Thursday, December 15, 2011

Money and its trouble

So my last post was all about keeping my new found outlook on things. Well....I actually am keeping it! Right now, we are totally broke, and have no money. So this would typically be a time when I would start getting upset. But to be perfectly honest, their aint shit all I can do about this. Payday is the 23rd, we will have to wait til then. Im totally surprised that I am doing this. We will see if after a week and a half of literally spending NO money, I keep my outlook. I wont be able to take the girls out to McDonalds or anything, and Im going to have to be very creative figuring out food here in this house as the days progress. And this is all happening at Christmas time! I have no money to buy gifts for any of my family, nor anything for my Husband. We were able to get the kids their Christmas gifts, so Im very happy about that. As long as their happy Im happy.

But you know, if I allow myself to think about the whole no money thing...it starts to wear on me. Its like I build up a wall against it and as things get difficult, because I cant take the kids out anywhere, so they are stuck at home, playing inside or outside, they start to get restless. I know, kinda sounds weird, they get to go outside, why would they get crazy? Because my kids are social. They like to go to McDonalds and play in the play area. They like to go to Walmart and see all the people. In our neighborhood, there is not really any kids the girls age who play outside. So yeah, after a few days, they will start getting insane. And Ill start to feel the pressure.

I wonder if I can keep this up. I really hope I can. I will be trying very hard to. Ive got alot of cleaning planned, so thatll keep me busy. Sometimes I feel like when I try to 'occupy' myself, its like shoving the emotions down and it only makes it worse. But I dont know what else to do. Cant go get some retail therapy, that takes money. I will pray for the strength to keep myself from breaking.

Im learning that life never really goes the way you want it to. And in most of the cases, you really cant even control your life. You can control how you react to the things life throws at you though. So heres hoping I react the RIGHT way......

Monday, December 5, 2011

Heres hoping I keep this outlook.......

I havent blogged in awhile. Guess I really had nothing to say. Actually more like I chose to keep my mouth shut for awhile. And at this point, I am actually ok. Im not any more stressed than I am any other day.

Alexandra had a Heart Cath on Nov 18th, and everything looked good according to her Cardio. Great news! My sister was kind of upset, as at this point there really isnt anything they can do to make her sats better. Just time, time to see if those evil AVMs get any better. I think about the future, and what it means for her when shes 10 or 15, and how she will feel physically at sats in the low 80s to high 70s. Will she get winded walking down the hallway? Who knows.

I think over the past few months, Ive actually grown up a bit. Ok now Im hoping this isnt all a joke, because its finally cooler outside, and the heat here in Arizona just makes me miserable. Im hoping to retain my newfound outlook as the warmer months approach. Heres hoping.

Theres been alot of talk with our Heterotaxy kids/CHD kiddos about making the right decisions for them. Its forced me to rethink the decisions, the life and death decisions, Ive made for Alexandra. But you know.....I dont really think Id change anything. I think I did the best I could with the knowledge I had at the time. And shes alive. Shes 4 and thriving! Can I really ask for more? No. Shes alive. Thats all I really wanted.

I also am learning not to be as scared. Not to be so scared to lose her. Now of course this is something I dont ever want to happen, but its okay to look at the odds and say "um yeah, so yep she may not live to be 50 or hell, not even 20". But the fact remains, she will be with me always. I know that if she happens to pass before me, she will be there waiting for me, with that toothy smile of hers. (I hope its a more grown up version of the toothy smile of Alexandra)

Ive been blessed. Twice over with my girls. I dont know what tomorrow holds. No one does. But I can trust that whatever God has planned for me it will be for the best.

At the park with the girls the other day, another Mom and I were chatting about our kids, etc, so I was telling her all about everything Alexandra has been through. She says this to me.......

"In the end, everything ends up ok. So if everythings not okay, then its not the end so keep trying."

Couldnt have said it better myself.

Monday, October 3, 2011

When you stare this is how I feel....

I just need to get this out....

I feel like a failure. I am a failure at potty training. Ive tried to potty train Alexandra. But shes not very 'into' it. Alexandra has a very active mind. She doesnt stop. I have had 2 psychologists and 1 psychiatrist tell me she will most likely be given a diagnosis of ADHD.

In Baskin Robbins tonight, I had this other Mother give me the worst look Ive ever had, because Alexandra asked me to change her diaper. I feel so ashamed. Heres the issue, whenever in the past I have forced Alexandra to do something, it always ends up in her shutting down and she becomes non responsive. For instance with the eating, I kept forcing, she kept refusing. With the potty training I kept introducing it, and putting her on the potty throughout the day, but she would wait until she had a diaper back on and then do her stuff. I had a talk with her about what the feeling feels like when she needs to go, and to let me know, and I can help her get on the potty, but she can only tell me after shes gone.

So Im a failure. Because I cannot deal with 1 more damn thing that I have to do. Im done. I dont have the mental strength to play her mind games to get her to do something. I always have to trick her into it. Potty training has to be something she wants for herself. She could give a rats ass less about it. Shes just fine to poop her pants and then tell me Mommy change my diaper. Heck since the G Tube, most of the time now she doesnt even tell me she pooped and she just waits til I smell it.

Alexandra has what I like to call her 'isms'. Her quirks, idiocracies, and her all around insane nature. Shes very excitable, and well at some times it can be downright annoying. She cannot sit still. And I know youre thinking well what 4 yr old can.....no if you spend time with her, this is not normal 4 year old behavior. Its a constant dialogue of her pretending to be Mater, or Lightning McQueen, etc. Its insanity. I cant figure out when I would have the time to sit and potty train her, it takes me an hour to get her to eat. Then I have to clean up the mess she makes. If I sit her on the potty she wants to play with the toliet paper. I take the toilet paper away then she screams and hollers cause she has to have something to play with. She thinks sitting on the potty is the time to read. She wont go, she will just sit there and pretend Mater is in the room with her. She has absolutely no ability to focus.

So Im just tired. Thats why I sent her to school. Cause I cant take much more. Im exhausted. I have no clue how to potty train her. I cant even figure out how to potty train Aria cause she follows suit with her sister and then plays in the toliet water instead of doing what she needs to.

Im a total failure. I try to psyche myself up and say "Oh Im going to get up early and get myself all ready before the kids wake up and Ill just be ready to get all this shit done, and Im gonna be perfect Mom".

I am so angry. At everything. At everyone. I feel alone. What am I to do? I cant figure out anything. I spend days telling myself its all okay, just take it one step at a time. And then I go to sleep at night, have some insanely vivid dream, and wake up still hanging on to those emotions I had in the dream. I feel like Im torn between 2 worlds. I feel like Im going insane. How did this happen? How did I get here?

So yeah, my 4 yr old isnt potty trained, neither is my 3 yr old. Cause I cant figure out when I would have the time to do it. Cause Im too busy trying to keep Alexandra on task with everything else, like making sure shes drinking or eating. Oh sheesh, fuck it. Im going to go clean the bathrooms.

I hate my life. I said it. I hate it.

Thursday, September 8, 2011

Whats going on with me?

Im not sure whats going on with me. I am always exhausted. And I sleep plenty. I sleep like 10 hrs a night. When I can I take a nap in the afternoon. I fall asleep so well at naptime that I actually dream. I just cannot figure out what is wrong with me. And then theres the constant intestinal upset. I have painful intestinal movements everyday.....almost like unstoppable. It can happen with anything I eat. Or nothing. Ive ate nothing and it happens. The weird thing is I sweat constantly. From the minute I wake up til I go to sleep, even when I sleep. For some reason though as soon as the weather cools down....the intestinal upset stops, and the sweating isnt as profuse. Could I be allergic to the heat?!?!?!?!?!?!?!?!?! This kind of seasonal thing has been happening for the past 2 years. I thought once I had my gallbladder removed it would get better, but it didnt. This winter though, my stomach still had issues just not as frequent as during the summer. Im tired of living in fear of being out somewhere with the girls and not be able to control my bowels....cause seriously....when it happens, I cannot control them. 

Ive tried the whole mind over matter, you know just keep putting one foot in front of the other. But it doesnt stop how insanely tired I am. I get a headache that borders on migraine everyday. I seriously need to get my ass to the doctor. Heres the problem.....my husband really needs to go as well. And I feel if I go before him, he will think I dont care. I feel like I can work through these issues, but it really hinders his ability to live well. I think its the reason we arent intimate anymore. He just cant, he is in too much pain from the fibro or whatever he has, but he has never had diagnosed. Everytime we make an appt for him, something comes up and we dont have the money to pay the copay. Yeah thats just how bad it is.....no money to pay the 25 buck copay. We pay for insurance we cant even use because we cant pay the copay. Its just there in case something really bad happens. 

Ugh, Im tired of living like this. Im trying to get a hold of myself. I take it one day at a time. But I seriously need to see a doctor.

Thursday, September 1, 2011

Bad Mommy.....

Wow, so I feel like a bad Mom tonight.

Heres what Ive witnessed myself thinking over the past 2 weeks since Alexandra started school.

1) Alexandra is mean.
2) I hate being around her.
3) She makes everything harder.
4) She is so hard to get along with.
5) She doesnt listen.
6) She does whatever she wants when she wants.

Yeah, go on call me an asshole. Cause I am one. But Im only human. She is so difficult it makes me want to pull my hair out. She screams and yells at me, throws things at me. I understand she has been through so much, I do. But in those moments when she is yelling or screaming.....I dont think about her condition, I think "what an ungrateful child". Lord forgive me. Seriously. Forgive me Lord.

Today while Alexandra was at school, Aria and I went to the lab to take Alexandra's stool samples in and then take a trip to Walmart. After the lab, I asked her if she would like to go to QT and get a drink, this is how she replies "oh yes Mommy that would be great, thank you". I take Aria to QT, she asks for one of the Icee drinks, so I get her one, and this is how she replies when I hand it to her "Mommy, thanks for my blue drink, its yummy". We pay, I get her back in the car, and while she climbs in, I hold her drink for her. When she gets all in and I hand her the drink back she says "thanks for holding my drink Mommy". We go to Walmart, and its a pleasure. We were looking around for some new sheets for everyone in the house, and I pull them off the shelves and she says 'Mommy thats beautiful". So pleasant. Not yelling at me saying "MOMMY I WANT TO GO TO THE TOYS". When I asked her to pick out her sheets, she picked out a simple pink circle pattern, and she says to me "oh Mommy, I love them, thank you!". So sweet.

So Im an ass. Yeah because I like spending time with Aria more than I like spending time with Alexandra. Cause its just easier. If Aria is hungry, she will say "Mommy Im hungry can we get something to eat". I wont have to feed her when I get her something to eat, she will do it herself. I dont have to sit there and constantly remind her to stay focused on eating, she eats because she knows the faster she eats, the faster she can go play. If we dont have the money to eat out Aria wont yell at me and demand I take her to Taco Bell or Chick Fil A, she will say "Mommy, can you make me pizza then at home?".

Im a total effing asshole. Cause I like Aria more than I like Alexandra. I love them both, I would die for them both. But Id rather be friends with Aria, cause shes just plain old nice.

Lord please forgive me. I know Alexandra cannot control whats happened to her. I know she is the way she is because of her condition. Because of that world of CHD she lives in. And you wanna know who Im pissed at for that, Im pissed at you God. You let it happen. You dropped the ball. How could you? How could you do this to my baby? How could you allow it? Shes innocent. She shouldve been given a clean slate with which to make her life out of. Not this crap of 5 open heart surgeries, and the g tube and everything. You allowed it.

Go on and judge me, cause I know you will.

And thats all I have to say about that.

Monday, August 22, 2011

You never know how things are behind closed doors....the fork in the road.

My marriage has quite probably hit a fork in the road.

For the last 4 years, we have let Alexandra's condition rule our lives. It was hard not to. I dont blame either one of us for letting it happen, shes our child. But in doing so, we lost ourselves, and our almost our marriage. Almost. We can save it.....if we can communicate.

I know that Im pretty emotional, even though Im pretty sure, he thinks Im emotionally unavailable to him at this point. And I am unavailable to him. I gave Alexandra my life, my will to live, because I couldnt allow her not to live, because that would surely kill me. In doing this.....I destroyed myself.

So where do we go from here? Shes starting school tomorrow. I dont even know where to begin to help our relationship. I know that there are things I need to let him know that bother me.....but I dont want to hurt his feelings.

I dont even know why Im writing this.

You never know how things are behind closed doors.

My marriage hangs upon a huge cliff. If we cant figure this out.....this marriage is doomed for death. He must listen to me, and I must listen to him, without getting defensive and justifying our actions. We have been using the circumstances as the excuse for not giving each other the time we needed. Its time to stop that.

You never know how things are behind closed doors.

I hate the life I live everyday. I didnt choose this. I was chosen for this. I feel as if I am prisoner to it. Those are my natural human emotions.....and I will not feel bad for them.

I can change this. I can change the way I react. But in this change, I must have my partner join me. If he wont, then its doomed to fail.

You never know how things are behind closed doors.

Somewhere down the road, I made a decision. A decision not to respect my Husband. And I know why....cause he wasnt a provider. He wasnt motivated to make anything more out of himself. He was holding on to anger from his childhood, and using that as his excuse. So I had to provide....even though I wanted to....I created resentment of him because he didnt want anything else for himself. And then Alexandra was born. He said things that I will never forget about when she first came home. He couldnt take care of her. He was afraid. She couldnt go to daycare, I had no family that could watch her....so I had to stop working. We had to go on food stamps, cause his job didnt pay enough. More resentment....even though neither one of us chose to have a daughter with CHD. I know I was wrong for the resentment. Im getting out now, so I can let it go. Because at this point, even though he has made leaps and bounds in providing for his family......I still hold onto those resentments, because I feel so helpless in Alexandra's condtion.

I must learn to respect him. But I need for him to understand some of the things I hope for. We must both make this change.

We stand at the fork in the road.


Thursday, August 11, 2011

My Experiment

I mightve reached the bottom. I have no energy, no will to fight. Im trying to tell myself Im conducting an 'experiment'. But the fact of the matter is.....I just dont wanna fight. I dont want to put food in front of her only for her not to eat it. So Ive been waiting....waiting til she asks me for food. After her not asking for anything, by 1130, I was asking her. She kept saying No. At 2, she finally said yes, she wanted food. So I asked her what she wanted......turkey and pretzels. So I gave her a few slices of turkey lunch meat, and some pretzels. I didnt force her, I didnt even sit with her as she ate. I left it completely up to her. Wanna know what she ate? 4 bites of the turkey and about 5 pretzel sticks. The equivalent of like 60 calories. Shes drank maybe 6 ounces of fluid today.....not enough.

So after today my experiment will be finished. And I will have concrete proof that she does not ask for food. She doesnt even ask for something to drink, and its 110 degrees outside. As I have always known, if I didnt continually make her eat and drink, she wont. So, perhaps until things get situated with some feeding therapy, Ill have to continue to 'make' her eat. This sucks. Im sorry it does.

What do I do? Just continue this. Just feed her through the tube?!?!?! Im so confused and exhausted. Part of me feels like I did the wrong thing getting the g tube, but I have seen her gain more weight in the first month than she has in the past year. How do I juggle it all? God give me some guidance cause Im truly lost.

I never thought my life would end up here. And maybe in some ways, I mourn the loss of the life I used to have. The freedom and the idea of it. I had this very romantic idea of Motherhood. You know, holding your baby, and breastfeeding, and feeling that joy. Instead, I was getting up close and personal with a machine that pumped my breastmilk, and standing over a hospital bed. And  I knew before she was born, but you never really know until youre in it. Ive learned so many wonderful things, but I have witnessed misery, unstoppable misery.

I dont even recognise my marriage anymore. We are like 2 ships passing in the night. We are just passengers along for the ride. Neither one of us is the driver. Alexandra is the driver.....and shes 4. Wanna go for a ride? This isnt for the faint of heart......

Monday, August 8, 2011

Im tired. Really tired.

Im tired. Really tired. Im tired of fighting. Im tired of the insane amount of doctors appts, and then having to come home and cook and clean and then work also. Im tired of not being able to enjoy anything.

Her INR was 2.2 today, which is great cause its where we need it to be. And I know why it was in range, because I havent given her any formula feeds during the day for about a week. Cause I dont want to. Cause I dont want to spend every hour bolusing her 4 ounces. I have too much crap to keep up here in the house. I effing sweep the kitchen floor 4 times a day cause the kids make a mess each time they eat or have a snack. For the past 2 days I have been picking up pom pom strands off the floor in every room of this house. Washing the sheets everyday because of all the diuretics and she pees the bed every night from it. Im just tired.

I feel like maybe some of her doctors dropped the ball on her. Why werent we in feeding therapy a long time ago? Now we have to fight twice as hard cause the damage has already been done in her mind when it comes to food. Cause I had to fight, and yell to get her to eat. But she was so big at birth.....THAT WAS ME! She had nothing to do with being 9lbs 9 ounces. I did that. I ate so she ate. I ate cause thats what they told me to do, Pearl wanted a BIG baby to work on. She has never ate on her own. I still feed a 4 yr old. Yesterday I was at McDonalds with the girls and this mexican lady kept staring at me cause I was feeding Alexandra. I was happy cause whenever I put the food up to her mouth she would take a bite. But this lady annoyed me. No I shouldnt have to feed a 4 yr old. BUT I DO because I dont know what else to do. If I left it up to her, she wouldnt eat.

Today on the way home from the INR check, she says to me Mommy "Im hungry, can we get french fries at Wendys" I said "No, Mommy doesnt have alot of money, and we have plenty of food at home".....you know what she does, she starts to yell at me cause I wont take her to Wendys. If I had the money I would take her to Wendys. But even when I do, she wont eat it. So why waste the money.

Also, her Captopril prescription was written wrong for 3mL twice a day, and it should be 3 times a day. So I called up the nurse for Graziano at CRS, and left a message and set the phone down cause Alexandra was playing in the yogurt I gave her, and I lost it. I yelled, I even sweared. And then I realized that I didnt hang up the phone. Now shell call CPS on me. I just cannot understand why shes yelling at me for food, but when I give it to her, all she does is play. WHY?!?!?!?!

Im just tired. Im tired of being pulled in so many directions, with no end in sight. Her pediatrician even acts like they dont want to take care of her anymore. I have to tell them what to do, and I dont want to. Im just her Mom. I wanna just be her Mom, not the person who has to rehabilitate her from her condition.

I know this feeling will pass, and Ill be back to the normal stuff again. I just was so frustrated and needed to vent.

So all she has ate so far today was some yogurt.....oh well.....


Friday, July 15, 2011

Knowledge

Ive been watching this awesome show, that unfortunately got cancelled. Camelot, it aired on Stars. Wonderful show. Sex, power, magic, you name it, it was in this show. But more than anything a particular theme came out of this show. It was loss of innocence, loss of grace. And with losing these virtues, the characters learned knowledge. But what they found is that power is not gained by knowledge, pain is. I felt like this echoed in my life so definitively. With the addition of Alexandra to my life, I have gained wealths of knowledge, but with this knowledge has come more intense emotional and mental pain than I ever thought could exist. I have witnessed the miracle of her continued survival, but at a very large cost. I have lost the innocence of ignorance. I am no longer naive, but world weary and tired. But also I have learned to laugh at the little things that used to send me up a tree. With each seemingly negative piece of knowledge, I have learned something comical, and wise.

I have said it before, but this journey is not just for Alexandra. It is for me as well. I dont know where this journey is going to take me, but I dont think thats what really matters. The journey is what matters and what we learn from each obstacle we overcome.

I will never be happy go lucky, I will always see the darker side of things. I dont think most people know that I can see those darker things but still laugh at them. I know where the final destination is for this journey, for Alexandra and for myself. But I will enjoy the ride.....even the difficult parts.

Monday, June 20, 2011

Heart Hurts

My Heart kinda hurts this afternoon. I got great news from the docs this morning, but still my heart hurts. Spending all your days and nights in the hospital can make you very restless. I hate having to subject Alexandra to all these tests. But I have to. I have to get her to where she is relatively healthy. She wont eat, so shes getting a g tube. I miss my home. I miss my bed. I miss my Aria. I miss my Husband. I miss everything. These lonely afternoon hours spent in the hospital can be brutal. Alexandra is just miserable. Shes getting happier each day but she hates it here. Because she cant be free. So Im going to sit here while she sleeps and just hurt a little. This is so not easy. This is the hardest thing I have ever had to do. I am so humbled by this world.

Friday, June 10, 2011

Its not my Fault

Ive felt powerless today. Like I have no control over anything. And I dont. I have no control over CHD. All I can do is fight, but CHD is going to do what CHD is going to do to my daughter. I have to live with that. I spent a majority of the day in a total funk, brought on by my sister who is a 23 year old lazy girl. Ive had some deep thinking sessions with myself lately. Ive been thinking alot, cause Im so tired of running. I cant run from the past anymore, I have to deal with it.

There are things that have happened in my life that have set me on this path. I cant help but think that if some people didnt act so careless and so lazy that maybe I wouldnt have had to set out on this path. But I have no control over anyone but myself.

I have been taught from a young age that it was 'my fault'. Didnt matter if it was who spilled the milk, or who wouldnt get their lazy ass out of bed to get themselves to summer school so they didnt fail a grade. It was MY FAULT. But its not. I dont fault the people who love me for this. But I needed to identify this so that I can get over this myself. We all make mistakes. No one is perfect.

Its not my fault. I was doing what I should have been doing. But I payed the price for her insolence. And it has put me in the situation I am in now. I have payed a heavy price of burden and much worry. But the reward, is so great. I have been able to become a part of a community that is near and dear to me. I have learned things that amaze me.

So I forgive. And I let it go. Its the only thing I can do.

Wednesday, May 25, 2011

What CHD has done to my Mind.....and my Marriage

So yep CHD sucks. I cannot even describe for those of who dont know what its like, what its like. It makes me speechless. I am so damn pissed. I am sick and tired of fighting. I am tired of fighting for every little bite of food that goes in her mouth. I am tired of fighting the fear she has, and all the panic and anxiety she has that has been caused by everything she has had to endure. CHD has ruined my Marriage. My Husband is too tired to kiss me let alone be intimate with me. We dont even talk to one another anymore. I cant remember the last time the man kissed me. I am fucking sick of CHD. I am so angry there is no words to describe the anger. It shakes my soul. She wont sleep at night, she screams for hours. I am suffocating under the weight of CHD. I fucking need some help, and cannot afford to get it. Im tired of being strong. Im tired of 'hanging in there'. Shit Im tired of telling my fellow Heart Moms to hang in there. I would rather tell them to scream and holler and stop stuffing it down. Im sick and tired of being sick and tired. Fuck you CHD. You nasty, murderous disease. You have ruined everything I have ever wanted for myself. Tainted everything I do. Im miserable. There I said it. I hate everything.

CHD has created a wall between my Husband and I that Im beginning to think is unbreakable. I fucking hate my life. It sucks. Its mindless, unproductive bullshit. I keep trying and keep trying. Im so damn tired. I need a drug induced coma. I have no clue what I am learning from this situation other than misery. And dont fucking tell me, well you cant control what happens to you, but you can control the way you react. Oh fuck that shit. Im pissed and Im going to say it. CHD you ruined my life. You have almost killed my daughter several times. You have caused her enormous amounts of pain and agony. I will never 'accept' you as life. This isnt living. This is misery. I havent learned anything useful, other than to be able to laugh to cover up the intense emotional pain.

So CHD sucks. And my life does too. Im tired of the endless cycle. I cannot win against CHD. Its become bigger than me. 4 years into this and I am so shattered I cant remember my own name sometimes. Im going to bed. Fuck you CHD.

Monday, May 23, 2011

Turning Misery Into Numbness

So I swear.....I'm really going to figure out how to stuff it down this time. I've been out of control for, shit, almost 4 years now. If I can figure out how to stuff it down, perhaps the last little bit of me that is miserable will just stop feeling the miserable. And then I'll just be, well Alexandra and Aria's Mommy. Which I guess in the end is fine. I did have some things I wanted to accomplish for myself. I really wanted to go back to school to become a nurse. I feel like I have a lot to offer the field of nursing. But alas, as the saying goes....Life happens while youre busy making other plans. And me being out of control is hard for my family. I guess I just couldnt ever accept Alexandra's condition. I cant just say, "oh this is life". Cause I feel like this life is an extraordinarily hard one. So perhaps the answer is not 'accepting' her condition. Its just learning to feel nothing toward it. No anger, no hurt, no nothing. Just deal with it as it comes and stop the constant worry. But I do believe I know myself pretty good, and to get myself not to worry, Im going to have to accomplish some state of numbness. Its going to change me. Sure, how could a state of numbness not change a person. So, you may find Im quieter. I wont be my normal crazy self. Ill just be hanging out. Making sure the kids dont run into traffic or burn themselves alive. Ill be busy sweeping the kitchen floor 3 times a day, and doing copious amounts of laundry. So I probably wont have any witty or funny things to say about this hell called 'Motherhood' anymore. The premise for this blog will then become mute. Cause how can life be hard, when you cant feel the things life throws at you anymore. I will feel some emotions....I will still love my children, I will still love my Husband, my family, and my friends, and all my fellow Heart Moms. I just wont be fighting it anymore. Im going to give in to the miserable, and let it make me numb. I think this is a great opportunity to teach myself how to keep my big effing mouth shut. This is going to be a fantastic journey. Im not going to be the extrovert I once was anymore. Illl be the chick in the back of the Chick Fil A with the frizzy hair, the children running around and the look on her face of "who am I and how did I get here?" Look for me Ill be hard to miss.......

Sunday, May 8, 2011

Mother's Day....in the hospital....

I didnt really envision us in the hospital on Mother's Day. This being the first Mom's Day that my kiddos can really understand what the day is about. But its okay nonetheless. No gifts, but havent I already recieved my gifts? My gifts are my 2 wonderful daughters. Alexandra, my oldest baby, my complicated one. Aria, my forever baby, my lively one. What would I be without you? Not much. Yes, I was someone before I became a Mother. But now I am so much more. My children have taught me many priceless lessons. I never in my life thought I would have a child that needs constant medical attention. It just never crossed my mind, but does that ever cross anyones mind when they find out theyre pregnant? I didnt look up at God and say "HEY! Give me a kiddo with a heart defect!". Hell, I wouldnt wish this on my worst enemy. But obviously God saw enough in me to give me Alexandra. Then he blessed me with the delight that is my Aria. So much spunk and energy. If I could bottle her energy and sell it, Id be a millionaire. She is full of life, and love. God brought Aria to us not only for me, but for Alexandra, for her forever friend. I am so very proud of my daughters.

Now, Im not perfect, and I have days when I want to get in the car, drive away and never come back. Kids can do that to you. I wouldnt say that everything is a-okay, cause its not. But Im learning to roll with the punches. Doesnt mean Im not going to shake my fist at the world and cuss. Cause well, thats me. I swear. Doesnt mean Im going to hell.

This is my life, and other than having more money.....I wouldnt have it any other way.

Wednesday, April 27, 2011

Some things I will never know....but I think I can live with that.

Some things I will never know.......like as in why? Or how to do quadratic equations. Or how to perform brain surgery. And I really dont care to know those things. All I know is I spend each day trying my best. I try to be the best Mom, the best Wife, the best me I can be. I am human, I make mistakes. I get angry, I get upset. Sometimes I shake my fist at the world and cry. Because life isnt fair. I never expected it to be, but that doesnt mean I cant make a little stink when it doesnt go my way. Ive learned alot in the past almost 4 yrs. So much about myself. How far my limit is for example. Which is much higher than I ever thought it could be. Ive learned how much I could love another human being. Ive felt the most dark and disturbing emotions at one moment and then at another moment to feel like I have touched God. Im living life. No Im not perfect, and I dont want to be. Im going to be a Mommy to my beautiful girls. To love and cherish each moment with them as it was my last. Ive learned that there is some childrens TV that is so annoying it makes me want to bang my head against a wall.

I wish I had some deep dark secret to disclose, like some kind of  important tidbit about how to get the most out of life. But the honest to God truth is, just live it. Dont expect it to be roses all the time. Dont expect it to be bad all the time either. Just take it as it comes.

So Im going to try and take it easy, and just live. Cause after almost losing my daughter last Wednesday, I cannot imagine not enjoying every minute with her. With my Aria and my Alexandra. The 2 halves of my heart. The culmination of everything I have wanted to be. Their Mommy.

Friday, April 1, 2011

Stay at home Moms - Recipe for Boredom

Its been almost 4 years Ive been a stay at home Mom. I work, 2 days a week. But Im bored. I know why Im miserable all the time. Boredom.I dont know how in the hell to change it. Ive tried playing with the girls more, running around in the backyard with them, all to no avail. I am just not a 'player'. I try to clean things, but theres only so much cleaning you can do that keeps your mind occupied. Ive been going in circles for the past 4 years. Nothing changes, I am not growing. I am not changing. Im just surviving. I take damn good care of my kids. They are loved and cherished. Why cant I learn to just let it all go and not think about how bored I am. Im so frustrated. Im miserable because Im bored. Fun stuff. NOT!

I dont really care what other people think. But I hate this gig. And Im stuck now. I mean everything happens for a reason but I just hate this. Oh well. Cry me a river, and Ill buy you a boat. Eff it all. Here's to another day of incessantly saying No, and wanting to bang my head against a wall.

Thursday, March 10, 2011

Idle Hands are the Devils Playground

So I have these days. These days of absolute boredom. I dont know what my problem is. Today, while in the backyard watching the kids playing, I realized Im bored. And that is why I am miserable most of the time. I am simply bored. Its not that taking care of the kids is boring, well it is, but no, I mean Im constantly doing things. Cleaning, or picking up a mess, or changing a diaper, or whatever. But its boring. Its the same shit different day. Its not a wonder when I fall asleep at night that I have crazy ass dreams. My sub conscious is bored too. What can I do about this? I thought about some hobbies......but would that make me feel less bored? I used to read alot, but lately I cant seem to get into it. And alot of the times when I was an avid reader, my dreams would be even more intense as my brain had so much to play with. My mind is a deep and weird place. I try to write this blog sometimes. Maybe I should do some needlepoint or something. HAHA I am so not a crafty person. Going back to school is out of the question for at least another year. So I sit here day after day, and I mean I do stuff. I play with the kids, I feed them. I make the beds, I scrub the toilets. But there is no direction. People who think being a stay at home Mom is so nice are crazy. Im bored out of my mind. But going back to work full time isnt an option, daycare is just too darn expensive. Also at this point, after being with her Mother for her entire life so far, Im not sure Alexandra would do well in a situation like that. I worry about her overall health. Who knows? All I can say is, Ive got no effing clue. Im completely dumbfounded. Where do I go from this place? The path eludes me. Im sure I just need to be patient. And recognizing the problem is half the battle. I know what it is. Its boredom. Idle hands are the devils play ground. The line between reality and fantasy in my mind sometimes gets very blurry. I can wake up from a dream and almost feel like what is real is not, and what was in the dream was the real reality. Its all Matrixy.I think I took the wrong pill, I fell farther into the rabbit hole from sheer need of something exciting. Ive got one hell of an imagination. In my dreams Im fighting demons, and ghost hunting with the GA Crew.  I took a Soma, 2 'goof balls' (tylenol PMs), and my prozac tonight. So it should be pretty interesting once I go to bed. And I just dont care. I sleep to pass the time. Im in a stage of wait in my life. Wait for this, wait for that. Ive been waiting for a while now, and it looks like itll be a while longer. Oh well, perhaps the greatest lesson I am going to learn in this life is patience, Oh and resourcefulness. Cause I try alot of stuff to keep myself busy, some of it works, some of it doesnt. None of it will matter in the end. No biggie. At least I tried my best. I seriously am. Ive got one hell of a clean house.

Thursday, March 3, 2011

"The What Danielle Wants Coffin"

Is it right to want something for yourself after becoming a Mother? Is it ok, to want to feel fulfilled in all aspects of your life? Or am I just being selfish and not being satisfied with what I have? Its not like going back to school means I would be neglecting my children. I will take as much care of them as I do now. Is it wrong to have been inspired by my oldest daughter to become a nurse? I look at her and see how well she is doing, and I know I did that. I spent the time and energy to make her healthy. I couldve just let her not eat and then she would have a G Tube, and she would be hooked up to a feeding tube at night. 

If I do it 'your' way, the last little bit of my heart will break. Why cant I want to be something more? Why? This baffles me. Im totally speechless. I cant even think of what else to write. I have toyed with this 'letting it all go' idea for a few months now. Just allowing myself to let anything I want go. And what I want will more than likely end up in a better life for my children. I have spent the last 3.5 years not wanting anything for myself. And look at how well she is doing! Is it not ok for me now to take a step back and do something different. 

Maybe I will let it all go. You say Im different now, but just you wait til I put the final nail in the 'what Danielle wants coffin'. You think I have nothing to say now, I really wont have anything to say then. I will be a hollow fraction of the Mother I used to be. Being strong and wanting to further myself has made me be the Mother I know I am. Having something for myself is what made me sit there for hours and try to get her to eat 3 oz of formula. My determination is what that was. She is 3.5 years old and I still have to feed her! I do it because she is my child. DONT YOU KNOW HOW HARD IT IS! No you dont. You think you do, but you dont. You dont live my life everyday. You are here once or twice a week. That is not seeing what really goes on. I talk to you because you are my family, and I would like your love and support. But I can see that I can no longer talk to you in the manner I used to. So I will talk to you about information. But I will not talk about my feelings or emotions. I will tell you about my children but not about myself. Because as you see it, Im a Mother, and I dont matter anymore. Youre tie raid scared the shit out of my children. So much that my oldest said 'Im sorry Mommy that was horrible'. I never attack you. When you are upset that the people you work with dont like you, I always say Im sorry. I tell you that they dont know what they are talking about. I didnt not provoke this fight. YOU DID. You always do. And its true, you have no compassion. No empathy. HAHA I said I was speechless. Guess not. 

Thursday, February 3, 2011

Falling from Grace, Loss of Innocence

When I was pregnant with Alexandra, I believed that everything would be okay. I believed she would be born whole, and that all the doctors were saying would never come to pass. When she was born, and all that the doctors said came to be true, my heart broke. And since that say I have never recovered. My heart has been broken for the last 3.5 yrs.

My faith in God was always a strong one as a child. I always believed God would provide. I had 'blind' faith as some call it. Even as a young adult, my faith in Him still remained strong. My ideals of the world were still innocent. The day Alexandra was broken, my innocence was lost. I fell from Grace. I felt like God let me down. He didnt come through when I needed him to more than any other time before in my life. I have cannot find the way to forgive him for allowing her to be born this way.

My Mother said this is sins doing. Not my sin, not my Husbands sin, but Mankind's sin. As in 'Adam and Eve ate from the tree of knowledge' sin. Well so maybe Im mad at Adam and Eve for messing it up for the rest of us.

So how does one go about getting their faith in God back? I have no doubt he exists. I know he does. But I feel like he doesnt care. He doesnt see the suffering. The anguish and pain. Has he not layed eyes on my daughter laying in that hospital bed with all the tubes coming out of her on life support? Is he powerless to change it? I know Im powerless to change it. How can I get my faith back?

Im trying to figure this out. But I have no clue where to begin. Perhaps Ill pray for the clue.......

Saturday, January 29, 2011

WEIRDO!!!!!!

So I may be a weirdo, but I dont care. I realized something today. When I step into a hospital I come alive. Im fascinated with all things medical. I can feel again when Im in a hospital. Isnt that just effing weird? Its like this is what I am meant to do. I am meant to help save lives. Cant save my own, but I can save others. Perhaps that is part of the reason God gave Alexandra to me. Now that kind of pisses me off in a way, that God would allow her to be born with her condition just to show me my path in life, but I can see the logic behind it. She is my inspiration. Without her I wouldnt have discovered how medical things make me feel.

Shit, I know this is stupid. But Im going to get my ass back to school to be a nurse. I have to. Its my calling. I know it is. My heart will not be whole again until I am part of saving lives. So there. I said it.

Friday, January 21, 2011

NO! Im not out of my Prozac!

Yeah, my sister asked me this evening if I was out of my Prozac. Im not. So I was having another emotional breakdown. It happens all the time. I cant even control them anymore. I wake up and I can feel them lurking. Right underneath my skin. They bubble up and try to overtake me. I used to be able to push them back, sometimes. Now I have no choice but to give in to them. The Prozac isnt working. Im not sure it ever did. Now when I cry, I wail.

We did just get some bad news about Alexandra. She had a heart cath last Friday. Unfortunately there is literally no blood going to her left lung, hence her lower oxygen levels. Bad news. So we probably have another open heart surgery on the horizon. They are stll trying to figure out what to do to help her. Scary. Now we truly have ventured into the unknown.......

So its not unreasonable to think Id be a bit off my game right now. Ive been off my game for years now. Ive been emotionally drained for the past 4 years. It will never end. I try to keep putting one foot in front of the other. Sometimes, it gets to much to bear. I fall on the floor and wail. I really need to get back to the shrink. Im sinking deeper. I can feel it.

Im not sure what else to write. There is so many thoughts and emotions running through me at all times that I cant pick out one clearly.

Shit. I feel selfish, So many other CHD Moms have blogs. Their blogs chronicle their CHD kiddo's journey. I dont have one for Alexandra. I have only my blog. Its all about me isnt it? Ive got a sick kid, look at me! I chose to be a Mother, I should suck it up. Perhaps her journey is my journey. My first baby. I refuse to let you go. Your story is not over. You have much left to give and much more to do. Alexandra, I wanted you more than anything. I tried for you for 2 years. Why must we endure this? Why must you have to deal with this pain? Why must I have to fear for my childs life everyday? I know nothing is promised in life.

Oh fuck, Calgon take me away! I know Im rambling. But this is me getting it out. I effing hate everything. Im miserable. Im completely and totally lost. No amount of drugs is going to get me where I need to be. I have to change it myself. I feel like I no longer have the strength to. I sometimes feel like Im going to have to have a total breakdown, hit my complete rock bottom and then Ill be able to come back. I fear of what that rock bottom is. I fear its having to live without her. I dont want to live without her.

God, dont you make me live without her. Im already pissed at you. Dont push me over that edge. I will call you out. You and I have had this talk many times. Dont crush my already fragile faith. I beg of you. As your child, I beg you not to take my flesh and blood away from me.

Oh fuck it all. Im done for tonight. Its been a long time since I last wrote a blog. Figures I would call out the Almighty. Im totally going to Hell.......hahahaha. Well if I am Im going with a smile on my face.