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 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" 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.....