Sunday, January 2, 2011

Last Night

Last night, my mom and I were at the Ronald Mcdonald House. My mom was sleeping and I was on the computer. I went upstairs to go lay down and my mom woke up, saying she wanted to go see Maddox. It was 3am, but we went over there anyways. Thank God we did because he was very sick. He was breathing hard and fast and we were being asked to discuss what we want done if he were to go into cardiac arrest. At first they didnt know why this was happening and I was scared it was just his body giving out. Thankfully they found out it was an infection and that he is still fighting and he wasnt giving up.

So basically, we are back to square one with getting him off the vent. Thats okay though. He needs it. We are now told that he may not even be able to get off the vent. But we will talk more about that when it comes down to it.

Last night was so scary though. I felt a little bit of what it will be like when he is actually dying. I was in some type of shock. All I did was sit there looking stupid with my mouth open. I didnt really want to look at him much because it hurt too bad. My mom held his hand most of the time. I just couldnt handle seeing him like that. He looked like he was in pain and struggling and it hurt too much. I seriously thought it was gonna be it. But it wasnt.

I have had a few more bad dreams since my last. One of them he went into cardiac arrest and I just held him. It seemed very real and I handled it well. It scared me though because in my dream, I saw his face when he went and it scared me. My other dream was, it was me who was sick, and I could feel the problems in my heart. I could feel the beat and it felt weird.

Sometimes, (mostly when I lay down to go to sleep) I feel my heart beat and my slow breathing, and just think, why I am okay? Why doesnt his body work like this? Sometimes I just dont understand...

I just read over my entire blog. Its like all my hopes are continually getting crushed. First it was, okay Maddox will live probably till his 20s. Sad but I cant deal. Then, I am broken by the news that he will live maybe to 6. Now its, he only has a few months or even weeks left. These things are really wearing on me. What is next for us?

I found a few families that lost their children to congenital heart disease too. Maybe I should change my blog to My CHD Son and Me instead of My AGS son, since the CHD is what is hurting Maddox the most. I will keep it the same though. I have been okay lately. Besides last night, I dont know if I am dealing with this or if my brain put it to the side, or if I am in disbelief or what but I am okay. I have been in Maxs room all day but have not interacted with him much today because I want him to rest. When we play or talk with him too much he gets irritated and cranky because he is more aware of the tube.

I have not much to blog about today. Everything is pretty much the same for us. All though I have been very irritated lately. People annoy me so much so I deleted a good half of my friends list on facebook lol. I had 480 then went down to 271 friends. Feels better since a lot fo the people I had on there were annoying and just liked snooping at my pictures. Everything seems to annoy me lately. I hope I dont stay like this forever.

OH, I think I am starting to see why everything happens for a reason. From rehab, to my baby sister, to Ron getting fired, to Maddox, and God. All of these things link together some how. Like, I got my drug and party (years over with because I was going to have a baby in the near future and needed to settle down. My baby sister was born to bond with me and help me through Maddoxs passing and give me something to live for. Ron lost his job a week before Maddox was born because we were going to be in and out of the hospital. Maddox is sick and it is bringing me closer to God and everything is just happening in order. I wish I could take Maddoxs illness out of the order but I cant. What will be next after all of this? There are so many things that I have found reason to and it is bringing me comfort. I also keep experiencing de javu (sp?) .  So weird how everything has a purpose.

Anyway, I have not much else to blog about, so I will start again soon. Thanks for listening.


  1. Brooke, I saw your post on Eats on Feets and my heart is aching for you. I will hold you and your baby in my thoughts. Love and light to you.

  2. :o( Keeping you all in my thoughts every day.

  3. I found your site via reference on Bowen's Heart. We will pray for your strength and peace. Please know, your feelings are normal with what you are experiencing right now. My neighbor's lost their 5 yr old daughter after a heart transplant 4 1/2 years ago. My neighbor expressed some of the same feelings you mentioned here. If you would like to e-mail me at I will put you in contact with her. Strength and Comfort to your family as you ride this emotional roller coaster on this journey.