Wednesday, September 5, 2012

Feeling Sorry....

Ive felt sorry for myself for a long time. Sorry because for some reason boys didnt like me in high school. And um I was really pretty, and really smart. So when I got into college (for the first time, back um like what, 15 years ago) boys liked me, so thats all I thought about. Some man to love me. So I dropped out, cause retail seemed good at the time, and all I wanted was some boy. Also because I honestly felt I really wouldnt make it past age 21. So I started to feel sorry for myself. Because I was meant for more than this, but I felt stuck. I was thrown out of my parents house, so I had bills to pay. Then God gave me Alexandra. It threw me WAY into left field. In those early years, I felt the weight of the world on my shoulders. Being blessed with a child with CHD almost validated everything I thought God wanted for my life. Pain, suffering, loneliness, I honestly thought God had left me. Maybe for so long I was running away. There is so much anger in my heart. It still resides there. Somewhere along the road of my life, I forgot how to have fun. Cause all I could see was my imminent demise. But I put on a good show didnt I. I managed fine jewelry stores and made plenty of money. I was semi-powerful. Then I had no choice but to become a stay at home Mom so that my oldest had the best chance of survival. I lost the mask. I had to take that good hard look in the mirror. I spent the first 3 months of Alexandra's life holding her in my arms and crying. Begging God that if he had to take her to take me with her. Then I got pregnant with Aria. I was mortified. And so Ive spent the last 5 years in a state of total confusion and disarray. My mind is in chaos. And thats why I am struggling with my return to college. My mind is scattered in so many directions I cant see the path. Perhaps because I can now see how truly scattered I am, I can try and fit the pieces back together again. But I must learn that God doesnt want suffering in my life. That may be the hardest lesson to learn.

Friday, June 8, 2012

Stimulation overload.....

Days like today make me happy and then they make me realize how hard life is. I always knew my life wouldnt be easy per se.....but never did I think it would be this hard. Today is my wonderful Husbands birthday. Originally at the beginning of the week we had planned on having a night out just the 2 of us, and my parents were going to watch the girls. But yesterday while calling my Mom to get her advice on something, my sister threw a total tantrum about things that have nothing to do with her and why do I need to call my Mom to get her advice because and I quote "Danielle ran a million dollar volume jewelry store, why does she need your advice!?!?!". My sister is very troubled. And after this particular incident, she threatened her own life. She is in a very bad place right now, and Im very concerned for my parents health. Im very afraid that this will ultimately kill my parents early as the stress of living with my sister is unbearable. She really needs some professional help, which I have tried to convince my parents into getting, but they feel horrible to do that to their daughter, which I totally understand. So Kevin and I made the decision that we think it would be best to not put any undue stress or pressure on my parents, as they have another "child" to deal with right now. I know my Mom would be there if I really needed her, but going out together alone isnt necessarily needed. Would be nice, but not necessary. Kevin and I's marriage has been on the backburner for quite awhile now, and I guess its just going to have to be for a bit longer. I do truly hope my parents can help my sister figure this out so she can move on with her life.

So instead of going out as a couple we went out as the 4 of us. Of course in true Edges family fashion, something not planned always gets into the mix and we ended up having to get a tire on my car replaced as it was about to have a blow out. Thankfully, it was warrantied. :) We went to the movies and then out to eat after and everything seemed relatively fine, UNTIL.....

We got in the car on the way home. Alexandra went into full blown freak out mode. Im talking screaming, crying and carrying on mode. I truly believe, from experience, that when Alexandra has too much stimulation, for example being out of the house for 5 hrs or more, she gets overstimulated and cannot control her emotions. So it was a fight home, and then a fight once we got home. And bedtime it got the worst. She kicked her Dad in the face and kidney twice because she didnt want her washable chux underneath her because she is tired of this and I quote "shit" and she is a big girl. (the chux are because she urinates a ton because of her lasix at night) This continued for 15 min of screaming and crying.

I hate that she has had to go through so much. I wish I could take it all away. I feel powerless in the whole situation.

Im actually kind of upset that Kevin and I didnt get to go out tonight alone. I really wanted to spend some time with just us, even though we would probably talk about the kids the entire time. But it would be us, and quiet without having to tell someone to sit down, calm down, dont blow bubbles in your drink, etc, etc etc...

But alas, life goes on. And we keep on keepin on.....there really isnt anything else to do.

Friday, May 25, 2012

Money, oh how I loathe thee

Im not sure why I seem to battle this depression over and over again. I have good days, I have bad days. Everyone has those. We are all human. But my bad days are bad. Today was one of them. Of course its payday. I get up this morning, and take a look at our bank statement online. I immediately go into panic attack mode. I mean, what I knew it was going be it ended up being. Maybe I was hoping Id be surprised. Im grateful for what I have. I am. I live in a nice house in a good neighborhood. I have a good job, and so does my Husband. But you know....we struggle, and I dont mean like oh I cant so shopping this week for a new outfit for myself or the girls....I mean, like "oh shit, we have to pay $1000 for the rent and we only have $1125 bucks in the bank". If I have a hard day, and dont really want to cook dinner, I cant even take the kids to McDonalds, just to give myself a little break. Cause theres nothing left. After the SRP and water, and gas, and food, and meds, there is nothing. We make too much for Food Stamps. (Thank you so much federal government, cause according to Yahoo! research a family of 4 living on less than 40,000 a year is considered poverty level, we make 32,000) Thank God my parents own this house. They let us have a break on the rent, A LOT. Too much more than I like it to be. I feel horribly guilty, cause my Mom is in so much pain with her legs, and her diabetes, and the fact that she had open heart surgery 5 months ago, that she has to work, cause if she didnt, they couldnt help us with the mortgage. Id be happy to go to work and let my Mom watch the girls, but she cant physically do it. Daycare is outrageous and unless I found a job making over 50,000 a year (I have no college degree, my parents couldnt pay for me to go to college, but still made too much for grants, so I ended up with student loans and after almost 2 years, I realized I could never pay them back, so I dropped out of school, my only work experience is retail sales, 13 years of selling fine jewelry, and we all know how much retail makes, NOTHING) we wouldnt be making any more money as we would be paying it out in daycare expenses. Im just sick and tired of living like this. I have tried over and over again to be happy with what I have. Its not like Im asking to be able to go out and shop all the time. I cant take the kids to a movie, not even a flippin matinee! I have to keep them at home and just try and entertain them as best I can.

I know Im kinda complaining. Sorry if I made anyone upset. Its been one hell of a hard day. I wanted so badly to buy Tide today at Walmart, cause lets be honest it really does get out stains better. But I didnt, I got the cheapy stuff. And it ruins the few good clothes the kids have. I keep trying to change it. I have thought about getting an overnight job at Walmart while Kevin is here asleep with the kids, but everyone says that may be too much for me. Its alot of work with the kids during the day, and they dont take naps anymore, and Alexandra is a alot of work. Getting her to eat, do things for herself, etc. Its hard. Everyone thinks it would be too much for me to work overnights at Walmart, work my 2 day a week job at Ultra and take care of the kids. Part of me wants to try it and if the extra money helps me feel may balance the scale of my depression.

Who knows. I sure as hell dont. Guess Ill just keep putting one foot in front of the other.

Thursday, April 26, 2012

Somethings Gotta Give

Something just has to give. I am so tired of spending 99% of my day frustrated for one reason or another. Its either someone whining or someone not eating. Its always insanity. When the girls are together they fight, and hit one another. When they are apart, they whine constantly. Mommy is losing it!!!!

I really cant figure out how to change any of it. Im always tired. I get at least 7 hrs of sleep a night, granted its broken sleep, but its sleep. Maybe that is my issue? Broken sleep? There isnt anything I can do about that, as either child is always waking up once or twice a night. Or the feeding pump goes off. Or someone pukes. Kids.

I love my children, I do. Mommy is just really tired, and really needs some time alone. I also need some sex, but I wont be getting that anytime soon. I have been really trying to read Proverbs and Psalms, and just rely on God to fill those empty spaces, but its not totally working. I have days, like today, where Im just tired. And I cant focus, so all that good advice just goes out the window, and all I really want is a roll in the hay with my Husband, and about 8 hours of uninterrupted sleep afterwards. The more I think about this, the more it has to do with sex, and oh geez it makes me seem sooooooooooooooo horrible. Like thats all I want. I dont want it from anyone other than my Husband. But he is having some emotional issues of his own, and is kind of 'distancing' himself from that area of our relationship, and has been for the past year now. I try to just occupy myself with other tasks, cleaning, playing Mario on the Wii, or whatever other Motherly duties I must perform. But the more and more I do, the more and more I just want our old relationship back. Which I know is totally impossible. We have been through way too much for us to go back to the way it used to be. But I wouldnt mind a bit more intimacy. Ive spoken my mind many times to him about this, and he is just not going to budge on this until he is ready. I respect that. We all carry emotional scars and memories from our childhood that affect us even in our adult lives. His Mother said something horrible to him about the recent weight gain he has had due to some medication, and of all places she wrote it on his Facebook wall. It was just horrible what she said. "What on Earth have you been eating to make you swell up like that?" Just really not nice things you wanna hear from your Mom of all people. And ever since then.....well our physical relationship has been nothing. I honestly think its been probably 6 months since Ive kissed my Husband. At least 3 since Ive hugged him.

I get these really neat ideas, especially when I drive home from work late at night. I think oh Im going to get home and just give him a big hug and maybe itll just lead to other things.....and I walk in the door and yep that idea aint gonna work.

In other news, Aria has been potty training really well. Im so super proud of her. :)

Wednesday, March 28, 2012

Always at Odds

The past week has been a difficult one. Alexandra having to be hospitalized with Influenza A pneumonia, and all that the hospital means for her and for our entire family. Just overwhelming. It gave me some time to think.

Most of the time, its bad when I think. This particular time, it wasnt good either. Initially, upon finding out her virus culture came back positive for something, I wasnt too upset. Respiratory infection, duh. No biggie. But when they gave me the Influenza A diagnosis, I pretty much freaked. I thought about how I could keep her in a bubble. I thought Im never going to let her out of the house again. Now, most of her life I have been focused on her quality of life, because the quantity may not be what the usual is. This was the first time I actually thought twice about that decision. Why? Because Im afraid to lose her. I cant lose her. But I want her to live. It is seriously a difficult line to cross. I have flip flopped so many times over the past week on this. For about a day, I was never going to let her go back to school for fear of the germs. But I cant make her live this way. I have to let her live.

I know for many parents, its always difficult when we realize its time for us to let them go, to let them do their thing. Im a control freak I admit it. I want to control it all. And with her out of my sight, I cant control anything. She is at the mercy of the world. This world that can be so cold. So heartbreaking.

This all ties into my issues with my belief in God. Not that I dont believe in him, but Im not sure at times that I trust him. Im not sure I trust that what His will is, it has my will considered in it. And heck, hes God, why should He consider my will or desires. And in wanting her to be with me in this life until I go first, well shit its kinda selfish, I know. But Im her Mother, I want to see her grow and prosper, and LIVE. Im afraid that God may not want the same thing. So in turn its hard for me to put my complete trust in him. Cause well, Im only human. And if someone tells me that feeling like this is a sin, well then I guess Ive got my place in Hell, cause I cant figure out any other way to feel about this.

Ive struggled with this for really my entire life. But not as much as I have over the last 4 years. Maybe because it doesnt just affect me anymore, it affects her too. I only want her to have the opportunity that all others have. And yeah I know I know, no one in this life has guarantees, but this is a total different situation. These CHD kiddos are not the norm. Not even close. I really couldnt care less what happens to me, I just dont want her to miss out on this wonderful thing called life. I can only hope and pray that God feels the same way.

And maybe He wont. Maybe He will take her before me. And Ill be pissed off. Cause its like this, "well God I put my faith in you, and you still took her, why?". Its hard not to question. My whole life teeters on the edge of this. I cannot seem to escape this turmoil with God.

And Ive prayed. A LOT. Maybe Im just falling short somewhere. Ill probably never know where.

So I just spend each day putting one foot in front of the other, and doing what needs to be done. Being there for my children, and caring for them the best I can.

I guess Ill just LIVE. Cause its all I can really do as a human being.

Monday, January 30, 2012

Whats my problem?

Im having a bad day. I always write when Im having a bad day. I think Ive always been more comfortable with the more melancholy emotions of life. So fitting God would choose me to be the Mother of a child with CHD.

Im having some really difficult days with Aria. Shes 2 weeks with no binkie. Shes so emotional. Took her and Alexandra to a birthday party last Saturday and Aria literally cried the entire time.

Sometimes, well most of the time I feel like a shit Mom. Neither of the girls are potty trained, and I have no clue how to do it. Alexandra just physically isnt ready, and I cant get Aria to do anything Alexandra doesnt do. How in the hell am I going to do this? Im so overwhelmed.

I basically got told my children run amuck. Do they? Really? My Mom says they dont listen to me. Id pretty much say thats true. But I have no idea how to get them to. Im currently in the process of time out and counting, which seems to be working. But I still get no respect. Honestly, I dont even know what to write my brain is in such a jumble.

Im really concerned for my parents health. Im concerned because my sister is just totally out of control and will not get help. Shes very bi polar (undiagnosed). She is in a very bad state, and she spits shit out at everyone, which makes it so stressful on my parents. I feel as though I cant talk to my parents about my troubles, because they cannot handle mine, as they have too many with my younger sister. Imagine how that feels? Im literally drowning.

What the hell am I going to do? I feel as though maybe Ive neglected Aria because Alexandra has been so much work. And now the damage is done. How can I change this? Im not a very good 'player'. I cant really play with the girls. I dont know how. So they kinda play and I either sit on the computer or Im cleaning. Like right now.

I wonder why it seems that so often I lose my chipper outlook and it all crashes in on me? At one moment I have all the answers and at the next Im clueless. Whats my problem?

Monday, January 9, 2012

Guilt and Lack of Understanding

Im pretty sure anyone who actually reads my blog knows my Mom had to have open heart surgery. She almost had a heart attack and they found 3 blockages in her arteries. Her heart wasnt getting enough blood. And now fast forward to......

Today, my Mom's check ups with her CV Surgeon and Cardiologist. Her cardio guy is REALLY to the point. So much to the point I wasnt even there when she went to the appointment, and I could feel the stabbing. This is what he told my Mom...." I see 2 kinds of patients, one kind doesnt care, and the other cares too much, cares too much for others, I know which kind of patient I have here." WOW. So hearing someone say this....and considering how much I have needed my Mom's support over the past 4 years since Alexandra was born. Oh my this made me feel soooooooooooooo GUILTY! Now, I know have a perpetual guilty conscience. But wow, I really feel like total shit. Like "well crapo, I almost killed my Mom". I know my Mom did it cause she knew I needed her, and she loves Alexandra. But all the watching Aria, and then having to go to work, while Alexandra was hospitalized, because Kevin had to go to work so we could pay for our bills, and I cant leave Alexandra alone at the hospital, cause she would freak out on me. Wow, Im just floored. I am feeling so guilty like Im the one who put Jesus on the cross. Hell, I feel like Judas himself.

This gives me new meaning for "Im going to go waterboard myself now". I honestly want to go bury myself in my bed.

Wait, no. In the actuality of makes me pissed. PISSED OFF. Yeah pissed at you know who. The one whos fault it really is. The one who allows CHD to exist in this world. You know just when I think Im getting a handle on everything, it all goes to shit. Where is God in all of this? Im just clueless. I dont understand anything you do Lord. And I know you exist. Maybe Ill go to hell for this, but I need to understand your motives. I need to understand your reasoning. Why should we just sit blindly by and just keep praying and hoping youll look out for us? Yes, I see Alexandra as a miracle. I dont understand. Will you not be satisfied til we are all dead? Sometimes I wonder if youre out to get us. No its not the devil. Thats what my Mom would say.

I am only human. I make mistakes. But you gave me Alexandra. And I needed my Mother. Now this guilt. Youd think I was a Catholic.

Maybe Ill never understand. And when I finally am able to, that understanding wont matter anymore. Im asking you Lord, Im praying to you, PLEASE stop this torment. Please stop the endless barrage of horrible things that keep befalling this family. Im reaching out to you. Show me you can do what you say.