of Valleys

My weekend was a little bit crazy. I went through a lot of emotions for some reason. I have been doing really well, not having many valleys, but this weekend was a 'doozie' (for lack of a better term).

It was President's Weekend and I worked five days last week (Whew! I forgot how tiring that was! I don't know how all you people out there do it!). So, I think I was super tired from that anyway, which added to my 'valley.' But on top of that I was overly irritated with things that wouldn't normally bother me enough to effect me on such a serious level (but I suppose I should be expecting more and more of that as time goes on, huh?). 

Facebook is probably the number one offender, I'm contemplating getting rid of the stupid thing all together. But then again, I think, how would I snoop on everyone? (Aww!! Come on!! Don't act like you don't do it too when you're sitting around bored and there's nothing on TV!) :) I kept seeing all throughout Facebook young mothers whining and complaining about their pregnancies & newborns. I'm sorry, I can't handle it. There is NOTHING I wouldn't do to have a beautiful little carbon copy of my Colt, a healthy, happy, crying, throwing up everywhere, lovely, wonderful baby. But when people start whining about their stupid sciatic nerve, or heartburn, or being annoyed by the KICKS IN THEIR RIBS??!! (seriously, come on).... I just internally scream. And... even MORE annoying, people that complain about their baby not sleeping, or eating too often, or WHATEVER... PLEASE!!!!! Realize... Your... Blessings!!!! (I'm going to get off this soapbox soon, I promise) But there are so many of us out there that are going to lose a baby, have lost a baby, or has a very sick baby that they may lose, or are going to lose, that would LOVE... Possibly even KILL, to have your problems. So there came a point in time when I just couldn't handle it anymore and I couldn't stay silent... so, like we all do, I posted on Facebook (sorry). It may have been a little insensitive, rude, and maybe even mean, but at that point I didn't care. And I'm still not sure that I do because I think it's a valid argument from my perspective. God gave you that perfect, not sleeping, spitting up and staining your carpet, eating too often baby for a reason and I want you to be thankful for that.

Okay... I'm getting down off my soapbox now, hopefully that's all out of my system and I remember that they are tired mommy's that are just plain exhausted (I know how that feels too) and they are using Facebook to air their frustrations rather than taking it out on their babies, just like I'm sure I did. I'm going to try to not let that bother me as much in the future. (Going to try... No promises)

Then came the weekend, Friday was busy with a 31 party, then Saturday I ran some errands for Jarrod & spent the rest of the day at my mom's, then came Sunday. Now, my husband usually doesn't have to work Sundays, but this was one of those that he did. So, like I always do when he has to work, Colt & I went on to church. I was so thankful that Kathy Rankin sat with me in church that morning (although I had Colt with me in the service at the time, so, I kinda tricked her without her knowing it ;) LOVE YOU KATHY!!).  A beautiful song was sung as special music that hit me so hard, and I totally wasn't expecting it. She sang about (paraphrased of course) "your deepest valleys and your darkest darks and your saddest sorrows aren't bigger than the Grace of Jesus." It was a beautiful song, but I will admit, while she was singing (in the midst of my crying... like, the ugly cry where your forehead is all wrinkled and your lips are all quivering, you know,  yeah....) I am guilty of thinking, although I truly know it's untrue and illogical, "God, this is a pretty deep valley, it's a pretty dark dark, how could ANYONE get through this, or deal with this, because as you can see God, I'm struggling right now." I knew those feelings were silly and totally wrong, but I couldn't help but think about them for a second. Then I started to think about Colt for some reason. (This is all during the song mind you) I started to think about him cutting these teeth and how I would never have that with this baby, or see him/her roll over, or walk, or babble, or tug at my hair like Colt does when he's sleepy. I don't know, my mind just started flooding with all these thoughts, and that just plunged me farther and farther into my saddness. Thank God for Kathy. At this point, I am a crying mess and about half way through the song she puts her hand on my shoulder. Just what I needed!! I needed to know that someone was there. She knew I was hurting and she knew I needed her and she was there for me in the most perfect way she could, just by a hand on my shoulder. I was so so thankful for that! Then, our dear Susan Haslam handed me some tissues and, thankfully, the music was over. I loved the song, but was glad it came to an end so that I could maybe try to get a hold on myself. Well, that never happened. I was a mess the whole rest of the service and on into Sunday School. Jarrod wasn't there to keep me strong, so I just fell apart and couldn't put myself back together again (I'll be honest, I thought of Humpty Dumpty a couple times that day, lol).

After church I decided that being alone was a bad idea, so I went to have lunch with Jarrod (which was wonderful), then I went to hang out at my mom's again. I love being there because it is such an open, loving, accepting environment. I am blessed with probably THE best parents ever! Seriously.

Then came Monday and I still decided that maybe being alone wasn't the wisest thing I could ever do, so Colt and I crashed Kathy's house (sorry Matt, lol). It was wonderful. Just being able to spend the day with Kathy talking about whatever either one of us thought of at the time was great! :)

As I was at Kathy's, my doctor called.  I hadn't heard from her all week because she was on vacation. She told me that she spoke with 'Amy' at the LifeCenter (the place that they organize organ donations I guess) and that the director had been contacted about our situation. She said that it was a "Hot Topic" (the issue of anencephalic organ donation, that is). I have no idea why, but I hope, through lots of prayer and possibly persuasion on my part, they will give us an exception. I want to do this so badly! I have never swayed from that desire, not once. I just hope that we can jump through whatever ethical hoops there are to get us to our desired outcome, a gift of life to some other baby in need.

Well, I'm happy and thankful to say that I have come out of my weekend of valleys and as I sit here writing this, I'm feeling good. I'm expecting to hear from Dr. Von Hoene later today about what the director at the LifeCenter says, so I'm looking forward to some good news! I'm also thankful that my doctor will not take no for an answer! :) She's a fighter! I'm so thankful to have her on 'my team'!

Thank you for reading, I hope that your day is blessed in more ways than you can imagine! I know mine still are! :)

Wednesday, February 15, 2012

The beginning of my blogging journey.

Well, if you are reading this, I hope that you are well, happy, and healthy! I am starting this blog as a sort of online diary for myself and others that may have to travel down the 'not-very-well-known' path of anencephaly. I am not a woman of fancy words or lingo, nor am I an accomplished author. This is just me, in my own words, in my own way. Take it or leave it, but hopefully take it. :)

We first learned of the term Anencephaly about two weeks ago (two weeks ago yesterday actually). Talk about heart-shattering! I was going in for a normal ultrasound, and all was normal until the tech told us that she was going to talk to the doctor because he would have some concerns. That's when I knew this pregnancy (unlike my first) was going to be everything but normal and boring.

My first pregnancy with my son, Colt, was BORRRING!! What I wouldn't give to have that again! We went for all of our normal doctors appointments, did all the normal tests, opted out for anything additional, had a normal vaginal delivery with an epidural, and everything was GREAT! I loved every second of that, except maybe the heartburn. :) I just wanted this one to be exactly the same... Well, it wasn't meant to be.

After the tech went to get the doctor, he came in and began to explain to us what was wrong. I was devastated, as was my husband. We were looking forward to having two kids (hopefully boys) being so close in age, since Colt is only 13 months right now, but that was not meant to be either.  We then proceeded to see the genetic counselor, who pretty much restated exactly what the doctor had said. She gave us a book that would help us with the decision we were going to have to make: Carry to term? or Interrupt the Pregnancy? What a horrible 'decision' for a father and mother to have to make about their precious baby, but we had to do it.

We thought the doctor told us during the ultrasound that it could be more dangerous for me to carry this baby, so we were really contemplating all of our options, as neither of us were willing to risk my life. (If you are agnozing over your decision right now, please email me, I know how you feel!) We found out about the condition on Tuesday, and we didn't have an appointment to meet with our doctor until Monday. That week was the most agonizing week of waiting ever!

Finally Monday rolled around and we got to speak to our favorite doctor. (I go to a clinic, so I usually don't see the same doctor twice, but they made an exception for me this time) She was so kind and considerate and she was very straight-forward with her answers to our questions. I love her! I am so sad that she will be finishing her residency before my due date! But with her help, guidance, and knowledge, we decided we would carry our baby for as long as possible. The main reason for this was not for myself, or my own desires to hold my baby (although I am thrilled that that will be a by-product!), but we really want to be able to donate this baby's organs to a baby in need. I know that donation of anencephalic organs is rare, but I also know that it has been done. This is hope enough for me that we can do it too!

It is now a week later and I have gone through some ups and downs along this journey (today I am currently in a valley, which is why I think I decided to start this blog). I have had people say things to me, with the best intentions at heart, that have simply cut me to the core, and I have had people be more encouraging without saying a thing but just giving me a hug. I have had people accuse me of seeking attention throughout this whole thing (true story), and I have had people support me and lift me up when I thought that I could not go on any more. It is awkward being on this side of grief. People don't really know what to say to you, and you don't really know what to say to them. But it's okay, that's how things happen sometimes.

I hope that this blog, as a whole, will be an uplifting and encouraging place for me to tell my story. (I have an actual journal too where I will try to keep my frustrations so that I don't have to blurt them out here to the whole world, lol) I hope that while I am lifted up by getting my story out there, you will be lifted up by hearing it. If you have any questions about our journey, or about anencephaly, I would be more than happy to tell you everything that I know. For me, talking about it is very cathartic. I love it. I would much rather talk about it to a complete stranger, than to sit there and pretend that I'm getting a big belly and my baby is perfectly normal. Might sound weird, but that wouldn't be the first time someone thought that about me. :) Email me anytime!