Monday, October 25, 2010

Ughh what's been wrong lately???

I don't know what it is, but lately I've been so emotional. I don't like it. I don't cry, I just don't do it too often. I don't like to cry, so I try to find other outlets for my emotions other than tears. But lately, I can't help it. All I can do is think about Blake. And cry. A few days ago I got a letter from medicaid in the mail, just to confirm that all the medical procedures listed actually happened. It was from June, which included a refill for is Urso that he had to take, and then all of the procedures from when he was passing. I started bawling while reading that letter, out of no where. Reading through that letter was almost like reliving those two days. They went in order, and I could see where they started giving him blood, where they did CT scans and then when they intubated him and where they flew him to Gainesville and when they took him by ambulance to the hospital and all the meds they gave him and everything. And with every procedure, I had a flash back of that moment. I try to not think of those two horrible days, but every now and then it happens, but not usually the whole thing, just bits and pieces. This was everything. All of it. From the moment he wouldn't wake up and on until I gave him my last good bye. Since then and even a little before that, I want to talk about him always. But, when I do, I tear up. The past couple of days at work I've had to fight back tears when I'm up there by myself just thinking. My memory isn't the greatest, but moments with Blake I remember clear as day. I can still remember the moment I finally pushed him out, and how it felt like it went in slow motion as I finally caught the first glimpse of my beautiful son. I remember the way he looked at me with his dark eyes and sweet little face the first time I got to hold him, the way he was crying his heart out until I took him and started talking to him. The way he just stopped and stared into my eyes, and though I didn't think it possible, I fell in even more love with him. I can remember so many memories from him, and I want so bad to relive them, just to be with him again and make new ones.

He's been haunting me, in my dreams. He has been, and having another baby period. Every night I dream of him or having another baby. The first one I just had a new baby, a boy, blonde hair, blue eyes, and plenty of little pink rolls. I was amazed that such a baby came from me, and even more amazed because I didn't know I was pregnant until I went into labor and had him. Then the next night I dreamed that I had another baby, and this baby too had Alagille's Syndrome, and though I was happy to have another baby, I was sad. I was sad that this baby had to go through the same cruel disease, scared that this baby would meet the same fate as Blake, and guilty because that meant that I most likely carried the JAG1 gene, meaning I accidentally caused Blake to carry the same fatal gene. And then there was last night, where I dreamed that I had Blake still, but someone kidnapped him, and I spent the dream looking for him, wondering if he would still be alive when I found him. That wasn't a good dream, since I couldn't stop worrying if he was scared or hurt and anything, but I guess that's what I went through during the real thing too, but at least I could be by his side for that. Not that I could do anything to help or that he probably even knew I was there, and it makes me so sad to think of him gone like that, even though he's even more gone now.

I want a baby so, so bad. I don't think most people understand this need. They see it as baby fever, which I suppose it is, but on a different level. I loved being a mom, every part of it, and I felt like I was good at it, like it was my calling. It's like finding true bliss, or nirvana, and then having all of it ripped out of your hands. How are you supposed to live life now, when you've seen how much better it could be?

A lot of my friends (most of them in fact) that I was pregnant with before are pregnant again. I'm so incredibly happy for them, but I'm jealous too. I hate to say it, but I am. I'm jealous of their pregnancy, jealous of their joy, jealous of the fact that they can have their first child and be blessed to have a second as well. Maybe this sounds juvenile, and maybe it is, but I can't always help the way I feel. I feel like it's so unfair, that I'm not pregnant now, and that I don't have even my first born to be with. Like I feel alone. I know I'm not, but a lot of times I feel like I am, even when I'm surrounded by people I love. It's just not the same. I'm not looking to replace Blake, and that will NEVER happen, but I'd love someone to take care of, someone that I took part in creating and nurturing and everything. Now when I look at babies or pregnant bellies, yes I think they're cute, but I feel like I look at them with a sense of longing more than anything else. I want this so bad, but no one wants to give it to me.

I also would like to be married. No one in mind or anything, but I would like to be all the same. I want to be a house wife. I find these green ways to clean, and I find myself wishing I had a house of my own to clean. I find new recipes, and I wish I had someone to cook for. I want to start a family. Maybe this all sounds silly, but that's what I'm craving.

Sorry this post has been more depressing and selfish than anything else, I guess I'm just in a funk or something. Nothing new really going on besides these emotions. Not that they're new, just resurfacing I guess. I've heard grieving has a two steps forward, one step back approach, but i feel like I was more like ten steps forward, please return to GO. Like I'm all the way back at the beginning, trying to tame my raw emotions all over again. Hopefully someday I'll get this figured out.

Monday, September 27, 2010

Not sure about anything

I've been a little uncomfortable lately, and I'm not sure what it is. I just don't feel quite myself. Maybe a little depressed? I just don't know. I'm looking for change I think. I need some change. I get in these phases where I just need change and I just get uncomfortable with my life and how I'm leading it. Not that I'm leading a bad life or anything, I just...I don't know, need more hours in the day I suppose. I mean I've still been keeping up with laundry and cooking more and trying to clean more, which is fine, but still I'm wanting to move out badly. Again, not like home life is bad, but I'm craving independence. More than what I ever have before. BUT, it's frustrating, because I feel like everyone who's agreed to move out with me has bailed. Like I said, just frustrating! I mean I understand that money sucks, but if you don't think you can, it's cool, but don't get my hopes up. I'm thinking about just getting a storage room (climate controlled) for now so I can move Blake's stuff into it, just for the sake of space. Not that I'm looking to get his stuff out of sight, but seriously it's cramped over here. I could REALLY use the extra space, and I'll feel a little less bad about taking up all the space here. SInce I wouldn't be and all. So yeah, toying with that idea.

I feel conflicted. I've been needing to be more creative (as I mentioned in the last post), and I want to be, but I'm hardly ever home. I guess it's partly my fault, since I get cabin fever like crazy, but still, that's where the more hours in a day come in. I'm still working six days a week, so yeah. I'm really needing to sew some diapers for some people that I want to, and just to do it. And I want to scrapbook some more, since I had plenty to do for Blake. And I've learned to knit, but I need to keep up with it. And I need to be home more during the day since I want to play with photography more. Just a lot of things I'm wanting to do.

On another note, while still trying to decide what to do with my life, I'm going to Tallahassee on Friday to visit the Aveda Institute for hair design. Not sure if I'm doing it or not, but I've done a few friends' hair, including both cutting and coloring, and I liked doing it. So I'm hoping that I might like this? IF I do it. I have commitment issues I believe with school haha. But this would be another way to let my creativity escape.

AND I'm thinking about chopping my hair off. I'm not sure how yet, but I think it might have something to do with my need for change. I always do this, grow my hair out, get tired of it, chop it off, miss my long hair, grow it out, get tired of it, chop it off, etc. Never ending cycle!!! But at the moment I'm a little tired of it, so I think I might do it. Again, not sure! But when am I ever sure about anything?

I thought I was okay, but lately I haven't really been. Like just sitting there thinking about Blake makes me tear up, and I don't like to cry. I haven't been, but close to it. At work it's bad, because now I stand up at the front all alone, so of course my mind starts to wander onto the subject of him, and I just miss him more than I can bare. Yesterday when I came home, something was buzzing me and I freaked out a little until I realized that it was a blue dragonfly. It landed on one of our bushes in front of me and I was able to walk up real close and just stared for a minute. I said, "Are you Blake?" And it looked like it nodded several times, just as Blake used to do. It might have been a coincidence, but still it sort of made me tear up some. I just want my baby boy back. It feels weird even knowing I've had a kid before. I would give up EVERY night of going out to have him back in my arms. I want to be a mom again so bad, I can hardly stand it. A lot of my friends are having babies right now, and I'm SO happy for them, but so jealous as well. Nothing ever felt so right in my life as being his mom did, and I still can't fathom why that would be taken away from me. Maybe I just need to move on, but I don't think I'll ever be fully moved on. I don't ever want to be fully moved on.

Tuesday, September 14, 2010

Thinking my all time low has passed

Things have definitely seemed to be looking up. As much as they can be anyway. My bad luck I've been having seems to be fading somewhat.

Example A: I've been extremely productive lately. I've been super keeping up with laundry and cleaning and just feeling all around less lazy. A very good thing, since after Blake passed I just didn't feel like doing anything chore-wise, and just sort of fell into a slump. I did that periodically as it was, but after he passed it was bad. Maybe because I didn't want to move his stuff. I did, and it was hard to not cry in the process. But it is nice to see my floor again. I've still been holding onto his pacifiers and everything though. I'm not sure why it's so hard to part with those, but it is. I don't want to throw his things away, even small things like that, not yet anyway. Too soon I guess. Anyway, I also haven't been biting my nails lately. I've been dealing with that bad habit ever since I could remember, and though I stop sometimes, something will happen that stresses me out and I start up again (like the passing of my son possibly?).

Example B: I think I'll probably end up moving out soon. :) Unfortunately, Celise isn't able to, and that makes me sad. :( But I have another friend who I think is willing to, and she'll be able to most likely next month, which is when I was wanting to as well. :) I'm so excited to do the whole moving out thing, I think even more than I was the first time. Probably because I know for a fact that I will have help in paying for it (split rent and utilities), I'll have MORE than one room, and it's not as new this time around. It's not that home life is bad at ALL, it's just an issue of space. It's a small house, and I have a lot of stuff. I feel like such a free loader and that I'm cluttering the house with my stuff. Probably because I am. :P

Example C: I don't feel like I can write this blog about how much happier I've been lately and all the ups in my life without at least mentioning Adam. I must admit, I think he would be a big reason of why I've been smiling lately. He's just really sweet to me...well kind of. Well, actually no, he just rags on me all the time. :) I'm just kidding. Well, I mean he does pick on me always, but always in good fun (can't say I don't do the same to him), and he is sweet to me often. It's nice to find someone who seems to be as into me as I am to him. I think we have fun together, and so far, so good.

In other news, Mom's about to teach me to knit. :) I'm really excited! There are so many knitted things that I want to make, but I don't know how! On top of being productive lately, I've been feeling crafty too. I've been itching to make some more diapers, since I need to anyway, but I need to buy more of the backing flannel, since I only got the flashy outside material in bulk. Didn't really think about the other side...oops. I think I might want to start up a photography business on the side. I have a decent camera, and I don't think my photo taking abilities are that bad, so maybe. :) I'm going to use my friend's brand new baby (Ms. Eliana) as a guinea pig, with mommy's permission of course. I'm excited to see how that goes! Might be the make it or break it point for that idea. It'd be a nice second job.

School-wise, I finally got the letter saying I was approved for graduation with my associates of the arts degree in general education. :) Woo! Not that I was too worried about it. I think I might just go back to that school to get a degree in Office Administration with an emphasis in the medical office. Fancy wording for secretary in the medical office. But that's all I really want to do anyway. I don't really want to be a big career woman; I'm much more interested in just eventually getting married, having kids, cooking, and cleaning. I know people in the past fought for women to not be stuck in that sort of lifestyle, but all the same that's just what I want. Now I just need to find a guy who wants that for me too! Ha.

Well, I think for now that may be it. I still think of Blake everyday, and I don't want that to ever change. I've been missing him a lot lately, but when don't I? I just love him so much. ♥

Thursday, August 26, 2010

Nothing new really

It's just been the same stuff, different day pretty much. I try to stay busy most of the time, and for the most part, that works out okay. Work has slowed down a lot, it's sad. Which means less hours for me. :( And in turn, less money, not that the money is all that great out there anyway. But I guess at least I have a job, and a pretty stable one...not really worried of being let go anytime soon at all. I am trying to find a second job though. Me and Celise are STILL trying to move out, and honestly I'm just waiting on her, since I have money saved up for it all. I can afford the place we're looking at working at Fud's, but it would be cutting it close. We're looking to move out to Niceville, just because that's where we both go to school and I've just always liked Niceville a lot (don't ask why). So, I'm trying to find a second job out in Niceville where I could earn some extra cash. Celise wants me to start selling my diapers for some extra money, which would be good, but it's not going to bring in a lot of money, right at first anyway. So that's pretty much what I've been up to lately.

Blake birthday was a long, hard day. I was sad for a lot of the day and just lonely. I ended up going to the park I would take him to and singing him happy birthday. I even lit a candle for him.

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I just miss him a lot, and still always think of him. I've always believed that everything happens for a reason, but I still can't even begin to imagine what purpose him leaving so soon could have had. Sometimes I half way wish I just miscarried in the beginning. I mean I don't, and I'm so glad I got to meet him, even if it was just for a little while, but if I had of miscarried, I feel like I wouldn't have been as attached, less to miss I guess. I would have still been really sad, but I don't know. I've never miscarried, so I'm not really sure how I would feel. Either way I know I would be really sad.

Oh, I also got a tattoo in his memory. It hurt, but not how I thought it would. I'm really happy with how it turned out. :)

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In other news, dance classes have finally started and I'm so glad to be back into it. I've missed it a lot! And it's nice that I haven't COMPLETELY lost my touch. I mean, don't get me wrong, I'm out of shape and out of practice still, but haven't lost it all. :) Muscle memory is a wonderful thing. And the story of boy meets girl has happened again, on technically Blake's birthday. It's nothing official or anything, but he sure knows how to make me smile. :) But I'm not in any rush to get back into a relationship, so I've decided to just play it by ear, and whatever happens, happens.

So yeah, that's pretty much all that has been happening lately. Just hoping to move out super soon. Not that life at home is bad or anything, I'm just excited to be independent once again (besides the whole bills thing...ha). Hopefully that will happen sooner rather than later!

Friday, July 30, 2010

Happy almost first birthday Blake

It's so hard to believe that at this time one year ago, I was in labor, preparing to meet my perfect baby boy for the first time. Before I knew all the things that would go wrong. I mean, I knew some things were not going right, for example the fact that he had quit growing, but I never thought it would end in this way. I would give anything in the world to be back at that hospital and with child again. I miss him so much. Not a day goes by that I don't think of him. I don't think or plan on that ever stopping either.

Last week my friend Sabrina had her daughter, Stella's, birthday party. Her and Blake were exactly three days apart. We were at one point going to have a combined birthday party, but obviously those plans got foiled. She still had a little area set up though for him. Sabrina, Kathy, Kassie, their daughters, and I all wrote notes to Blake on dragonfly card stock cut outs and stapled them to balloons. We then sang happy birthday to my beloved angel and let go of the balloons for him to receive. It was beautiful, and I was on the verge of tears (I hate crying, especially since I had to go straight to work after) the whole time. Going to the past few birthday parties for my other friend's babies was fun, but still hard. I can take it, but it was so hard to watch them play in their birthday cake. I was so looking forward to the moment that Blake would be able to do that. I hope my next kids, all of them, are 100% healthy.

The other night I came home late and it was a cloudy night, but it was still beautiful anyway. I looked up into them and saw my son, my baby. Call me crazy, dazed, mad or whatever, but I know what I saw. The baby in the sky even had Blake's feet. I couldn't bring myself to move from that spot, so I didn't. Instead I stood out there and talked to him. I told him how much I loved him and wished him a happy early birthday and such. I told him more about his favorite dog and asked him if he could say dog, like I always did. That was his first word after all. As I talked to him, eventually his shape in the clouds shifted away, but in another part of the sky another image came to life. There was a vivid image of my favorite ultrasound picture of him, back when I thought everything was okay. It had the hand on top of his head and everything.

I miss being a mom so much. I even find myself doing motherly things around my friend's kids, and I hope it doesn't bother them, it's just a habit. Like wiping messy faces or freaking when they fall or just playing with them. I'm so lucky to have such a wonderful group of mommy friends that allow me to play with their babies, it helps a lot. I just can't wait to do it all again. A lot of my friends just had babies, and as happy as I am for them, I'm also so jealous. I want so bad to hold a new bundle of joy in my arms. I think it would help me a bit to move on from everything. I'm not super struggling now, but all the same I think it would help. But as weird as it sounds, I think I might actually want to get married first. I'm just worried that it'll take a while. I'm single as it is right now, so I guess not even heading in the right direction towards marriage. I want another baby on the way now, but obviously I would never get married that fast. So I guess I'll just have to be patient. Patience was never one of my virtues.

In other news, I just signed up for a dance class. I'm really excited, I haven't danced in a long time (not with a class anyway) and I just really miss it a lot. Me and my friend Celise are going to take it together. I'm just worried that I'll be really bad at it since I've been out of practice for so long. I just hate doing a bad job at anything. I'm still excited though, I just can't wait! That's the only class I'm signed up for at the moment. Still no clue what to do. I think I'll just go ahead and do the dental assisting program. I have a little bit of a medical background that I think will help out a little, and it's only a three semester course. I like the shortness of it. I mean, I already have my associates degree, so now what? I can't get a Bachelors at NWFSC, and either way I'm not sure what I would get it in anyway, and this is quicker. But I'll have to wait until next year to start since the deadline for applying for this year has passed, so I guess I'll just dance and work this year. I can live with the break. :) Maybe the break will get me super pumped and ready for the hardcore program ahead of me (or just make me dread it haha). I guess it's time to put my big girl panties on and move on with life. I mean, I'm 21, living at home, and still working in a restaurant making next to nothing for pay. I say it's about time I got my stuff together.

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Blake's birthday balloon send off. I love you sweetie, happy first birthday. <3

Sunday, July 11, 2010

And a month has passed...

Today has been a month since the day my little angel passed. What a month it's been, full of ups and downs. Worst month of my life. I'm not sure how I've survived it, but somehow I have. I can still remember every detail about this day a month earlier. I can remember the way his hair felt when I rubbed my lips on it, I can remember how his cool head felt on my chest and beneath his hair, but how warm the rest of his little body was in my kangaroo care. I think the coolness of his head is the sensation that stands out most for me. He always had a warm, sweaty head, and it was so different feeling it that cool. Me thinking about it just brings tears to my eyes; to me if felt like a sign that he really had left his body, and it felt so empty. Today is going to be a hard day.

Last night at work (in reality, a few hours ago), while I was doing my closing duties and was alone, I sang him his lullaby (Colors of the Wind, when I'd sing it to him, he'd always calm down) and towards the end and after I had goose bumps and felt chilled. I'm not sure if it was just a coincidence or maybe from me thinking of him, or if maybe he were there with me; I'm not sure how one would feel if they knew a spirit was there with him. I hope he was with me. I've finally dreamed of him. The first dream I had wasn't really a good one; I had dreamed that one of my sisters had died, but he was alive. It was still sad, and randomly in the dream I was walking around a store with him wondering why I couldn't buy him things anymore, like I knew for some reason I couldn't, but I couldn't remember why. And then the second and latest time, he was just alive, and I was again confused. Like I knew he was dead, but he wasn't, or like it was something I knew was coming soon, but he wasn't. It's hard to explain. Like he was gone, but still with me and I still took care of him and he still cried and needed changes, and slept and woke up and talked and ate and everything. Why am I confused in all my dreams? In all of them I feel like I'm missing a key part of information, like I just couldn't remember, the feeling you get when you walk into a room and you just KNOW you came in there for something, but can't think of what exactly. That's how I feel the whole dream, but he's with me, and I never want to wake up.

I'm still desperately wanting another baby, boy or girl. I can't decide which I'd rather, but not like I have much say in it anyway. It was really cute at work; there was this little girl, couldn't have been more than two, and she kept talking to me and grabbing my hand and pulling me around the shop. After a couple times of that, I was standing behind the counter and she walks over and goes "Hey!" so I say hey back. Then she blurts out "I love you!" It was SO cute. She had blond curly hair (think Shirley Temple), a big white bow in it, and big blue eyes. Adorable! Melted my heart. Or the other day Stella (Sabrina's daughter) was crawling/walking around the living room while I was visiting and she came over, sat in my lap, and laid her head in my chest. It was really sweet. :) I wonder if she remembers Blake, or if Blake visits her. I need another little baby so bad, and hopefully one without any health problems this time. I'm not sure what I'd do if my next baby had AGS. Well, yes I do, I would love him or her unconditionally and hope and pray that he/she has a better ending than little Blake did, and that they grow old without any big complications. But regardless, I hope they don't. I think this time I would be even more worried about things going wrong big time, and I was worried enough with Blake. But, things seemed to be going good for the most part, but then that happened. So even when things would seem good with the next baby (really whether he/she has AGS or not) I'll be a little worried that something will be wrong and I not know it. How will I be able to NOT have a CT done every once in a while to make sure my baby isn't bleeding in the brain? As if my paranoia needed to get any worse.

I've been faced with a lot of choices lately, but much too complicated to be put here and subjected to everyone's criticisms and such. Just kind of stressing me out. But me and my friend Celise should be moving out together soon, and that makes me super excited. :) I really can't wait! We're fun together. So at least there's an upside to all of this. I'm not sure, just today has been hard. It's been a while since all I had to do was look his picture and I could start crying. I just want my little boy back.

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Saturday, July 3, 2010

Has it really been that long already?

So it's officially been three weeks since Blake has passed. I still miss him a ton, but I guess the pain is a little less now. In a way. I've dealt with a lot of deaths I suppose (my dad and a few friends, some closer than others), so I feel like that has kinda helped me know just how to deal. Regardless, this is harder than any of those other deaths, but I've been trying to keep going.

I've been meaning to write a new blog since the last one, but just couldn't think of what to say. I'm back to work now and have been bitten by the creative bug. I've been doing projects left and right, keeping busy so that I don't have too much time to dwell on things (never a good thing for me). It's fun, and it's making me better at sewing and such. I just wish I still had Blake to sew for. He's such an inspiration to me. If it weren't for him, I would've never even thought about learning to sew, but I'm glad I did. I feel like I picked up on it all pretty fast, and maybe it's in my blood (Mom is a fantastic seamstress). She's agreed to teach me how to crochet and knit, so hopefully I'll know how soon. :) I've been driven more than even now to start up my own business. I've decided to call it Dragonfly Meadows Diaper Boutique. Through that business I plan to first start making fitted diapers and donating them to third world countries, for families that can't afford diapers on their own. I want to do this in the name of Blake. Second I plan to take a portion of my profit that I make with my business (hopefully I actually have some customers!) and put it towards the Alagille Syndrome Alliance. I just want to do whatever I can to help people. I love helping others, and I want to do something to help another family with AGS to not have to experience what I (or many other families) have experienced. Hopefully that all works out.

I'm also looking at a new job. My friend notified me that a lady is hiring on base (making appointments), and I was given her number. I called but had to leave a message, but she never called back, but with July 4th right around the corner, she may be swamped or just gone, so I plan to call back Tuesday if she hasn't gotten back with me before that. Man, I hope they still have the opening. The pay is WAY better than my current job, the hours are better (still full time), more constant, and it's only Monday through Friday. With this new pay, I could afford to buy a house. I could do so much more with this new pay. So wish me luck and cross your fingers for me! :)

I still have hard days. They have gotten easier than those first few, but I still have moments where I forget he's gone, and then some where it feels like he never really existed. And then there's a lot of the time where it feels like I'm still pregnant with him. Sometimes I'll even feel phantom movements or aches and pains like I would get sometimes when I was pregnant and think it's him. It's hard to look at all the cute pictures of him and think about never taking any new pictures of that beautiful face ever again. There's still some photos on my camera that I need to upload, I just haven't yet. There are clothes he's never worn, shoes he's never filled, places I never got the chance to take him. There was so much that I wanted to do with him. I want another baby now (have for a long while), and I'm tired of people insinuating that I'm trying to replace Blake. That's not it at all. At all. I try to explain it to people, but they still don't get it, I guess unless you've lost a child. Everyone I've talked to that has lost a child understands where I'm coming from, so I know I'm not crazy. I really do think it would help me along in the healing process a lot, as it has for every other parent I know that has conceived again after the loss of their baby. This was definitely not a group that I had wanted to or planned on joining. Every night before I go to bed I watch my favorite video of him on my phone, and he just laughs and coos and is so happy, exactly how I want to remember him. Sometimes images from our last hours together haunt me; that's not how I want to remember him. But still, from time to time an image of my lifeless baby will flash in my mind, or from the morning where he first went into his coma or when he was doing the odd squirming with his arms. I believe I saw him when he first went into his coma, when I thought he was just sleepy, and I think that's where I find the most guilt. I try to not do this to myself, but I still can't help but to wonder if this would've turned out differently if I had tried to wake him up then and figured this out sooner. I try to tell myself that once he went into the coma it was probably too late, but I don't know that. Hours passed before I realized that something was wrong. Time was of the essence, and I wish I had figured it out sooner. I just miss holding his sweet body next to mine, he was such a cuddly baby and a mommy's boy. I would give anything to have him back in my arms. I'm still getting the emails that I signed up for about how old he is, week by week, and what's probably happening this week developmentally. I should probably turn them off, I just haven't taken the time to do it. I guess all I can do now is cross my fingers and hope and pray that the next baby won't have anything wrong with him/her and remember Blake everyday. I do anyway, and I still talk to him him everyday, telling him how much I love and miss him, and pretending that his little dog is his body pressed to mine instead. I just can't wait to see him again, and not have to worry about letting go.

Saturday, June 12, 2010

Hardest blog I have ever written

My sweet, beautiful, baby boy, Blake has passed. This is by far the hardest thing I have ever encountered in my life. I'm not really sure how I'm going to function without him. I've been in a state of shock for most of the past two days. Sometimes I realize that this is really happening, and other times I try to think that he's still in the hospital, and we'll be able to bring him home soon, just like he was when he was a newborn. I miss him so much. I feel like I have this void in my life now; I miss being his mommy. I have no one to take care of now, and I feel absolutely empty. I guess I'll start at the beginning of when the problems started.

Thursday morning, June 10, 2010, around 7:00 am, I awoke because Blake had started coughing. It sounded like he was a little congested, so I immediately picked him up and tried to help him, patting his back and such, and he seemed to get whatever it was out and rubbed his face on my shirt. Typical Blake. The night before had been normal, he was his normal adorable, happy, alert self. I actually took a picture of him from the night before.

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As I was holding him, he smelled like he had a dirty diaper, so I went to change him. Normally when I change him, his hands go immediately to his private area, just because he is so incredibly itchy, and we always have to hold his hands down so he doesn't hurt himself or bleed from his grip. This time was no different, he was grabbing at himself, mom came in to hold his hands for me, and maybe two seconds after he just fell asleep. We thought that was odd, but figured he was probably tired, since we normally don't wake up until 11:00 or so (we're night owls). So I laid him back down, and what I thought was in his sleep, he started whimpering a little, but stopped quickly too. I thought he was having a nightmare, but since he stopped soon, I went back to sleep. A little later, like around 10 or 11, he started to do it again, so I picked him up and snuggled with him for a bit. He was still what I was thinking, asleep. After a while I got up to get ready for the day, and when I was done I decided it was time to wake him up, thinking that he was just being a little sleepy head. He wouldn't wake up. I went and got mom, and we rushed him to the ER. I was able to get him to eat a little bit, and he was still fussing and squirming oddly, and we were both scared to death. There they did a CT scan and confirmed that he had blood on the brain. I was fearing that the whole time, because I remembered being told that some babies with AGS had weakened blood vessels. They tried to stop the bleed and such by giving him blood and saline water (he was severely anemic and his sodium was very low). They eventually had him flown to Shands in Gainesville, but for some reason I couldn't go with him, which broke my heart. We drove up there though, and when we were about in Tallahassee they called me to tell me that the only thing that Blake is doing is taking a breath occasionally, and his heart was beating. They told me that the bleed was catastrophic, and that he's otherwise completely brain dead. The last two and a half hours there was so hard. When we took him initially he was breathing on his own, and responding to some stimuli. And now, since I'd been gone, all of that had gone.

When we made it there, he was still breathing over the machine every once in a while. It was so, so sad watching him hooked up to everything like that. They said that the bleed was so bad that it had to have started the day before, but nothing at all showed. The day before I took him to party city to get a start on planning his first birthday party. Now I'll never get to.

They had a rule there that only three people at a time can be in the room with the patient. Me, my mom, and my sisters all came, and that would leave one person out. Luckily the doctor told the nurse to make an exception. The first nurse wouldn't let me hold him or anything, but then another nurse came in, who wasn't really his, but took over, and let me hold him, and that's how I slept that night, for about the hour that I slept, holding him close and giving him lots of kisses. Once when he was laying down before I picked him up, he reached out his hand and I put my finger in it and he grasped it so tight it hurt. I'm sure it was just reflexes firing off in his brain, but I'd like to think he was squeezing my finger to let me know how much he loved me. When I woke up with him he had gotten all these bruises all on his body, they said because of his liver. It was so sad to look at. Eventually I had to go to the bathroom, which meant I had to put him down, which was so, so hard. I knew they were all waiting on me to make the decision to take him off of all the machines, but how could they expect me to do that? How could they expect me to let him die like that? Hours later, they did some tests on him to see if he was completely brain dead or not. That was extremely hard to watch. Especially the apnea test. I watched my beautiful little boy not breathe for five whole minutes. Twice, since they repeated the test, just to make sure. He was declared officially brain dead, though his heart was still beating, but they told me that his heart could beat for a very long time and still be brain dead, so long as they kept him on the machines. Finally I made the decision to take him off, since there was no hope left at all. My little angel passed finally at 12:40 pm, at exactly 45 weeks old. I conceived on a Friday, found out on a Friday, gave birth on a Friday, and lost my whole world on a Friday. When they did, they handed him to me, wrapped in his favorite blanket, and it reminded me of when he was first born. I took my shirt and bra off and laid his bare body on my bare chest and covered us both with his blanket. I sat there like that for about an hour, and let my mom and sisters hold him too. It was so hard holding his lifeless little body, so hard. I think the nurse (a new one...shift change) thought I had lost it, since she looked at me like I was crazy when I laid him on my chest like that. Later on she came in a couple of times trying to get me to lay him back down, and I told her not yet. I couldn't give him back. She said, "You know he's gone right?" Of course I knew that. But he was still my baby. This was the last time I could ever hold his precious little body again, could she not understand that? His head was pretty cold by the time I gave him back, but everything else was still warm, probably because of the kangaroo care I was giving him. I kissed him a ton, sang to him, talked to him, rubbed his back and nuzzled his hair like I always had done. When I finally had to put him down, I was still bawling and kissed him so many times. He looked a lot like my dad did, laying in the hospital bed, dead. When I left I had to leave quickly. I was so hard giving my little baby back.

Before they took him off the machines, they had a little hat on him, and it reminded me of when he was first born also. He looked like a little baby doll.

Sorry, this is kind of not in great order, but my thoughts are so scattered right now.

Afterward I was standing outside with mom, crying, and a dragonfly, dark blue, just like Blake's eyes, came and landed on a bush near us. I pointed it out, and it just kept coming closer and closer, until it was very, very close to us. It kept looking like it was looking at us. It was alone, no other dragonflies around. I hope so much that it was Blake telling me that he's going to be okay, and that he's with Grandpa now. I hope so so so much that was him letting me know that he'll be okay and wait for me when I go. I keep feeling like this is goodbye for now, not forever, and I don't know when I'll finally really grasp that this is for forever. I can't throw his pacifiers away, I can put his bottles away, I won't ever get rid of his clothes. We share a room, that empty crib....I can't do this.

His liver doctors had come to visit while we were in Shands, before he was declared brain dead, and they said they think a blood vessel in his brain just spontaneously popped. They told me that weak blood vessels occur in about 10% of AGS cases. Death also occurs in 10%. Such low percentages, but not low enough. I didn't think Blake would have either of those, he had such a relatively mild case of it. So many others were much worse off than him, I thought he'd be a fighter for the rest of his life, his long life.

I'm not a religious person at all. I don't believe in heaven or hell or God, but I hope so much that there is something, anything, after this life. I hope his spirit really does carry on, I hope so, so much. I can't live with the thought that his soul is gone forever. I have to know that he will live on, maybe in another form. I have to know that. He was such a little sweetheart, and so loved. I'd sit down next to him and he'd crawl over to my lap, climb on me, when I got home for work he'd get all excited, he would give me his slobbery kisses, try to share food and pacifiers with me, just so sweet and loving. I can't do this.

Thank you so much to all the people who give their condolences. We don't need anything at the moment, but thanks so much. I'm not ready to see anyone either, but thanks anyway. I just need to be alone for a little while. To miss my sweet little angel that lost in the cruel battle of AGS.


Rest in peace, my beautiful little boy, Blake Konnor Postlewate.
July 31, 2009 - June 11, 2010
I love you so very much, always and forever.

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Saying goodbye. <3

Friday, June 4, 2010

Boo on Gainesville...kinda

So man, this last trip wasn't the greatest. First off, we ended up with the doctor there that I can't STAND at all. He's just rude and won't listen to a thing I say! Like he has in his head what he wants me to say, and goes off of that instead. Oh, and he talks to my mom the entire time. She drives me and Blake, so I can sit in the back with Blake and take care of him, and she drives. It's MY kid, talk to ME. Makes me so mad!!! I'm the one who answers him, she doesn't, so wtf? And he started talking about how Blake's ped needs to make sure that he keeps in touch with them really well, and I told him that he tries to, but no one ever answers, and he went on to say that he can't just say what do I do, he has to ask a question, and I said he did, and no one ever answered him (he's called and faxed them before), and then he just completely changed the subject. Wow, thanks. Also, there was a I think doctor in training, and he was extremely nice and Blake liked him a lot. This other doc proceeded to be rude the the trainee as well, in front of us and everything. Really? How unprofessional can you get? And it wasn't for any good reason at all. This is the same Doctor that changed the surgical procedure on us without any notification and then was annoyed when I said no. Needless to say, I've never really gotten along with this guy. I've tried to request the one I love, but I hardly ever seem to get him anymore. But anyway, he said that it's looking more like Blake will need a liver transplant, but I don't see how he could make such an assumption yet. I've read that a lot of times things won't get better until they're three. So basically two years from now. Anyway, he quickly back tracked from that statement when I brought up that fact and said that he doesn't really know, and we'll just have to wait and see. Well, obviously. I really hope he won't need one. If he decides that Blake does though, I'm going to get a second opinion. I don't really trust him at all. At least this trip was short.

So I've decided that I want to buy a house. I applied for the government job tonight, so I guess I'll see how that goes. It would definitely be nice if I could get it! The house I want is in Crestview, and is for only $89,900. Well, that's at the full market value. Very cute house. :) Even if I could get a full time job at $10/hr, I could afford it. Or if I got married I could. But I don't think that's going to happen for a little bit!

I've been feeling overwhelmed lately. I don't know why I get like this sometimes. Just feels like everything is a difficult task. I think a lot of it is the fact that there isn't enough room for me and Blake here. It's just too cramped. Probably (definitely) a big reason of why I would like to move. Maybe I should just wait to get married though. It would definitely make things easier, money wise. And then I have so much paper work to fill out. I need to do my FAFSA, my application for graduation, I need to call UWF and see if they have anything for ASL interpreter programs, need to call Medicaid and ask to speak to a manager to see WHY they are refusing to pay this huge bill from his birth. That doesn't make any sense, since it's covered and everything. I'm just dreading that whole thing. Thanks, Medicaid, for trying to ruin my credit, I appreciate that.

Anyway, it's late, so I should probably get to bed. Night!

Monday, May 31, 2010

10 months!

I cannot believe that Blake is ten months old today! Where has the time gone? And what a past month it has been. So much has happened! In the past month my little boy has learned to crawl, gotten his first two teeth (the two bottom middle ones), shakes his head yes and no (though mostly no...haha), says "uh uh," gives me high (well, low) fives, I think he's saying "dog," Andrea and Mom have heard him say "thank you" after they blessed him for sneezes (two separate occasions), he gives me what I think are (very slobbery) kisses on the cheek, and he's learning to share a little. He also loves to climb any and everything. In fact, typing this blog is proving especially hard, since he's crawling all over me and the computer, just being too much help. :)

The other morning, my mom had gotten him in the early morning when he woke up, and later laid him on my chest. He started crawling up to my face (he likes to get super face to face with me), and she said "Do you love your mommy?" and he nodded his head yes. Best wake up ever. :)

About a week ago he was eating a banana out of his little mesh feeder thing, sitting on my lap, and he tried to feed me some of it, then he'd eat some, and he'd try to feed me some, and did this for a while. That was the first time he's ever shared! And it was with me! :) Now days he doesn't care about baby food at all. He just wants to eat our grown up food. It's cute, but since he kind of gags for most solid foods, that doesn't always end too well. He LOVES bananas though. SO MUCH.

Let's see, what else can he do? He can walk backwards only in his walker. He seems to understand a lot of what we say to him. Like earlier, I asked him if he was being silly and he said "uh uh." It was cute. :) Me and Blake actually play a game where he smiles and sticks his tongue out (his new thing...hehe) and shakes his head no and says "uh uh," and then I'll nod and say "uh huh!" and we'll go back and forth like that for a while. It's so sweet! He's just got such a cute personality.

He's grown a lot too. He's now around 13 lbs. :) Finally! And I can't believe that in two months, i'll be celebrating his first birthday! I really need to get on the ball with planning his birthday party. I pretty much know about what I'm doing, but not really in detail. I would go check everything out tomorrow before work, buy of course it's memorial day and everything that I want to do is closed. Boo! Oh well, maybe I can FINALLY do my FAFSA, since it's due by June. And while I'm at it, maybe I'll go ahead and apply for graduation, so I can officially have my associates. :)

I've been really into scrap booking lately. I'm glad that I've finally started to do it again. Even now, I'm only in about month five of Blake's life, so I guess halfway through! Haha. It's turning out pretty cute in my opinion though. :)

We go back to Gainesville on the 2nd of June. I'm pretty happy to be going back there, not so much for the trip, but more so because I'm hoping they will give me some meds to give Blake for his itching. I hope it works, I've heard it's a hit or miss. I'm not a big medicine person, but it's so hard watching him be so miserable and tear into himself like he does, I'll give him more medicine if it will help him. He goes back and forth between being in a super good mood all day and being just taken over with the itching. And those times are the absolute hardest, just because there's not a lot you can do for them. :(

And also, so sorry for not blogging in a while. I've just been in such a funk, I just don't feel like using technology. I just feel like closing myself off from the world for a while, just me and my baby. I watched The Sisterhood of the Traveling Pants tonight, and just watching Lena spend time by herself in Greece seemed amazing to me. I want that right now. I want to just spend the days not worrying about anything but me and my baby. Not about work, not about chores, not about getting online. I just feel weird, like fed up with people. Not really anyone in general, I guess just having to be social. I think a lot of it is having to bow down to tourists at work. And then I'm a little stressed because I guess to get the apartments I want (well, am trying for, because that's all I can afford), I have to ask for child support. I do NOT want to do that. Seriously, that's enough to make me say never mind about the apartments period. But I need space. So badly. This house is so tiny, especially for as many people as we have crammed in here. And I'm so tired of working. I feel like all I ever do is work now, and I hate it. But gotta pay the bills. Know anyone who's hiring with good hours and pay? That'd be nice.

Mom wants me to just stay at home and save up for a house, which is very tempting. I want to buy a house so bad. And I think I want to get married. Not right now or anything, but I think I do one day. The only part I don't like is having to cater to someone else like that...for example, what if I want to paint the walls green, but he wants them blue? Then what would we paint them? I have ideas of what I want my house to look like once I have one, and Ray does too. The only problem is that they're not really the same ideas. But I suppose we'll work something out. :) Not saying that Ray and I are getting married, but he's the current guy and decided to use him as an example.

Well, since it's very late (or rather early!), I should get myself and Blake off to bed. Night!

Tuesday, May 11, 2010

Cloth diaper stash!

Alrighty, here is the cloth diaper blog I promised! :D I want to start off by saying that on some of the diapers, such as prefolds and wipes, only show a few of the collection. I have more of both, but I didn't feel like dragging all of them out. :)

Here is the whole stash at a glance.

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Now to pick through it all!

First, here are the prefolds. They're just the gerber prefolds. Nothing luxurious, but they certainly get the job done! Some of mine have this polyester pad sewn in the middle, some don't. These days I'm actually preferring the ones that do, just b/c it's extra absorbency and seems to snappi better (in my opinion).

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Next are my flats! These are all I have of my flat diapers. I like them okay. I just got them not too long ago and am still getting used to getting an awesome fit with these. If I work at it, I can get it, but with as much as Blake hates diaper changes, getting that awesome fit is a very hard thing to achieve (escape artist!). I think with practice though I'll get better at it. :) I do like how ultra trim they are thought! Trimmest diaper ever.

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These are all my doublers and inserts and such. Starting from the left, we have the plaid fleece liners I made (I put these on the top layer of a lot of his diapers, amazing at pulling the wetness away!), brown microfiber towels (I use these mostly in the pockets I make, or sometimes wrap them in a prefold and use them in my Flip covers), under those is a fleece lined Kissaluv's doubler, then my stay dry Flip inserts, hemp doublers from Hemp Babies (these are amazing!), then some microfiber newborn inserts from BumGenius, and then above that some terry washcloths. Those make nice trim doublers. :)

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These are all my fleece pull up covers. I'm not a big fan of these. They do what they're supposed to do, and are SUPER cute, but what a pain to get on, and over a diaper! They're just such a battle to pull on, I don't use them a whole lot. But in a pinch, they will do.

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All my other diaper covers! All of these except for the one with the trees are Flip covers. Favorite covers ever! I'm in love with these. And the whole one size is cool. :) The cute cover with trees is a Thirsties Duo Wrap. Super cute! But everytime I've used it, I've had a leak or at lease pee on the outside on the first wear. Maybe I'm doing something wrong, I don't know, but I don't feel like I'm any beginner at putting on diaper covers, so I don't know! I've seen so many raves on these covers, I feel like I should love them too! So maybe I am doing it wrong, don't know!

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These are my wipes. This was my first diaper sewing project. It's just flannel that's surged. They work pretty well though! I have a ton of them, and use them for everything. :)

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Now for my bumgenius AIO and some fitted diapers. I really like these diapers, both of them! I'm sad that they And making the bamboo fitteds though. At lease I can still buy the AIO's!

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And finally, the diapers I made! In this order, fitted pocket, AIO pocket, fitted pocket!

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Let's take a closer look at these newbies:

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Last I would like to say I also have three gDiapers. I don't really ever use them. They're SO cute, but I can't get a good fit with them. I think it's because Blake's thighs are so tiny. My friend uses them and they work well with her! But anyway, I just forgot to take a picture of them. Oops!

Well, that's about it! Hopefully more to come, because I'm loving making some diapers lately. :)

Sunday, May 9, 2010

Happy Mother's Day!

My first one. :) Unfortunately, I will be at work later on, and even more unfortunately, it's Sunday, so I will be taking the inventory (pain in the you know what). BUT, I'm determined to make the best of it! Little Blake got me a balloon and some candy, what a sweetheart! And the card I made my mom, yeah she thought it was store bought. Who makes awesome cards???? Haha. :D

Blake's been doing alright, I think he's sorta close to cruising. :) Yesterday at a birthday party I had him standing next to a bench, and he scooted down it a little bit. Baby steps (no pun intended)! Speaking of birthdays, I can't believe my little man is about to be a year old soon! It's just SO hard to believe. I was looking at birthday cards the other day, and came across some first birthday ones and, no joke, was on the verge of tears! I don't really cry a whole lot, especially over things like this, but I really was close. I don't want my baby to grow up! I mean, I do, but it's all so bittersweet.

Baby boy has been pretty itchy, but it doesn't look like his xanthomas have gotten any worse. Not any better either, but at least not worse. I don't think they'll go away until his cholesterol gets lower. I'm a little anxious for him to reach the three year mark, because I've heard that a lot of times kids experience spontaneous rapid improvement around that time. I'm so ready for that for him. I feel so bad, he seems so miserable these days, just with itching so much. I wish I could take it all for him, the itching, the jaundice, any heart problems, all of it. It's so not fair that he has to go through all of this. Everyone who has non-jaundiced babies who are not itching horribly at every moment needs to be extremely thankful. It's so hard to watch him go through this, and I feel so, I don't know, helpless. I want to help take that away for him, but what can I do? I help scratch him, I lotion him up, give him his meds/vitamins, what else to do? He seems a little less happy-go-lucky than what he was a couple months ago, and I'm sure it's because of the intense itching. I hate that he has to spend his most worry free innocent years being too busy with scratching everywhere and being in such discomfort. I'm extremely thankful for my sweet boy, don't get me wrong, but I wish he didn't have to go through so much so young. I know there are people who are worse off than us, but all the same he's my baby, and I want to help him through every little discomfort he may have.

Anyway, on a happier note, I've made two new diapers since the last post. :) One is another flannel pocket diaper, and the other is an all in one pocket. I made it with fleece and then cotton knit on the back and wings for decoration. I think it turned out pretty cute, if I do say so myself! I haven't tried it out yet though, so I'm not sure how well it's going to work. Once I get more proficient at making these, I think I might start taking some volunteers to try out these diapers to see how truly "one size" this pattern is. The first one I made seems to fit Blake great. I usually stuff mine with a micro-fiber towel that I bought a pack of at Ross, and they also have them at Big Lots and I'm sure any other store, and that seems to work well. But you can also use a prefold or really anything that you prefer. :) Let me know what you think of that idea, and if you would be interested in trying out any! :D

I will post pics a little later today, in a new post. I still need to take/upload the pictures! :)

Wednesday, May 5, 2010

Oh how time flies...

I want to start off saying that I canNOT believe that Blake is already 9 months old! And get this, CRAWLING! Finally. :) I knew he'd get it, and he did it for the first time yesterday. He's still working on perfecting it, but he's definitely getting the hang of it. He's growing up so fast! I mean, he's a pro a sitting up super straight with no problem, and he's getting better and better at sitting up from laying down and pulling up to standing. He's always trying to pull himself up to standing. And he's so proud when he does! :D

I think he might be somewhat grasping the concept of sharing. Tonight he was playing with his pacifier, and kept holding it out to me. Everytime I went to take it, he'd snatch it back, until finally I opened my mouth for him and he tried to put it in my mouth (sideways, but it's the thought that counts!). It was so sweet!

Let's see, what else...hmm, well he's still jaundiced, and still itchy, somedays worse than others. He's starting to get xanthomas on his fingers. :( I also feel like he sleeps a lot more than other babies his age, probably because of the jaundice (makes them sleepy). Last week (I think?) he was 11 lbs 12 oz, so ALMOST 12 lbs. But, he was a little over 26 inches...last time I took him only a month before he was 24 inches, so that's not bad I don't think.

Oh! He's also turning into quite the chatterbox! He doesn't say any words yet, but man he babbles like no tomorrow! :) He says rarara, bababa, dadada, gagaga, etc...but still only mama when he's crying or mad. :( Oh well, one of these days, hopefully soon, he will!

As I side note, not about Blake, I finally have my AA! Well, kinda. I have my classes done, and I need to apply for graduation. I was stupid and missed it for this semester, so I have to wait for the end of summer to do it. But anyway, I'm basically done! And it feels SO good. :) I think I might know what I want to do now too: ASL translator. It just sounds like something I want to do; the more I think about it, the more excited I get. Now I just need to find a school that has the program (preferably not online). I'm working on it though! Or maybe I'll see if I can take the sign language classes at another school and do the rest online or something. I would prefer to do it in person though. Another side note: I'm finally down to one or two pounds lighter than what I was pre-pregnancy! :D Woo! The only down side is that all (ALL) of my work pants fall off. I went to buy some in a smaller size, and they were out of that size. Boo! So this was the smallest they had. Oh well. And yet another side note, me and Ray are doing AMAZING. :) So, so glad that we decided to date!

Well I think that's about all I have to ramble about for now. :) Not really any new pictures to post this time around, just been so busy doing finals and then working, but next post I think I'll post some pics of my cloth diaper collection if anyone is nosey enough to want to know! I don't know, I love looking at diaper collections, and I know I'm not the only one! Maybe I'll have made some new diapers by then! :D

Monday, April 19, 2010

Another first!

Today Blake finally drank out of his sippy cup! He seemed to be having problems transitioning from the bottle to a hardish sippy cup, so I tried the Nuk sippy cups (since he uses their bottles, why not), and it was a good buy. :) The sippy cup top is out of the same silicone that the bottle nipples are, but a little firmer and a little more controlled flow. Worked wonders! I'm glad. :D

Had some more sperm donor drama today, but thinking it might finally be over with. :) We can only hope!

I've started putting Blake in his crib to sleep. Tonight would be night number four that he sleeps there. :) He does good in there. He still doesn't sleep through the night, so it's a little more of a pain on my part, but oh well. He's fallen off my bed twice, so I figured that I guess it's time for the crib. Except I put him in it tonight, looked over a minute later, and his little head pops up. Guess he decided that he loves standing up! Little stinker. :)

I finally have pics up of my diaper! Woo hoo! I definitely need to practice making more and improve my sewing, but it's getting there. A lot better than I was when I first made my wipes! I surged those though, which in my opinion, is a lot harder! Less forgiving more so. But anyway, I'm pretty happy with how this turned out! It's made out of flannel. Flannel doesn't snappi too well, so I've been using pins. I'm not too efficient at pinning, so I need some practice. And for me, it was really hard to pin through. But maybe it was just me! I think I'm gunna try to make some with cotton knit over the wings, to make it more snappy friendly. :) I also want to make some covers with this pattern out of fleece and knit on the wings. I just have a lot of ideas for these diapers. I'm so excited! I need school to get out so I can devote more attention to these instead of schoolwork. :) A couple of people have mentioned that I should sell these. :) Would you buy one? Maybe I'll think about it when I have more time.

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Sunday, April 18, 2010

Things have been pretty steady

Sorry it's been about a million years since I've posted! I've just been pretty bogged down with work getting so crazy (at last, the slow period between spring and summer break is here!) and my classes getting ready to end soon. I've just been a busy girl!

So where to begin...health-wise Blake has been about the same, still itchy and all, but I've noticed that lotion does help, so I've been trying to put that on him when he seems to get super itchy. And during baths and just after I've noticed that I have to put socks on his hands so he doesn't tear himself up. It's not that bad when he has clothes on, but as soon as they come off...watch out. Which I think is a little weird, but I guess whatever floats his boat. Also when i change his diaper his hands go straight down to his...erm..."junk" and just scratches the heck out of that area. :( So a lot of times I'll enlist in someone to hold his hands while I change his diaper, especially if it's a poopy diaper.

Oh! And Blake pulled himself up to standing on April 1st. Must have been his version of an April Fool's joke though, since he hasn't done it again. :( But he will stand if he can hold onto something...even though he doesn't always realize that he needs to hold on or else he'll fall over. So a lot of times, he'll hold on for a second, let go, balance for a millisecond, and then fall over and cry. He's thisclose to crawling. He crawled a couple of...um...idk what to call it, steps? last night on his knees finally. A lot of times he just either does the army crawl or does his little inch worm thing where he sticks his butt up in the air and then lays on his tummy, over and over. I just love his little arms! They're so muscular, probably from his army crawls. But yeah, baby boy definitely gets around! And he's still into absolutely everything.

Still no teeth to speak of. I started giving him biter biscuits to try to help his teething, which are okay until he gets a piece off into his mouth. After that he just gags and usually throws up a little bit. :( Even with mushy veggies, cheerios, anything he does that. Tonight I got some rice snack things (Baby Mum Mum, Vegetable flavor) and love them! They taste pretty good, and he thinks so too. :) They advertise no mess and easy to dissolve, and they're so right! The biter biscuits would be sooo messy, and these aren't. Plus they're individually wrapped (well, wrapped in twos), which is bad for the planet, but so convenient for throwing in the diaper bag. And he didn't gag on it! Well I take that back, he did once on a bigger piece he got off, BUT didn't throw up, and swallowed it! Yay! Maybe this could be his gateway swallowing food haha. But yeah, I'm sold!

Hmm, let's see, what else has happened in the past month. He went to the beach for the first time, but that wasn't anything too exciting. I made my first cloth diaper, and it turned out pretty cute I must say. :) I can't wait to make more, and I have so many ideas, but I think I need to be done with school before I jump into more of those, so I don't feel too guilty about putting in so much time into something that isn't school related (I've been slacking a LOT lately...not good!). My last final is May 1st, so after that! But yeah, I haven't uploaded the pics of that yet, so next post, I promise! I think that's about it. OH! I did buy some sweet pea seeds today to plant for my sweet pea. :) I don't feel I have the time this year to really jump into gardening full fledge, so maybe this can be my starter plant. Thanks to the afore mentioned Sabrina, I now know how to start them out. :) I love having friends with green thumbs!

Ray and I are still just amazing. It's safe to say I'm in love I believe. What's not to love? He's this awesomely sweet guy who cares for me AND Blake...oh he's just so great with Blake, I love watching them together. I don't want to get all mushy on this though about the sweet love story that just so happens to be my life at the moment, SO I'll just leave it at that. :D

And now it's picture time. Since I've been gone for so long, I'll leave you with a few pics of my beautiful babe. The second pic is the same as the third, but I cropped it so you could see him more in detail, since the smaller version just couldn't do the little man justice! A bigger version of the pic is best though, of course! It's such a cute pic, Jessica of Wonderlife Photography did such a good job!

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Monday, March 15, 2010

good news, less good news.

So a little while ago we got back the levels from his last blood test. His direct bilirubin is 5, which is awesome since in January it was 7.9. It's going down! I thought it was, but it's nice to see the numbers as proof. A little less than good news, his cholesterol level was 953. Normal is 100. It's not as high as some kids with AGS, but definitely higher than normal. No xanthomas still, so that's good. Hopefully it stays that way! I have noticed him itching though. :( Poor baby! It's not ruining his life yet or anything, but if his chest is uncovered, or his genitals or his legs, he just scratches away. I'm hoping it will soon get better rather than worse. Well of course I do, haha. Anyway, not only does he only have to go to Gainesville every three months, but now he only has to go to his pediatrician every month! We were going every two weeks. Finally, things are starting to slow down a bit. Now I just need to get physical therapy to rethink this weekly thing. :)

Blake LOVES solids now. It's so cute! He just gobbles them up. :) Which is cool, since someone told me that AGS kids a lot of times are on a liquid diet until they're ten years old! That's crazy! And he's trying so hard to crawl. He's been getting into the crawling position and rocking. So exciting! He's super mobile though, he's got his combat crawl down so well, and he's into absolutely everything, especially things that he should be, of course! Haha.

So in general things are just going really good. :) Besides the itching thing. It could be worse though. On top of that, things with Ray has been going great. :) I wish I didn't have to work so much, since I miss Blake so much. :( Hopefully that will get better soon too. We'll see. :)

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Monday, March 8, 2010

Things just keep getting better!

So we went to Gainesville today. The doctor said that he looks like he's getting even better, so yay! AND, we don't have to go back there for three months!!! Yay! And because of that, now we can go to Arkansas for spring break. :) We have some family up there who is dying to meet Mr. Blake!

It was so cute, at the doctors office he was being quite the charmer, and into everything. The nurse put the cuff on him to take his blood pressure, and he kept trying to grab at it. I was undressing him and he started playing with his socks. After he was weighed he flipped over and tried to get away. While waiting in the doctor's office he was making such cute noises to me and bouncing on my lap. In the middle of him doing that, he grabbed my face with both hands (not hard, just pretty much put his hands on either side of it), came in close, and started rubbing his nose on mine. I give him eskimo kisses all the time (and real ones too, of course!), so was that what he was doing? Or was just just messing around? Either way, it was just too cute and melted my heart! :D Then when the doctor was checking him out, Blake kept grabbing his sleeve and such. At Cracker Barrel (we ate there before hitting the road), while Mom was paying I was walking around the shop and this worker started cooing over how cute he was. And of course he flashed her a sweet smile and held onto her finger. He was just being so social today! I love it.

Then, once we got home, I was giving him some more diaper free time (I've been trying to do it once a day, as time permits), and he just suddenly got in the crawling position. Now last night he was kinda sleep crawling...like he was asleep, and his arms weren't really up in the position, but he legs/feet were and he was crawling around the bed. He does a lot of stuff when he sleeps, especially sleep talks haha. But anyway, so he just all of a sudden got into the crawling position and started rocking. I'm wondering meanwhile if he's just going to decide to crawl and take off haha. Instead he jumps. Like a frog. It was cute! I was telling my mom (who also witnessed it) that it would be funny if he just skipped crawling and hopped like a frog everywhere. Pretty sure he'll be crawling soon. He's getting around awesome, just scooting everywhere and doing his military crawls. It's so cute!

But that's about all I have for now. Here's a pic of diaper free time from the other day! :D "MOM! I'm naked!" Hehe.

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Tuesday, March 2, 2010

Just in the mood to blog :)

Not really much to report. Guess I missed his PT appointment today. Oops. I thought it was tomorrow. It wasn't. Oh well, I called to reschedule, played phone tag with the lady all day, and haven't done it yet. Not too worried about it, since Blake doesn't like them too much (no idea why) and I still don't think it's that necessary to do weekly.

So I'm seeing this new guy now btw, Ray. :) I like him a lot, so I'm hoping things continue to work out! I guess only time will tell, but so far so good. :) He's definitely the sweetest guy I've ever met.

Blake had sweet potatoes today, and liked them. :) What is it with orange foods? So far those are the main one's he's into. But at least he's getting into it, and that's all that matters. <3

He's trying SO hard to crawl. He will get on his knees and just stick his little butt up in the air haha. It's too cute! He's getting there. :) I'm ready for it to start warming up outside! I want to take him to Cherokee Park so bad! It's such a cute place, and very picturesque.

SPEAKING of picturesque, I got my new camera kinda figured out. :)

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Monday, March 1, 2010

Stress, go away. Please?

Man this has been a crazy week. Four midterms, not fun. Especially when I thought my English midterm was due the day after it actually was. So mad at myself, but it's only 15% of my grade, so I guess I've gotten over it. I'm ready for school to be done though. SO ready.

Also, sperm donor got in touch with me the other day. Guess he moved to CA, like I told him to a long time ago. Guess he finally listened. He says he's planning to give me a little money when I get a job. Which I guess is cool. But that doesn't make Blake anymore "his" son. He's always been mine. I forget often that I hadn't had him via immaculate conception. Blake looks like me and a mix of my family. I don't see Ryan in him at all. And if Ryan DOES start sending some money his way, would that make him more of a father? I shell out money for car insurance, but that doesn't make me a parent. Changing Blake's diapers does. Giving him baths does. Feeding him does. Losing so much sleep every night because he hasn't yet learned to sleep through the night does. Don't get me wrong, it definitely takes money to raise a baby. But I don't think only paying money (and only a little at that, I know I would still be paying most of his living costs) really makes you a parent. I'm half tempted to tell him to not worry about it and just pretend Blake never happened to him. Not sure he's agree to it or not though. Supposedly he's clean now and getting his stuff together. And maybe he is. But how am I supposed to believe him? I believed countless lies from him, and he really took advantage of my trusting nature and completely shattered it between us. I can't believe a thing he says. He's told me he's done with drugs so many times. Not sue I'm really willing to take the chance to find out. He asked to see him on his birthday. Does he even know when that is? It's not for half a year. I'm not sure what I'm doing on his birthday. Well, pretty sure I'm having a joint party with Sabrina and Stella, but even that I don't think is set in stone yet. I'm hoping time will tell me what I should do, if anything at all.

So I'm with this amazing guy named Ray now. :) He's a total sweetheart, and I like him a lot. We work together, and all I do all day is get teased about it, especially by the kitchen staff (he works in the kitchen for now). But it's okay, I can handle it. :) He makes me really happy. <3

Blake is getting so big. Well, to me he is. And he's getting more grown up. He's starting to throw fits. Isn't he a little young for this? Haha. Like I was trying to feed him carrots yesterday, and he kept trying to stick his hands in the jar. I kept moving it away so he couldn't, and that's when he lost it. He wouldn't eat or anything, just cried and cried and let me know he was MAD. It wasn't his pained cry, and after a while I just put the lid back on and let him do whatever, and he was fine again. He's I guess technically 7 months now? I'm not really sure. February is such an odd month. Especially since he was born on the 31st. Despite him getting mad over things, he's still such a sweetheart. :) He's still a cuddlebug, which makes me happy. He's sitting up pretty well now, even better than before. What he really loves to do is stand though. It's all he wants to do. If I put him in his crib and stand him up against the rail, he will grab onto it and just stand there. He looks so grown up just standing there by himself. He still doesn't crawl. He scoots like a champ though. He still gets where he's going, believe me! He will go all over the place, getting into thing, haha. Especially if it's something that he really shouldn't be into. That's his favorite. But I love that he's so curious about everything, and so smart. He catches on quick. If I show him how to do something (within reason), he pretty much figures it out the same day.

On Thursday I go to Alabama to get his genetics testing done. Not really excited. I never am excited for the little bit to get stuck. Can't they just stick me instead? And then shortly after that we get to go to Gainesville again. Fun fun! Except not. Oh well, it will be nice to get it over with!

Also, I got my new camera that's really good, so I should be able to have more pics of him soon. :) Well, nice pics. But I will leave you with a pic of him from Wonderlife Photography.

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Saturday, February 20, 2010

Life is pretty good. :)

Life with Blake has been pretty good lately. :) The only things I would change (besides obviously the Alagille's) is that I don't have to work as much (overtime. Blah.), school all the time, and the hellacious medical bills. I thought I'd have them all paid off, until I found one I forgot about that's a little over $5000. So I'm going to submit it to medicaid...again.

Anyway, Blake had carrots for the first time today. He was in love!!! He ate the whole jar of them. He's NEVER eaten that much before! It was so cute. :) He just devoured it. And my little piggy even downed an ounce of formula before crashing out. He's been asleep for a while now. He had a bath in between the carrots and the formula, so I guess he's pretty relaxed. :) He made a mess of it all though haha. There was orange everywhere! I'm glad he enjoyed it though. :)

Also, I got an order of fluff in today. I got some flip diaper covers (they came out with a lot of fun colors!), and I'm in love! I can't wait to try them. :) Most of the afternoon I've been playing around with them, checking out different ways to use them, etc. I SHOULD be doing homework...but this is more fun. :) And I still need to prep the hemp liners. Now I'm just waiting on my bum genius fitteds to come in (maybe tomorrow?), and I'll be set. :D And if I end up being in LOVE with the fitteds, I may buy more, since they're not making anymore, and they're getting rare. The ones I just bought were the last of what she had. So I need to act fast! Did I mention how excited I am? Who would've thought that I'd get so excited over diapers? :D

Wednesday, February 10, 2010

Some awesome news :)

So on Monday we went in for Blake's pre-op appointment. He was born with an inguinal hernia, and those rarely fix themselves, so it looked like Blake would need to have surgery to fix it. It used to bulge quite often, but it had been a few months since I had seen it do so (last time was Black Friday, in fact). Turns out that the doctor could only feel the hernia slightly and only when he was sat up. He decided that it wasn't necessary to do surgery on it, but if it started acting up again to come back. YAY! Maybe it is healing itself. It's possible, but just very rare. But as I've said before, Blake has a lot of rare things happen to him.

On a little more of an enh note, Blake's doctor in Gainesville wants him to be on extra vitamin D. So guess I'll add another medication to his daily (or so, I haven't gotten the meds yet so I don't know how often that is) regimen. My next three babies better not have to be on any medications!

I should be getting my tax return back on friday. So excited!!! There's so much I need to do with that money. Pay off medical bills that medicaid is being a pain about, buy him a cloth diaper stash (yaaaaaaaay), pay mom back some money I owe her, and I want to buy a nice dSLR camera. I have it picked out and everything. :D Same with his diapers. Oh I am so so sooo excited about the diapers. I want to order them now so badly! But at the moment I really shouldn't do that kind of spending, so I must hold back.

Other than those things, life has been pretty much the same. I'm still my usual stressed mess, overwhelmed by homework, work, and so many doctor appointments that I've lost track. Blake makes everything worth it though. If I could just get school over with, I would be a lot better. That's my main stressor. I'm just ready to be DONE. THe only problem is, after I'm done this semester I'll have my General AA degree, and then what? I mean, what next? I have no clue what I want to do! I just want to be a stay at home mommy honestly. That's all I want to do. I don't want to work. I don't mind cooking and cleaning and just taking care of the kids. I'm totally okay with that! That's all I want to do. ALL I want to do. I feel like I'm wasting my time in school. I mean, I guess I know I'm not, but really I can't get a job with my general AA. It's basically just there to say "yep, I've been to college." Awesome. I've thought about going for Early Childhood Education, but the average pay for that is only $12/hour and around here you can't even make that much. I don't really want to be a teacher anyway. I just don't know. There is nothing I really want to be that requires schooling. Maybe I should go work at a doctor's office. I've heard you get paid a good amount there. I don't know how to get about doing that though. Maybe I'll check out Craig's list. Anyway, now I'm pretty much just rambling. I'll leave you all with a picture of my beautiful baby boy. <3

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Thursday, February 4, 2010

Physical Therapy

So Blake went to his first physical therapy appointment today. His pediatrician I think just meant for it to be a one time thing to make sure he's on track, even though we weren't too worried about it. We've read that some kids with Alagille's syndrome have some developmental delays. Well he was tired through the appointment, so not really into sitting/rolling, etc. But he does it!!! They said they didn't see anything wrong though. And that they would like to see me weekly.

Um, WEEKLY? Why? They saw nothing wrong. I can understand maybe monthly to make sure nothing is behind again, but weekly? I really don't see a need for that, especially since they didn't see anything wrong. They said that they would be able to give me tools to help him sit up better (adjusted age he's only five months, and he's getting it) and roll more. I really wasn't worried about it. If he doesn't want to roll, he doesn't want to roll. He CAN roll, and I think that's all that should matter. I can stand on my tip toes and walk, but I don't want to, so I don't. Do I need to go to physical therapy for that? Weekly at that? I don't have time for weekly appointments! He's already seeing his pediatrician every two weeks, going to Gainesville every month, going to Pensacola for other random tests, etc. Not to mention that besides his a million and one doctor appointments, I also have five demanding online classes and lately I've been working five to six days a week. I didn't really want to spend every single day I have off at doctor appointments. I mean, I pretty much do now anyway, but still. I just think it's kind of absurd for my baby to go to physical therapy weekly when he doesn't have any problems.

Anyway, I was browsing through Sabrina's blogs that she is following, and I got so inspired! There are SO many things that I want to make! Now I just wish that I had time to do them! lol. I'm so fed up with being busy. What ever happened to being able to spend quality time with your family and making fun crafts, not worrying about deadlines for tests and papers and homework, worrying about money and work and missing your baby while away? There's just so much I want to do, just no time. :( I want to garden, I want to sew, I want to cloth diaper and eat home grown things, I want to get some chickens and eat fresh eggs, I want to decorate, want to just be able to take a nap with my son without feeling guilty that I should be doing schoolwork instead. Oh summer, where are you?

Wednesday, February 3, 2010

So excited!

I filed my taxes the other day, and this is my favorite tax season EVER! Haha. Did NOT expect this much back! I can pay off all his medical bills now (since medicaid hates me), pay my mom back from when she paid my insurance for three months (thanks!), and I'm also planning to buy him a new cloth diaper stash (since the gDiapers just aren't really working for him, I'm getting the Flip system. SO excited!!! Yay fluff!), a dSLR camera, and I plan to take Mom out to dinner as a thank you for watching Blake for free when I work (lately that's pretty much all the time). I'll still have a good bit left over to save, which will be nice. :)

Blake is just growing up so darn fast. He's just into everything! He grabs at everything, everything goes into his mouth, passes everything back and forth in his hands, etc. It's so cute just watching him play and experiment! He's so smart, and I've read that if babies are willing to explore, then they feel confident that the parent (or caregiver) cares for them and will come when he cries. So I'll take that as a sign that I'm doing something right. :D

I hope Blake starts taking to solids more now that he's six months old. I'm so ready for him to eat his food! He likes to play with it, but I would like for it to get to the point that food is replacing a bottle or so everyday. Especially since WIC has cut back his formula since he gets food now too to only six cans a month. I really don't want to have to pay for his formula, since for three cans together it's about $86. Ouch.

I'm really wanting to grow a garden. When Blake gets older, I think he would have fun helping mommy in the garden. It's so weird to me that I want to garden. I've always been the type that thought it was gross. I definitely do not have a green thumb, but maybe it would be different this time around. But, unfortunately, I'm pretty sure that Blacky (my sister's dog) would destroy it all, since it's normally what she does. I can't wait to move out, have my own yard to do with what I'd like, and to just have room for everything and be independent. I love the help I get here, but I'm looking to have a more natural way of life. I want to kind of get married, just so I can have financial support and not have to work, or at least work less. I've been so stressed out with five online classes (I hate online classes, but with all the trips to Gainesville, I don't think I could've taken normal classes), working five to six days a week, and trying to care for Blake. Blake is my main concern, and I wish I could just spend all of my days paying attention to him. Plus this house I'm in now is way too small for all of us. We have no room, it's always a big mess, and just everything needs work done to it. It's just really frustrating. I kinda wish mom would move out and find a nicer, bigger place, and let me rent this out from her. That way I'm pretty sure she would let me paint and all that jazz, and I would finally have room to do stuff. It would be a nice sized house for me and Blake, and if I met someone then him. I think I could make this house look a ton better, but that's just me. If I could just completely redo it, I bet it could look not too bad. But anyway, I don't see that happening anytime soon!

I'll leave you with a cute picture of Blake playing, sitting up, and of course, drooling!

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Thursday, January 28, 2010

Release

I really need to get some stuff off of my chest.

Last night I was searching for groups for Alagille's syndrome, just so I could talk with other parents about it, compare things, and just have support in general. I couldn't find any. Seeing that there aren't any online for it just makes me feel alone in the struggle. I don't know anyone who has this disease. No one. The doctor Blake sees in Gainesville said that he has only seen about ten patients with Alagille's syndrome, and Shand's is supposed to be the main hospital for the whole southeast. And that's all he's seen? That's crazy. I didn't think it was quite so rare. Does that mean that ther eare only about ten people in the southeast that have this disease? Or are a lot going elsewhere? I know Philadelphia has a hospital for Alagille's syndrome.

I'm trying to be brave, especially for him, but a small part of me is scared. Make that a big part. I'm pretty sure he'll be okay, but still. There's a 10% mortality rate that goes with this. Mortality. That word just sounds so grim. That's higher than I'd like. Everything that has happened to him has been uncommon. The two vessel cord had a small percent of happening. His toes not developing all the way had a small chance of happening. Alagille's syndrome had a small chance of happening. His HIDA scan didn't work, there was a small chance of that happening. Blake is the king of making rare occurrences happen. So that lowish mortality rate doesn't exactly make me feel better or put me at ease. Everytime I read that part when I'm reading up about it, my stomach churns. I have problems seeing Blake as a toddler, but can anyone really see that? I just hope it's not a premonition about the future. I had problems seeing myself holding a baby girl when I was pregnant and didn't yet know the gender. I didn't really want to believe it, so I pushed it aside, but it came true. I hope this isn't that type of thing. I don't think I could function if I lost him; I would be lost. He is the absolute love of my life, and I would literally kill for him if I had to. He's made me into such a strong person, I think. Can you be strong and still be scared? People always tell me that it'll be okay and it'll be nothing. I don't think they realize that this won't go away, he'll have it his whole life. There is no cure. Blake will have a life full of doctors appointments and tests, and I'm so sorry for that. I know it could be worse, and I'm very thankful that it's not, but still I miss the early days when I didn't have to bother with at least three doses of medicines a day. I know it's not my fault that this happened, but it's really hard to not think in the very back of my head, "what can I do better next time around to prevent this?" The answer is nothing. If I don't carry the gene, then I most likely won't have another kid with this, unless my next partner has it. I hope not.

In my search for groups, I came across this group of moms whose babies were diagnosed in utero with fatal diseases and they decided to carry to term. It was so sad. I was crying while reading all of their stories. Most stories were of their babies clinging to life for an hour or so before "growing their wings." Some less, some more. This one woman had to have a c section, and she said that it was the hardest thing to do because not only was she choosing her daughter's birthday, but also the day she died. I can't even imagine. i remember that there was a time or two that I was scared that Blake wasn't gong to make it. We didn't know what to expect when he was born, would he be able to breathe, would he need immediate surgery, etc. It was a horrible, horrible feeling just thinking about him possibly not making it. But to know that your baby won't make it. To know that your angel wouldn't make it to the first year, the first week, even the first hour of life. It's so unfair. Then to decide to carry it to term or to decide to terminate it then. That would be so hard and I hope to never ever be in that situation. And then for next time, being terrified that it will happen again. Having to go through all of that grief again. I don't know if I could handle it. i think if given the choice, I would carry to term. As one mom put it, I would want to give the baby a chance to take a breath, open his or her eyes, before leaving. But I would never want to deliver. That would be the hardest part, the labor of such a delivery, knowing that you are slowly killing your baby. Again, I hope to never be in such a situation. I hope I die before any of my children.

Sometimes I do feel alone. I feel like I have to be strong for everyone. I am a calm person, and in general I handle it well. But I feel like I can never just break down for a while without people telling me it will be okay. I know it will be, but I just want to put my worries out there and get them off my chest. Just for some one to listen, I don't really need advices.

Also, if one more person tries to tell me that I'm too young to be a mom and that it's hard, I think I'm going to scream. Just because I'm young does NOT mean that I'm a bad mom. Age is just a number. I'm not even that young. I've been an adult for a while. I'm not even a teenager. I have a job, and the only thing the government pays for is his formula and his doctor visits, which I put into the system through taxes anyway. Do not try to tell me how hard being a parent is. I think I might know. Don't tell me that I don't really know. You have no idea what I've been through. I can promise you its more in his first six months of life and even prenatally than what their kids have been through (the ones who tell me this). And just because its hard doesn't mean that I would even thing about trading it for the world. I love being a mom, and I've always wanted to be a mom. I get that lecture way too often, and I'm just sick of it.


Anyway, on a much brighter note, Blake sat up for the first time today unsupported for a while!!! Yay! :D Growing up so fast. <3

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